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Income and expense are whole-filing amounts associated with this lobbyist, not personal compensation or an allocated share.
No topic inference: each bill number appears in source LDA issue text assigned to this lobbyist.
An act to provide for reconciliation pursuant to title II of H. Con. Res. 14.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Sent MDA Comments to House Oversight and Investigations Subcommittee on Hearing on Fraud in Medicaid Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on HHS Notice of Benefit and Payment Parameters for 2027 Proposed Rule Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on H.R. 1 HCBS Waiver Supported the Alleviating Barriers to Caregiving Act
Specific issues are shown only where the LDA source assigned them to this lobbyist. Targets apply to the associated filing.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2026 · second_quarter · Q2
Supported the reintroduction of the Patient Access Act
Advocated for the passage of the Alleviating Barriers to Caregiving Act Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported legislation that increases access to home and community-based services Supported the HEARD Act Advocated for the passage of the Newborn Screening Saves Lives Act Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Joined an ITEM Coalition Letter to Request a Meeting with Administrator Oz to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs - ITEM Coalition Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Joined a Coalition Letter Sent to Congressional Leadership in Support of NIH Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act Joined Coalition Comments to CMS Re: Proposed Rule on Interoperability Standards and Prior Authorization for Drugs - MAPRx Filed MDA Comments on Defending Constitutional Rights and Exposing Institutional Abuses Task Force Hearing on "Universal Basic Fraud: Vulnerabilities in Medicaid Waiver Programs" Joined Coalition Comments Warning of Massive Coverage Losses under Final Work Reporting Requirement Rule Coalition Comments Re: Making Improvements to the Hart-Scott-Rodino Act (HSR) Premerger Notification and Report Form Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act Joined Coalition Comments to Congressional Appropriations Leaders on NIH FY 2027 Appropriations Requests Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Joined Coalition Comments Urging Against Cuts or Policies that Further Impact Medicaid and the Affordable Care Act (ACA) in Budget Reconciliation Joined Coalition Comments Re: FY 2027 Newborn Screening Programs Appropriations Request Joined Coalition Comments on NIH FY 2027 Budget Request from the Administration Joined Coalition Comments on FY 2027 NCATS Alliance Appropriations Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Joined Coalition Comments to Centers for Medicare and Medicaid Services on Significant Concerns with Medicare Competitive Bidding of Ostomy and Urological Supplies Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Local Coverage Determination (LCD) for Wheelchair Options/Accessories Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub Supported the DREAM Caregiver Health and Wellness Act
Source: Senate LDA
Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to FY2027 House Labor, Health and Human Services, and Education Appropriations Subcommittee for the Assistive Technology (AT) Act Joined Coalition Comments to FY2027 Senate Subcommittee on Transportation, Housing, Urban Development, and Related Agencies Appropriations for the U.S. Access Board Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for ALS Programs Joined Coalition Comments to the House Appropriations Subcommittee on Labor, HHS, and Education Request for the National Institutes of Health (NIH) for Fiscal Year (FY) 2027 Sent MDA Comments to U.S. House of Representatives Leadership in Support of H.R. 7148, Consolidated Appropriations Act of 2026 Sent Coalition Comments to Congressional Leadership re: NIH FY26 Appropriations
Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act (S.4472) Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act (H.R.8205) Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub
Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act (S.4472) Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act (H.R.8205) Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub
An act to provide for reconciliation pursuant to title II of H. Con. Res. 14.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Supported the ABC Act
An act to provide for reconciliation pursuant to title II of H. Con. Res. 14.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Supported the reintroduction of the Patient Access Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit
An act to provide for reconciliation pursuant to title II of H. Con. Res. 14.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Submitted MDA Comments to HHS Sec. Kennedy on Personal Responsibility and Work Opportunity Reconciliation Act of 1996; Interpretation of Federal Public Benefit Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit Joined Coalition Comments to HHS on Ensuring Lawful Regulation and Unleashing Innovation to Make America Healthy Again Request for Information Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514
An act to provide for reconciliation pursuant to title II of H. Con. Res. 14.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments for Passage of the Senate FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill Filed Comments re: Senate Special Committee on Aging Hearing "Aging in Place: The Impact of Community during the Holidays" Filed Comments re: Urgent Consideration of Enhanced Premium Tax Credits (eAPTCs) Extension and Labor/HHS Appropriations Filed Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Filed Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease (11.19.2025) Joined Coalition Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Joined Coalition Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Joined Coalition Comments Urging Congress to Find a Solution to Expiration of eAPTCs Joined Coalition Comments Calling on Appropriations Leaders to Finalize NIH Funding Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Joined Coalition Comments to Administration Officials Regarding Junk Insurance Plans Marketplace Integrity and Affordability Rule Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan Advocated for the passage of the Newborn Screening Saves Lives Act
Association Health Plans Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments and a Meeting Request to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Joined Coalition Comments to FDA Commissioner Makary Requesting Town Hall Meetings with Patient Advocacy Organizations Joined Coalition Comments to Congressional Leadership in Support of National Institutes of Health Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health (6.5.2025) Wrote a Letter to Chair and Ranking Member of the House and Senate Appropriations Subcommittees on Labor, Health, Human Services and Education on FY26 Newborn Screening Program Appropriations Joined Coalition Comments to Congressional Leadership on Support for NIH and Brain Health Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Joined Coalition Comments to HHS Secretary Kennedy on Elimination of Advisory Committee on Heritable Disorders in Newborns and Children Joined Coalition Comments in Support of the HCBS Settings Rule Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Joined Coalition Comments in Support of the CONNECT for Health Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act
Association Health Plans Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Supported the reintroduction of the Patient Access Act
Self-Insurance Protection Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Supported the reintroduction of the Patient Access Act
Self-Insurance Protection Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments and a Meeting Request to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Joined Coalition Comments to FDA Commissioner Makary Requesting Town Hall Meetings with Patient Advocacy Organizations Joined Coalition Comments to Congressional Leadership in Support of National Institutes of Health Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health (6.5.2025) Wrote a Letter to Chair and Ranking Member of the House and Senate Appropriations Subcommittees on Labor, Health, Human Services and Education on FY26 Newborn Screening Program Appropriations Joined Coalition Comments to Congressional Leadership on Support for NIH and Brain Health Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Joined Coalition Comments to HHS Secretary Kennedy on Elimination of Advisory Committee on Heritable Disorders in Newborns and Children Joined Coalition Comments in Support of the HCBS Settings Rule Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Joined Coalition Comments in Support of the CONNECT for Health Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act
Improving Seniors’ Timely Access to Care Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514 Supported the ABC Act
Improving Seniors’ Timely Access to Care Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Submitted MDA Comments to HHS Sec. Kennedy on Personal Responsibility and Work Opportunity Reconciliation Act of 1996; Interpretation of Federal Public Benefit Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit Joined Coalition Comments to HHS on Ensuring Lawful Regulation and Unleashing Innovation to Make America Healthy Again Request for Information Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514
Newborn Screening Saves Lives Reauthorization Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Supported muscular dystrophy research efforts at the CDC
Newborn Screening Saves Lives Reauthorization Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Submitted MDA Comments to HHS Sec. Kennedy on Personal Responsibility and Work Opportunity Reconciliation Act of 1996; Interpretation of Federal Public Benefit Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit Joined Coalition Comments to HHS on Ensuring Lawful Regulation and Unleashing Innovation to Make America Healthy Again Request for Information Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514
Improving Seniors’ Timely Access to Care Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Submitted MDA Comments to HHS Sec. Kennedy on Personal Responsibility and Work Opportunity Reconciliation Act of 1996; Interpretation of Federal Public Benefit Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit Joined Coalition Comments to HHS on Ensuring Lawful Regulation and Unleashing Innovation to Make America Healthy Again Request for Information Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514
Improving Seniors’ Timely Access to Care Act of 2025
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514 Supported the ABC Act
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
Accelerating Kids’ Access to Care Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Prepared for the reauthorization of the ACT for ALS Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
RARE Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Prepared for the reauthorization of the ACT for ALS Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Creating Hope Reauthorization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
Telehealth Modernization Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
TELEMH Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry
Ensuring Access to Medicaid Buy-in Programs Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Ensuring Access to Medicaid Buy-in Programs Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Ensuring Access to Medicaid Buy-in Programs Act of 2024
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Air Carrier Access Amendments Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for increased funding of home and community-based services (HCBS). Advocated for passage of the Disability Employment Incentive Act. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Provided feedback and comments to the Senate's PREVENT Act.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for further accessible air travel reforms within the 2023 FAA reauthorization.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Submitted recommendations to the Senate Commerce Committee on accessible air travel within the FAA reauthorizations
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for further accessible air travel reforms within the 2023 FAA reauthorization.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for accessible air travel priorities to be included in the 2023 FAA reauthorization.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Submitted recommendations to the Senate Commerce Committee on accessible air travel within the FAA reauthorizations
Transformation to Competitive Integrated Employment Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act.
Transformation to Competitive Integrated Employment Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Transformation to Competitive Integrated Employment Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Transformation to Competitive Integrated Employment Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Transformation to Competitive Integrated Employment Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for increased funding of home and community-based services (HCBS). Advocated for passage of the Disability Employment Incentive Act. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Provided feedback and comments to the Senate's PREVENT Act.
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Drafted recommendations to the Centers for Medicare and Medicaid Services on strengthening the Medicaid program. Supported the Administrations efforts to withdraw the previous Administrations Public Charge rule. Submitted recommendations to the Department of Health and Human Services on the implementation of section 504 of the Rehabilitation Act. Supported greater appropriations for Consumer Assistance Programs Advocated to the Architectural and Transportation Barriers Compliance Board (ATBCB) for amended Standards for Accessible Medical Diagnostic Equipment. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Commented on fixing the ACA Family Glitch to the Treasury Department Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583)
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS).
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS). Asked for greater appropriations to assist schools with providing services to individuals with disabilities. Supported greater appropriations for Consumer Assistance Programs
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the end-of-year omnibus package. Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Supported greater appropriations for Consumer Assistance Programs Advocated for the passage of the RARE Act (S. 4185) as part of the end-of-year omnibus package. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583) Advocated for the Access to Genetic Counselors Act Provided recommendations to the Department of Health and Human Services on the implementation of section 1557 of the Affordable Care Act. Applauded the Department of Health and Human Services in their closing of the family glitch within the Affordable Care Act. Advocated to the Centers for Medicare and Medicaid Services on Medicaid access and the COVID-19 public health emergency Called for passage of the Preserving Patient Access to Home Infusion Act (S. 2652/H.R. 5067) Provided comments to CMS on ensuring equity in accessing health care. Provided comments to the Department of Health and Human Services on how best to streamline eligibility and enrollment within the Medicaid and CHIP programs. Called for recipients of the Deferred Action for Childhood Arrivals program to access Federal health programs and offerings. Provided comments to the CMS on the implementation of the No Surprises Act. Called for greater funding of the National Center for Advancing Translational Sciences (NCATS) Called for the passage of the Medicare Orthotic & Prosthetic Patient-Centered Care Act Provided comments to CMS on National Directory of Healthcare Providers and Services
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Supported greater appropriations for Consumer Assistance Programs Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Commented on fixing the ACA Family Glitch to the Treasury Department Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583) Provided comments to Congress on portions of the Inflation Reduction Act, including the Medicare out-of-pocket cap and smoothing mechanisms. Joined coalition comments on the CY 2023 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies Proposed Rule. Provided policy suggestions to CMS on the annual Notice of Benefit and Payment Parameters. Advocated for greater coverage of seat elevation systems and standing wheelchairs within the Medicare program. Advocated for the Access to Genetic Counselors Act
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for increased funding of home and community-based services (HCBS). Advocated for passage of the Disability Employment Incentive Act. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Provided feedback and comments to the Senate's PREVENT Act.
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS). Advocated for greater funding amounts going towards Department of Education programs focused on educational offerings for those with disabilities. Advocated for additional funding for the Social Security Administration to implement programs for those with disabilities
Supplemental Security Income Restoration Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Supplemental Security Income Restoration Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Supported the enactment of the SSI Restoration Act. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Commented on fixing the ACA Family Glitch to the Treasury Department Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Supplemental Security Income Restoration Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Joined a Coalition Letter Sent to Congressional Leadership in Support of NIH Joined Coalition Comments Thanking House and Senate Labor, Health and Human Services, and Education Appropriations Subcommittee Clerks Joined Coalition Comments Re: (FY) 2027 Funding for Department of Housing and Urban Development (HUD) Programs Joined Coalition Comments to Congressional Appropriations Leaders on NIH FY 2027 Appropriations Requests Joined Coalition Comments Re: FY 2027 Newborn Screening Programs Appropriations Request Joined Coalition Comments on NIH FY 2027 Budget Request from the Administration Joined Coalition Comments on FY 2027 NCATS Alliance Appropriations
Joined a Statement Signed by MDA on Department of Education IAAs and Impact on Students Supported the IDEA Full Funding Act
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act (S.4472) Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act (H.R.8205) Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub
Encouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024. Joined Coalition Comments to U.S. Department of Transportation Re: FAA Reauthorization Act Requirements Supported the introduction of Air Carrier Access Amendments Act
Supported the MVP Act Supported the Patient Access Act Supported the ALS Better Care Act Supported the Access to Genetic Counseling Services Act Supported the Alleviating Barriers to Caregiving Act Joined an ITEM Coalition Letter to Request a Meeting with Administrator Oz to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs - ITEM Coalition Joined Coalition Comments to CMS Re: Proposed Rule on Interoperability Standards and Prior Authorization for Drugs - MAPRx Filed MDA Comments on Defending Constitutional Rights and Exposing Institutional Abuses Task Force Hearing on "Universal Basic Fraud: Vulnerabilities in Medicaid Waiver Programs" Joined Coalition Comments Warning of Massive Coverage Losses under Final Work Reporting Requirement Rule Joined Coalition Comments in Support of the Medicare Advantage Improvement Act Joined Coalition Comments Urging Against Cuts or Policies that Further Impact Medicaid and the Affordable Care Act (ACA) in Budget Reconciliation Joined Coalition Comments Urging Against Further Cuts or Changes to Medicaid in Budget Reconciliation Legislation Joined Coalition Comments to Centers for Medicare and Medicaid Services on Significant Concerns with Medicare Competitive Bidding of Ostomy and Urological Supplies Joined MDA Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Local Coverage Determination (LCD) for Wheelchair Options/Accessories Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices
Joined Coalition Comments Re: (FY) 2027 Funding for Department of Housing and Urban Development (HUD) Programs Joined Coalition Comments Re: Request for HUD to Release Section 811 Project-Based Rental Assistance Notice of Funding Opportunity
Joined Coalition Comments to U.S. Department of Transportation Re: FAA Reauthorization Act Requirements MDA and AAPD Filed Comments Re: Advanced Notice of Proposed Rulemaking (ANPRM) Re: Accessibility Standards for Universal Changing Stations
Joined Coalition Comments to U.S. Senator Jerry Moran (R-KS) in Support of the Veterans STAND Act
Filing targets: Agriculture, Dept of (USDA), Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Housing & Urban Development, Dept of (HUD), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), U.S. Architectural & Transportation Barriers Compliance Board (ACCESS), Veterans Affairs, Dept of (VA)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2026 · first_quarter · Q1
Joined Coalition Comments to FY2027 House Labor, Health and Human Services, and Education Appropriations Subcommittee for the Assistive Technology (AT) Act Joined Coalition Comments to U.S. Department of Education on Concerns on Proposal to Modify the Definition of Professional Degrees and to Implement Caps on Federal Student Loan Payments
Encouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024. Joined Coalition Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Filed MDA Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Joined Coalition Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements Filed MDA Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for ALS Programs Joined Coalition Comments to the House Appropriations Subcommittee on Labor, HHS, and Education Request for the National Institutes of Health (NIH) for Fiscal Year (FY) 2027 Advocated for the introduction and passage of the ACT for ALS
Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Joined Coalition Comments to U.S. Senate Leadership in Support of the Give Kids a Chance Act
Joined Coalition Comments to House Veterans Affairs Committee, Subcommittee on Oversight and Investigations Re: Opposition to Discussion Draft of Veterans Care Protection Act
Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Sent MDA Comments to House Oversight and Investigations Subcommittee on Hearing on Fraud in Medicaid Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on HHS Notice of Benefit and Payment Parameters for 2027 Proposed Rule Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on H.R. 1 HCBS Waiver Supported the Alleviating Barriers to Caregiving Act
Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the Patient Access Act Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Ways and Means Committee re: Full Committee Hearing with Health Insurance CEOs Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Energy and Commerce Committee on Lowering Health Care Costs for All Americans: An Examination of Health Insurance Affordability Hearing Joined Coalition Comments from Patient Advocacy Organizations Urging the U.S. Senate to Extend ACA Tax Credits
Joined Coalition Comments to FY2027 Senate Subcommittee on Transportation, Housing, Urban Development, and Related Agencies Appropriations for the U.S. Access Board Joined Coalition Comments to House Energy and Commerce Committee on Subcommittee AV and Motor Vehicle Markup Joined Coalition Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Filed MDA Comments to U.S. Department of Transportation on Proposed Guidance on Investigatory and Enforcement Policies and Procedures Joined Coalition Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements Filed MDA Comments to U.S. Department of Transportation on Disability Complaint Reporting Requirements
Sent MDA Comments to House Oversight and Investigations Subcommittee on Hearing on Fraud in Medicaid Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on HHS Notice of Benefit and Payment Parameters for 2027 Proposed Rule Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to Congress Urging Support for the Lowering Costs for Caregivers Act (3.10.2026) Joined Coalition Comments to U.S. Senate Leadership in Support of the Give Kids a Chance Act Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Ways and Means Committee re: Full Committee Hearing with Health Insurance CEOs Joined Coalition Comments from Partnership to Protect Coverage (PPC) to House Energy and Commerce Committee on Lowering Health Care Costs for All Americans: An Examination of Health Insurance Affordability Hearing Sent MDA Comments to U.S. Department of Health and Human Services (HHS) on Proposed Rule Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance Joined Coalition Comments from Patient Advocacy Organizations Urging the U.S. Senate to Extend ACA Tax Credits Advocated for the introduction and passage of the ACT for ALS Advocated for the passage of the Alleviating Barriers to Caregiving Act Supported the Accelerating Kids' Access to Care Act Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported legislation that increases access to home and community-based services Supported the HEARD Act Advocated for the passage of the Newborn Screening Saves Lives Act
Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for National Institutes of Health (NIH) Joined Coalition Comments to FY2027 House Labor, Health and Human Services, and Education Appropriations Subcommittee for the Assistive Technology (AT) Act Joined Coalition Comments to FY2027 Senate Subcommittee on Transportation, Housing, Urban Development, and Related Agencies Appropriations for the U.S. Access Board Joined Coalition Comments to Congressional Appropriations Leaders Re: FY2027 Support for ALS Programs Joined Coalition Comments to the House Appropriations Subcommittee on Labor, HHS, and Education Request for the National Institutes of Health (NIH) for Fiscal Year (FY) 2027 Sent MDA Comments to U.S. House of Representatives Leadership in Support of H.R. 7148, Consolidated Appropriations Act of 2026 Sent Coalition Comments to Congressional Leadership re: NIH FY26 Appropriations
Sent MDA Comments to U.S. Department of Housing and Urban Development on Implementation of the Fair Housing Acts Disparate Impact Standard Proposed Rule
Advocated for the Social Security Claims Processing Improvement Act Supported the ABC Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Energy, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Housing & Urban Development, Dept of (HUD), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), U.S. Architectural & Transportation Barriers Compliance Board (ACCESS), Veterans Affairs, Dept of (VA)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2025 · fourth_quarter · Q4
Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments for Passage of the Senate FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill Filed Comments re: Senate Special Committee on Aging Hearing "Aging in Place: The Impact of Community during the Holidays" Filed Comments re: Urgent Consideration of Enhanced Premium Tax Credits (eAPTCs) Extension and Labor/HHS Appropriations Filed Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Filed Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease (11.19.2025) Joined Coalition Comments re: Senate Finance Committee Hearing: The Rising Cost of Health Care: Considering Meaningful Solutions for All Americans Joined Coalition Comments re: House Ways and Means Subcommittee Hearing: Modernizing Care Coordination to Prevent and Treat Chronic Disease Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Joined Coalition Comments Urging Congress to Find a Solution to Expiration of eAPTCs Joined Coalition Comments Calling on Appropriations Leaders to Finalize NIH Funding Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Joined Coalition Comments to Administration Officials Regarding Junk Insurance Plans Marketplace Integrity and Affordability Rule Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan Advocated for the passage of the Newborn Screening Saves Lives Act
Encouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024.
Joined Coalition Comments to U.S. Dept. of Homeland Security on Proposed Public Charge Ground of Inadmissibility Rule
Joined Coalition Comments to U.S. Consumer Financial Protection Bureau re: Fair Credit Reporting Act (FCRA) Guidance
Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Joined Coalition Comments for Passage of the Senate FY 2026 Labor, Health and Human Services, Education, and Related Agencies Appropriations Bill Joined Coalition Comments Calling on Appropriations Leaders to Finalize NIH Funding
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Joined Coalition Comments to U.S. FDA for Feedback on Prescription Drug User Fee Act (PDUFA) VIII Stakeholder Consultation Meetings Joined Coalition Comments to FDA Urging Use of the Accelerated Approval Pathway for LGMD Therapies Advocated for the finalization of the Muscular Dystrophy Coordinating Committee action plan
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Joined Coalition Comments Re: Support for the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) Administrator Oz on Implementation of New Community Engagement Requirements Enacted by H.R. 1 Supported the ABC Act
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Supported the reintroduction of the Patient Access Act Filed Comments re: Urgent Consideration of Enhanced Premium Tax Credits (eAPTCs) Extension and Labor/HHS Appropriations Joined Coalition Comments Urging Congress to Find a Solution to Expiration of eAPTCs Joined Coalition Comments Re: Renewing Expiring Enhanced Premium Tax Credits (eAPTCs) Joined Coalition Comments to Administration Officials Regarding Junk Insurance Plans Marketplace Integrity and Affordability Rule
Joined Coalition Comments re: Accessibility Considerations to Ensure Access and Safety for Disabled Travelers in Autonomous Vehicle Legislation and Provisions in Surface Transportation Reauthorization Supported the DATA Act
Joined Coalition Comments Calling for Senate Oversight Hearing re: Department of Education RIFs & Impacts on Individuals with Disabilities Education Act and Section 504 of the Rehabilitation Act of 1973 Joined Coalition Comments Calling for Reversal of Layoffs at U.S. Department of Education and Impacts on the Disability Community Joined Coalition Comments to Secretary of Education McMahon Re: The Use of the Phrase Special Needs in Official U.S. Department of Education Communications Advocated for the IDEA Full Funding Act Advocated for a resolution celebrating the 50th anniversary of the IDEA
Filed Comments re: Senate Special Committee on Aging Hearing "Aging in Place: The Impact of Community during the Holidays" Advocated for the Social Security Claims Processing Improvement Act Supported the ABC Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Consumer Financial Protection Bureau (CFPB), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Homeland Security, Dept of (DHS), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)
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2025 · third_quarter · Q3
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported the ABC Act Supported legislation that increases access to home and community-based services Supported the HEARD Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Submitted MDA Comments to HHS Sec. Kennedy on Personal Responsibility and Work Opportunity Reconciliation Act of 1996; Interpretation of Federal Public Benefit Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit Joined Coalition Comments to HHS on Ensuring Lawful Regulation and Unleashing Innovation to Make America Healthy Again Request for Information Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514
Joined Coalition Comments Urging Maintenance of the Provisions in the Final Rule, Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Joined Coalition Comments to House and Senate Transportation Appropriations Leaders on FY26 Funding for U.S. Access Board
Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Joined Coalition Comments to House and Senate Appropriations Leaders on FY26 Education Appropriations Joined Coalition Comments to House and Senate Labor, Health and Human Services (HHS), and Education Appropriations Leaders on Assistive Technology (AT) Act Programs Joined Coalition Comments to House and Senate Transportation Appropriations Leaders on FY26 Funding for U.S. Access Board
Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Submitted joint MDA and PPMD Comments for Consideration of Adding Duchenne Muscular Dystrophy to the Recommended Uniform Screening Panel Submitted MDA Comments on Energy and Commerce Subcommittee on Health Markup of the Newborn Screening Saves Lives Reauthorization Act (H.R.4709) Joined Coalition Comments to House Appropriations Leaders Calling for Robust Federal Funding for Medical Research in FY26 Budget Supported muscular dystrophy research efforts at the CDC
Opposed the One Big Beautiful Bill Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act Joined Coalition Comments in Opposition to CMS/OMB Proposal to Include Ostomy, Tracheostomy, and Urological Supplies in Medicare Competitive Bidding Submitted MDA Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY2026 Home Health Prospective Payment System Proposed Rule: Medicare Competitive Bidding of Ostomy and Urological Supplies Joined Coalition Comments to CMS Administrator Oz re: CY 2026 Home Health Prospective Payment System Proposed Rule: Competitive Bidding of Off-the-Shelf Orthotics, Accreditation Organizations, and Prior Authorization Joined Coalition Comments to CMS Administrator Oz re: Concerns Regarding the WISeR Model and Access to Medically Necessary Rehabilitation Care Joined Coalition Comments to CMS Administrator Oz on ITEM Coalition Support for a More Robust Pathway for Medicare Coverage of Breakthrough Technologies Joined Coalition Comments to Centers for Medicare and Medicaid Services (CMS) on Contract Year (CY) 2026 Medicare Prescription Payment Plan Program Joined Coalition Comments in Support of the Improving Seniors Timely Access to Care Act, S.1816/H.R. 3514 Supported the ABC Act
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Supported the reintroduction of the Patient Access Act Joined Coalition Comments on Repealing H.R. 1 Health Provisions or Medicaid Provisions and Extending APTCs Joined Coalition Comments Urging Pharmacy Benefit Manager (PBM) Reforms Joined Coalition Comments to Congressional Leadership on Reauthorizing the Enhanced Advance Premium Tax Credit
Joined Coalition Comments Urging Maintenance of the Provisions in the Final Rule, Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Joined Coalition Comments to House and Senate Transportation Appropriations Leaders on FY26 Funding for U.S. Access Board Supported the DATA Act
Joined Coalition Comments to Secretary of Education McMahon Re: Importance of State Assessments and Strong Accountability for Students with Disabilities Joined Coalition Comments Urging to Maintain All Current Grants Under Part D of the Individuals with Disabilities Education Act (IDEA) Joined Coalition Comments to U.S. Secretary of Education McMahon re: U.S. Department of Education (ED) Proposed Priority: Advancing Artificial Intelligence in Education Joined Coalition Comments to House and Senate Appropriations Leaders on FY26 Education Appropriations Joined Coalition Comments to House and Senate Labor, Health and Human Services (HHS), and Education Appropriations Leaders on Assistive Technology (AT) Act Programs
Supported the ABC Act
Supported the Credit for Caring Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Housing & Urban Development, Dept of (HUD), Internal Revenue Service (IRS), Labor, Dept of (DOL), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), U.S. Architectural & Transportation Barriers Compliance Board (ACCESS)
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2025 · second_quarter · Q2
Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments and a Meeting Request to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Joined Coalition Comments to FDA Commissioner Makary Requesting Town Hall Meetings with Patient Advocacy Organizations Joined Coalition Comments to Congressional Leadership in Support of National Institutes of Health Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health (6.5.2025) Wrote a Letter to Chair and Ranking Member of the House and Senate Appropriations Subcommittees on Labor, Health, Human Services and Education on FY26 Newborn Screening Program Appropriations Joined Coalition Comments to Congressional Leadership on Support for NIH and Brain Health Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Joined Coalition Comments to HHS Secretary Kennedy on Elimination of Advisory Committee on Heritable Disorders in Newborns and Children Joined Coalition Comments in Support of the HCBS Settings Rule Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Joined Coalition Comments in Support of the CONNECT for Health Act Supported the Accelerating Kids' Access to Care Act Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act
Joined Coalition Comments to DOT re: Ensuring Lawful Regulation; Reducing Regulation and Controlling Regulatory Costs RFI
Joined Coalition Comments on Confirmation of Frank Bisignano as Social Security Commissioner Joined Coalition Comments to Social Security Administration on Security Authentication PIN Emergency Request
Supported the Credit for Caring Act Joined Coalition Comments in Support of Mobility Means Freedom Tax Credit Act
Submitted MDA Comments to U.S. Department of Energy on Section 504 Regulations Changes
Opposed the One Big Beautiful Bill Act Joined Coalition Comments and a Meeting Request to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Joined Coalition Comments in Support of the HCBS Settings Rule Joined Coalition Comments in Support of the CONNECT for Health Act Supported the Accelerating Kids' Access to Care Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act
Joined Coalition Comments to House and Senate Appropriators to Reject Proposed Cuts to HHS (4.25.2025) Joined Coalition Comments to House and Senate Education Appropriations Leaders on Technical Assistance Centers Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health Wrote a Letter to Chair and Ranking Member of the House and Senate Appropriations Subcommittees on Labor, Health, Human Services and Education on FY26 Newborn Screening Program Appropriations Joined Coalition Comments to Congressional Appropriations Leaders on Administrations Draft Fiscal Year 2026 Budget for the Department of Health and Human Services Joined Coalition Comments to Congressional Appropriations Leads on FY26 Education Appropriations Supported a joint request for Fiscal Year 2026 Appropriations for ALS Programs Supported efforts to add FSHD to the Peer Reviewed Medical Research Program
Joined Coalition Comments to FDA Commissioner Makary Requesting Town Hall Meetings with Patient Advocacy Organizations Joined Coalition Comments to Congressional Leadership in Support of National Institutes of Health Joined Coalition Comments to Congressional Appropriations Leaders in Support of National Institutes of Health Joined Coalition Comments to Congressional Leadership on Support for NIH and Brain Health Joined Coalition Comments to House Appropriations Leaders on Biomedical Research Joined Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Continued efforts to reauthorize the ACT for ALS
Supported the Accelerating Kids' Access to Care Act Opposed the One Big Beautiful Bill Act Joined Coalition Comments Related to H.R. 2528, the Association Health Plans Act and H.R. 2571, the Self-Insurance Protection Act Joined Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation Joined Coalition Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Submitted MDA Comments in Response to the U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) for the Marketplace Integrity and Affordability Proposed Rule Supported the reintroduction of the Patient Access Act
Joined Coalition Comments to DOT re: Ensuring Lawful Regulation; Reducing Regulation and Controlling Regulatory Costs RFI
Joined Coalition Comments to House and Senate Education Appropriations Leaders on Technical Assistance Centers Joined Coalition Comments on Introduction of IDEA Full Funding Act Joined Coalition Comments to Congressional Appropriations Leads on FY26 Education Appropriations Submitted MDA Comments in Support of the IDEA Full Funding Act
Filing targets: Agriculture, Dept of (USDA), Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Energy, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Housing & Urban Development, Dept of (HUD), Internal Revenue Service (IRS), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT)
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2025 · first_quarter · Q1
Submitted a joint request for Fiscal Year 2026 Appropriations for ALS Programs (3.18.2025) Supported appropriations for newborn screening programs at HRSA and CDC
Filed MDA Comments in Response to NIH Strategic Plan Request for Comment (3.12.2025) Opposed Funding Cuts in Recently Introduced Continuing Resolution (3.11.2025) Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Commenced efforts to reauthorize the ACT for ALS
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2024 · fourth_quarter · Q4
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24)
Supported the RISE Act Supported the Full Funding is the Right IDEA Act Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations & Use of Assistive Technology in PreK-16 Schools (11.13.24)
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
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2024 · third_quarter · Q3
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Joined coalition comments on the process the Social Security Administration takes in requesting additional information Supported the SSI Savings Penalty Elimination Act
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2024 · second_quarter · Q2
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS
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2024 · first_quarter · Q1
Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for provisions addressing problems within the pharmacy benefit manager industry Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported changes to the Inflation Reduction Act pertaining to rare disease therapeutic eligibility for Medicare negotiation Provided comments to the House Education and Workforce Committee on their ERISA RFI Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Supported the Benefit Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act
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2023 · fourth_quarter · Q4
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Submitted comments to the FDA on individualized gene therapies Supported the inclusion of certain provisions within the Pandemic and All-Hazards Preparedness Act reauthorization Endorsed the NIH Clinical Trial Diversity Act Provided comments to the FDA on their proposed rule on lab-developed tests Supported the Ensuring Patient Access to Critical Breakthrough Products Act
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more
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2023 · third_quarter · Q3
Advocated for the protection of the Medicaid program to the White House and Congress Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Endorsed the Telehealth Benefit Expansion for Workers Act Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Supported the inclusion of certain provisions within the Pandemic and All-Hazards Preparedness Act reauthorization Submitted comments to the FDA on decentralized clinical trial designs Endorsed the NIH Clinical Trial Diversity Act Joined coalition comments on CMSs national coverage analysis evidence reviews and the emerging technology add-on payment program Provided comments to the Federal government on medical debt Provided comments to the FDA on the approach the Agency should take with neuromuscular disease treatments
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2023 · second_quarter · Q2
Advocated for the protection of the Medicaid program to the White House and Congress Supported CMSs efforts to cover seat elevation systems Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Filed comments with CMS on their proposed drug pricing negotiations framework Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Provided comments on healthcare affordability to key congressional committees Joined a letter on Medicare Part D redesign proposals Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Endorsed the Telehealth Benefit Expansion for Workers Act Advocated for access to ACA plans for DACA recipients Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments supporting Intermittent Catheter Coding Reform Commented on the Medicaid Managed Care Rule
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2023 · first_quarter · Q1
Provided viewpoints on the unaffordability of healthcare to the Ways and Means Committee Provided comments to HHS on Benefit and Payment Parameters Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act
Sent a coalition letter to Congress supporting SSA Funding Supported enhanced funding for NIAMS and NCATS Supported robust appropriations for the newborn screening program.
Supported enhanced funding for NIAMS and NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program.
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2022 · fourth_quarter · Q4
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS). Advocated for greater funding amounts going towards Department of Education programs focused on educational offerings for those with disabilities. Advocated for additional funding for the Social Security Administration to implement programs for those with disabilities
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health. Advocated for appropriations for HHS, NIH, and FDA to implement the ACT for ALS. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the end-of-year omnibus legislation. Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2022 · third_quarter · Q3
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Supported greater appropriations for Consumer Assistance Programs Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Commented on fixing the ACA Family Glitch to the Treasury Department Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583) Provided comments to Congress on portions of the Inflation Reduction Act, including the Medicare out-of-pocket cap and smoothing mechanisms. Joined coalition comments on the CY 2023 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies Proposed Rule. Provided policy suggestions to CMS on the annual Notice of Benefit and Payment Parameters. Advocated for greater coverage of seat elevation systems and standing wheelchairs within the Medicare program. Advocated for the Access to Genetic Counselors Act
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2022 · second_quarter · Q2
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Submitted recommendations to the Senate Commerce Committee on accessible air travel within the FAA reauthorizations
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Supported substantially increased funding to HCBS 1915 waivers. Advocated for the passage of the STOP the WAIT Act (H.R.4386 and S.2496). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Drafted recommendations to the Centers for Medicare and Medicaid Services on strengthening the Medicaid program. Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2022 · first_quarter · RA
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2022 · first_quarter · Q1
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for increased funding of home and community-based services (HCBS). Advocated for passage of the Disability Employment Incentive Act. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Provided feedback and comments to the Senate's PREVENT Act.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2022 · first_quarter · RA
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2021 · fourth_quarter · Q4
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for robust funding for the NIH and FDA through increased appropriations. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS)
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Supported substantially increased funding to HCBS 1915 waivers as part of the Build Back Better Act.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2021 · third_quarter · Q3
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the passage of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for the protection of the Orphan Drug Tax Credit as part of the Build Back Better Act. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program as part of the Build Back Better Act. Supported the Competitive Integrated Employment Grants program as part of the Build Back Better Act. Advocated for passage of the Disability Employment Incentive Act.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2021 · second_quarter · Q2
Advocated for enhanced COBRA benefits for individuals who have lost their job but are seeking insurance. Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to future legislation.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the passage of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for additional funding of the Consumer Assistance Programs (CAPs) available to individuals seeking health insurance.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2021 · first_quarter · Q1
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for reintroduction of the ACT for ALS Act. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for a variety of items to included within the American Rescue Plan Act (H.R.1319) including Medicaid coverage provisions, marketplace affordability and access provisions, COBRA modifications, and public health provisions pertaining to access to care, treatment, and vaccines.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · fourth_quarter · Q4
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · third_quarter · Q3
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · second_quarter · Q2
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · first_quarter · Q1
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · fourth_quarter · Q4
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · third_quarter · Q3
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid, state health programs, and other services. Advocated in favor of activities to improve outreach and enrollment for individuals to who acquire health insurance on the individual marketplace including: (1) a provision added to H.R. 987 that would require the Department of Health and Human Services to resume activities related to outreach and educational activities for open enrollment; and (2) H.R.1386, Expand Navigators Resources for Outreach, Learning, and Longevity (ENROLL) Act of 2019. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Advocated maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
Supported the Accelerating Kids' Access to Care Act (3.26.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Opposed U.S. House Adoption of Budget Resolution (2.26.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Defended Medicaid from potential harmful cuts Supported legislation to expand access to HCBS Supported the reintroduction of the MVP Act Supported the reintroduction of the ALS Better Care Act Supported the reintroduction of the Access to Genetic Counseling Services Act
Supported the Accelerating Kids' Access to Care Act (3.26.2025) Submitted a joint request for Fiscal Year 2026 Appropriations for ALS Programs (3.18.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Filed MDA Comments in Response to NIH Strategic Plan Request for Comment (3.12.2025) Opposed Funding Cuts in Recently Introduced Continuing Resolution (3.11.2025) Joined Coalition Comments on U.S. Department of Health and Human Services Removal of Notice and Comment Opportunities (3.6.2025) Joined Comments on Legislative Efforts to Undermine the Regulatory Process and Weaken Public Health Protections (3.4.2025) Opposed U.S. House Adoption of Budget Resolution (2.26.2025) Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities (2.25.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Expressed opposition to effort that caps indirect costs in NIH grants to 15% Joined Coalition Comments on Wheelchair Repairs and Maintenance Policy Recommendations (2.5.2025) Joined Coalition Comments on Trump Administration Defending No-Cost Preventive Care in Braidwood Case (1.30.2025) Joined Coalition Comments on Wheelchair Repair Solutions and Principles (1.29.2025) Joined Coalition Comments to President Trump on Rare Disease Community Priorities (1.24.2025) Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Commenced efforts to reauthorize the Newborn Screening Saves Lives Reauthorization Act Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Defended Medicaid from potential harmful cuts Commenced efforts to reauthorize the ACT for ALS Supported the reintroduction and passage of the RARE Act Supported Pharmacy Benefit Manager (PBM) Reform Patient Priorities (2.25.2025) Supported the reauthorization of the Rare Pediatric Disease PRV Program as part of the Gives Kids a Chance Act Commenced efforts to reauthorize the ACT for ALS Supported the reintroduction and passage of the RARE Act Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act
Joined a letter to Secretary of Transportation Duffy on the Air Travel Experience for Disabled Veterans and Passengers with Disabilities (2.25.2025) Filed MDA Comments on Airline Passenger Rights Notice of Proposed Rulemaking (NPRM) (2.10.2025) Filed MDA Comments on Nondiscrimination on the Basis of Disability Air Travel Information Collection Advanced NPRM (2.10.2025)
Supported the Accelerating Kids' Access to Care Act (3.26.2025) Joined a coalition comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025) Supported legislation on Securing Access to Telehealth Services (2.24.2025) Joined Coalition Comments on Trump Administration Defending No-Cost Preventive Care in Braidwood Case (1.30.2025) Supported legislation to expand access to HCBS Supported the reintroduction of the Patient Access Act
Joined a letter to Secretary of Transportation Duffy on the Air Travel Experience for Disabled Veterans and Passengers with Disabilities (2.25.2025) Filed MDA Comments on Airline Passenger Rights Notice of Proposed Rulemaking (NPRM) (2.10.2025) Filed MDA Comments on Nondiscrimination on the Basis of Disability Air Travel Information Collection Advanced NPRM (2.10.2025)
Joined Coalition Comments on U.S. Secretary of Education Nominee Linda McMahon (2.6.2025) Opposed efforts by the Administration to dismantle the Department of Education
Expressed concern to Congress on Ongoing Developments at the Social Security Administration (SSA) (3.20.2025) Joined Coalition Comments in Support of the SSI Savings Penalty Elimination Act (3.10.2025)
Supported the Credit for Caring Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Internal Revenue Service (IRS), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT)
Joined Amici Curiae Brief to U.S. District Court in Deferred Action for Childhood Arrivals Case, Kansas et al. v. U.S. (10.2.24)
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Joined Coalition Comments to President Biden Urging Finalization of Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule (11.26.2024) Discussed the implementation of the FAA reauthorization with congressional partners
Joined Coalition Comments to President Biden Urging Finalization of Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule (11.26.2024)
Supported the ENABLE Act, legislation to better amplify the importance of ABLE accounts
Supported the SSI Savings Penalty Elimination Act
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Filed Comments to Federal Emergency Management Agency (FEMA) on Proposed Rule to Update FEMA Public Assistance Regulations (10.18.24)
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Prepared for the reauthorization of the ACT for ALS Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Federal Emergency Management Agency (FEMA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Internal Revenue Service (IRS), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT)
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Testified in front of an FDA CBER Patient Listening Session Prepared for the reauthorization of the ACT for ALS Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program.
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Filed comments, and joined coalition comments, on the Consumer Financial Protection Bureau Proposed Medical Debt Rule Filed comments to the FDA on the Platform Technology Designation Program for Drug Development Guidance for Industry Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule Joined Coalition Comments in Support of the Think Differently Database Act Testified in front of an FDA CBER Patient Listening Session Filed comments to FDA in Response to Diversity Action Plan Guidance Prepared for the reauthorization of the ACT for ALS
Joined coalition comments on online systems to assist disabled voters in the voting registration process
Joined coalition comments on the role of AI in assisting those with disabilities in transportation Joined Coalition Comments to the Department of Transportation Urging Finalization of the Wheelchair User Experience Rule
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule
Supported the ENABLE Act, legislation to better amplify the importance of ABLE accounts
Supported the RISE Act Supported the Full Funding is the Right IDEA Act
Joined coalition comments on the role of AI in assisting those with disabilities in transportation Joined Coalition Comments to the Department of Transportation Urging Finalization of the Wheelchair User Experience Rule
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Election Assistance Commission (EAC), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Internal Revenue Service (IRS), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT)
Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act
Joined Coalition Comments to DOJ on Accessible Voting (5.30.24)
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Supported the ALS Better Care Act Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Joined Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs Provided comments to Energy and Commerce Committee on Medicaid access Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry
Joined Coalition Comments on SNAP in House Farm Bill Reauthorization
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Joined comments on education appropriations for those with disabilities Joined Coalition Comments on Supporting Non-Defense Discretionary Federal Funding in FY25
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported HHSs final rule on section 1557 of the ACA Joined Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24) Joined coalition comments on Medicare Payment Plans Joined Coalition Comments to CMS in Response to RFI on Medicare Advantage Data Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies
Submitted coalition comments to DOT on the comment deadline extension on their proposed wheelchair users accessible air travel rule Advocated for the final passage of the FAA reauthorization Filed joint and individual comments on DOTs proposed rule on air travel accessibility
Advocated for stronger protections of individuals with disabilities when engaging with TSA Submitted coalition comments to DOT on the comment deadline extension on their proposed wheelchair users accessible air travel rule Advocated for the final passage of the FAA reauthorization Filed joint and individual comments on DOTs proposed rule on air travel accessibility
Joined coalition letter supporting appropriations for newborn screening Testified in front of the ACHDNC on newborn screening Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the Benefit Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS
Supported the RISE Act Supported the Full Funding is the Right IDEA Act Joined comments on education appropriations for those with disabilities
Filing targets: Agriculture, Dept of (USDA), Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Transportation Security Administration (TSA), Transportation, Dept of (DOT)
Advocated for the protection of the Medicaid program to the White House and Congress Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act Supported robust appropriations for the newborn screening program. Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Supported the passage of the Creating Hope Reauthorization Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Supported the NIH Clinical Trial Diversity Act Supported changes to the Inflation Reduction Act pertaining to rare disease therapies and timelines for negotiation Supported the Ensuring Patient Access to Critical Breakthrough Products Act of 2023 Supported the Benefit Act Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Joined coalition comments to DOJ on the Proposed Rule on Accessible MDE Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Joined coalition comments supporting the proposed rescission of the AHP rule Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Provided comments to the House Education and Workforce Committee on their ERISA RFI Joined coalition comments on DOJ Complaint Data Reports
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported accessibility provisions within the Securing Growth and Robust Leadership in American Aviation Act of 2023 Advocated for stronger protections of individuals with disabilities when engaging with TSA
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more
Supported the RISE Act Supported the Full Funding is the Right IDEA Act
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Supported the Restore Protections for Dialysis Patients Act Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D
Joined coalition comments on DOJ Complaint Data Reports Joined coalition comments to DOJ on the Proposed Rule on Accessible MDE
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Ensuring Patient Access to Critical Breakthrough Products Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Joined coalition comments supporting the proposed rescission of the AHP rule Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Provided comments to the House Education and Workforce Committee on their ERISA RFI
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Endorsed the NIH Clinical Trial Diversity Act Supported the Ensuring Patient Access to Critical Breakthrough Products Act Provided comments to the House Education and Workforce Committee on their ERISA RFI Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Transportation Security Administration (TSA), Transportation, Dept of (DOT)
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported accessibility provisions within the Securing Growth and Robust Leadership in American Aviation Act of 2023 Advocated for stronger protections of individuals with disabilities when engaging with TSA
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported a final rule intended to make lavatories on single aisle aircrafts accessible.
Supported the RISE Act Supported the Full Funding is the Right IDEA Act
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Ensuring Patient Access to Critical Breakthrough Products Act Joined a letter to President Biden on DACA eligibility for ACA plans Submitted comments to the House Ways and Means Committee on the No Surprises Act
Advocated for the protection of the Medicaid program to the White House and Congress Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Endorsed the Telehealth Benefit Expansion for Workers Act Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Supported the NIH Clinical Trial Diversity Act Provided comments to the House Ways and Means Committee on the No Surprises Act Joined coalition comments on ACA-plan eligibility for DACA participants Provided comments to the FDA on individualized cell and gene therapy products Supported changes to the Inflation Reduction Act pertaining to rare disease therapies and timelines for negotiation Supported the Ensuring Patient Access to Critical Breakthrough Products Act of 2023
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Provided comments to the House Ways and Means Committee on Medicaid unwinding
Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for provisions addressing problems within the pharmacy benefit manager industry Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported changes to the Inflation Reduction Act pertaining to rare disease therapeutic eligibility for Medicare negotiation Provided comments to the House Ways and Means Committee on the No Surprises Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Justice, Dept of (DOJ), Natl Institutes of Health (NIH), SENATE, Transportation Security Administration (TSA), Transportation, Dept of (DOT)
Supported enhanced funding for NCATS Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more
Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Submitted comments to the FDA on decentralized clinical trial designs Supported the inclusion of certain provisions within the Pandemic and All-Hazards Preparedness Act reauthorization Endorsed the NIH Clinical Trial Diversity Act Provided comments to the FDA on the approach the Agency should take with neuromuscular disease treatments
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Endorsed the Telehealth Benefit Expansion for Workers Act Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments on CMSs national coverage analysis evidence reviews and the emerging technology add-on payment program Provided comments to the Federal government on medical debt
Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for provisions addressing problems within the pharmacy benefit manager industry Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments on CMSs national coverage analysis evidence reviews and the emerging technology add-on payment program
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Endorsed the Telehealth Benefit Expansion for Workers Act Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments on CMSs national coverage analysis evidence reviews and the emerging technology add-on payment program
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported a final rule intended to make lavatories on single aisle aircrafts accessible.
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported accessibility provisions within thenSecuring Growth and Robust Leadership in American Aviation Act of 2023 Supported the promulgation of the final Lavatories on Single-Aisle Airplanes rule. Advocated for stronger protections of individuals with disabilities when engaging with TSA
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation Security Administration (TSA), Transportation, Dept of (DOT)
Advocated for the protection of the Medicaid program to the White House and Congress Supported CMSs efforts to cover seat elevation systems Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Filed comments with CMS on their proposed drug pricing negotiations framework Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Provided comments on healthcare affordability to key congressional committees Joined a letter on Medicare Part D redesign proposals Endorsed the Telehealth Benefit Expansion for Workers Act Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments supporting Intermittent Catheter Coding Reform Commented on the Medicaid Managed Care Rule
Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Provided comments to the FDA on their draft guidance on externally-controlled clinical trials. Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments supporting Intermittent Catheter Coding Reform Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported accessibility provisions within the American Aviation Act of 2023
Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Filed comments with CMS on their proposed drug pricing negotiations framework Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for provisions addressing problems within the pharmacy benefit manager industry Provided comments on healthcare affordability to key congressional committees Joined a letter on Medicare Part D redesign proposals Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments supporting Intermittent Catheter Coding Reform Commented on the Medicaid Managed Care Rule
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities
Supported enhanced funding for NCATS Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more
Advocated for the protection of the Medicaid program to the White House and Congress Supported CMSs efforts to cover seat elevation systems Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Filed comments with CMS on their proposed drug pricing negotiations framework Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Provided comments to the FDA on their draft guidance on externally-controlled clinical trials. Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Provided comments on healthcare affordability to key congressional committees Joined a letter on Medicare Part D redesign proposals Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Endorsed the Telehealth Benefit Expansion for Workers Act Advocated for access to ACA plans for DACA recipients Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Joined coalition comments supporting Intermittent Catheter Coding Reform Commented on the Medicaid Managed Care Rule Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Defense, Dept of (DOD), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT)
Provided comments to CMS on their proposed rule on prior authorization Provided comments to HHS on Benefit and Payment Parameters Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities
Advocated for the protection of the Medicaid program to the White House and Congress Provided viewpoints on the unaffordability of healthcare to the Ways and Means Committee Supported CMSs efforts to cover seat elevation systems Provided comments to CMS on their proposed rule on prior authorization Supported enhanced funding for NIAMS and NCATS Provided comments to CMS on Medicare Advantage Rule Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Provided comments to CMS on low income subsidies for those in Medicare Supported the Protecting Healthcare for All Patients Act Provided comments to HHS on Benefit and Payment Parameters Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program.
Advocated for the protection of the Medicaid program to the White House and Congress Provided viewpoints on the unaffordability of healthcare to the Ways and Means Committee Supported CMSs efforts to cover seat elevation systems Provided comments to CMS on their proposed rule on prior authorization Provided comments to CMS on Medicare Advantage Rule Provided comments to CMS on low income subsidies for those in Medicare Supported the Protecting Healthcare for All Patients Act Worked on the introduction of the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT)
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Advocated for the Access to Genetic Counselors Act Called for the passage of the Medicare Orthotic & Prosthetic Patient-Centered Care Act Provided comments to the Department of Health and Human Services on how best to streamline eligibility and enrollment within the Medicaid and CHIP programs. Advocated to the Centers for Medicare and Medicaid Services on Medicaid access and the COVID-19 public health emergency
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the end-of-year omnibus package. Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Supported greater appropriations for Consumer Assistance Programs Advocated for the passage of the RARE Act (S. 4185) as part of the end-of-year omnibus package. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583) Advocated for the Access to Genetic Counselors Act Provided recommendations to the Department of Health and Human Services on the implementation of section 1557 of the Affordable Care Act. Applauded the Department of Health and Human Services in their closing of the family glitch within the Affordable Care Act. Advocated to the Centers for Medicare and Medicaid Services on Medicaid access and the COVID-19 public health emergency Called for passage of the Preserving Patient Access to Home Infusion Act (S. 2652/H.R. 5067) Provided comments to CMS on ensuring equity in accessing health care. Provided comments to the Department of Health and Human Services on how best to streamline eligibility and enrollment within the Medicaid and CHIP programs. Called for recipients of the Deferred Action for Childhood Arrivals program to access Federal health programs and offerings. Provided comments to the CMS on the implementation of the No Surprises Act. Called for greater funding of the National Center for Advancing Translational Sciences (NCATS) Called for the passage of the Medicare Orthotic & Prosthetic Patient-Centered Care Act Provided comments to CMS on National Directory of Healthcare Providers and Services
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for accessible air travel priorities to be included in the 2023 FAA reauthorization.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Supported passage of the Ending the Diagnostic Odyssey Act Provided comments to CMS on National Directory of Healthcare Providers and Services Provided comments to the CMS on the implementation of the No Surprises Act. Called for passage of the Preserving Patient Access to Home Infusion Act (S. 2652/H.R. 5067) Applauded the Department of Health and Human Services in their closing of the family glitch within the Affordable Care Act. Provided recommendations to the Department of Health and Human Services on the implementation of section 1557 of the Affordable Care Act.
Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act.
Advocated for funding and implementation of the ACT for ALS, a law that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for reforms to the FDA Accelerated Approval program as part of the end-of-year omnibus package Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for further accessible air travel reforms within the 2023 FAA reauthorization.
Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Council on Disability, Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), Treasury, Dept of
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health. Advocated for appropriations for HHS, NIH, and FDA to implement the ACT for ALS. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for further accessible air travel reforms within the 2023 FAA reauthorization.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS).
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Supported substantially increased funding to HCBS 1915 waivers. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Provided comments to Congress on portions of the Inflation Reduction Act, including the Medicare out-of-pocket cap and smoothing mechanisms. Joined coalition comments on the CY 2023 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies Proposed Rule. Provided policy suggestions to CMS on the annual Notice of Benefit and Payment Parameters. Advocated for greater coverage of seat elevation systems and standing wheelchairs within the Medicare program. Advocated for the Access to Genetic Counselors Act
Advocated for funding and implementation of the ACT for ALS, a law that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Supported passage of the Ending the Diagnostic Odyssey Act
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Council on Disability, Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), Treasury, Dept of
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS). Asked for greater appropriations to assist schools with providing services to individuals with disabilities. Supported greater appropriations for Consumer Assistance Programs
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Supported the enactment of the SSI Restoration Act. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Commented on fixing the ACA Family Glitch to the Treasury Department Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Submitted recommendations to the Senate Commerce Committee on accessible air travel within the FAA reauthorizations
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health. Advocated for appropriations for HHS, NIH, and FDA to implement the ACT for ALS. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000)
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Drafted recommendations to the Centers for Medicare and Medicaid Services on strengthening the Medicaid program. Supported the Administrations efforts to withdraw the previous Administrations Public Charge rule. Submitted recommendations to the Department of Health and Human Services on the implementation of section 504 of the Rehabilitation Act. Supported greater appropriations for Consumer Assistance Programs Advocated to the Architectural and Transportation Barriers Compliance Board (ATBCB) for amended Standards for Accessible Medical Diagnostic Equipment. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Commented on fixing the ACA Family Glitch to the Treasury Department Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583)
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Supported passage of the Ending the Diagnostic Odyssey Act Commented on fixing the ACA Family Glitch to the Treasury Department Supported greater appropriations for Consumer Assistance Programs
Advocated for funding and implementation of the ACT for ALS, a law that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Education, Dept of, Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Council on Disability, Natl Institutes of Health (NIH), SENATE, Social Security Administration (SSA), Transportation, Dept of (DOT), Treasury, Dept of
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies Advocate for legislation that increases travel, employment, education, and other opportunities for individuals with disabilities.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Supported substantially increased funding to HCBS 1915 waivers. Advocated for the passage of the STOP the WAIT Act (H.R.4386 and S.2496).
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Supported the enactment of the SSI Restoration Act. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC).
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency.
Advocated for funding and implementation of the ACT for ALS, a law that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Provided feedback and comments to the Senate's PREVENT Act.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for robust funding for the NIH and FDA through increased appropriations. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health. Advocated for appropriations for HHS, NIH, and FDA to implement the ACT for ALS. Provided feedback and comments to the Senate's PREVENT Act.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Health Resources & Services Administration (HRSA), Labor, Dept of (DOL), Natl Council on Disability, Natl Institute of Standards & Technology (NIST), Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT), Treasury, Dept of
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for HHS Agencies
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Advocated against changes to the Orphan Drug Tax Credit as part of the Build Back Better Act. The ODTC is an integral incentive for developing new therapies for rare diseases. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the passage of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for the passage of the Air Carrier Access Amendments Act (S.642 and H.R.1696) Advocated for the protection of the Orphan Drug Tax Credit as part of the Build Back Better Act. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program as part of the Build Back Better Act. Supported the Competitive Integrated Employment Grants program as part of the Build Back Better Act. Advocated for increased funding of home and community-based services (HCBS) as part of the Build Back Better Act Advocated for passage of the Disability Employment Incentive Act. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Supported the inclusion of the Competitive Integrated Employment Grants Program within the Build Back Better Act. Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program as part of the Build Back Better Act.
Advocated for passage of the ACT for ALS, legislation that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated against changes to the Orphan Drug Tax Credit, a critical incentive for development new treatments for rare diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706)
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Labor, Dept of (DOL), Natl Institute of Standards & Technology (NIST), Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT), Treasury, Dept of
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health.
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Supported the inclusion of the Competitive Integrated Employment Grants Program within the Build Back Better Act. Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program as part of the Build Back Better Act.
Advocated for passage of the ACT for ALS, legislation that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated against changes to the Orphan Drug Tax Credit, a critical incentive for development new treatments for rare diseases.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Advocated against changes to the Orphan Drug Tax Credit as part of the Build Back Better Act. The ODTC is an integral incentive for developing new therapies for rare diseases. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits. Commented on preferred approaches to creating a public option.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for robust funding for the NIH and FDA through increased appropriations. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS)
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Commented on MDA's preferred approach to the creation of a public option. Supported substantially increased funding to HCBS 1915 waivers as part of the Build Back Better Act.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Labor, Dept of (DOL), Natl Institute of Standards & Technology (NIST), Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT), Treasury, Dept of
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for further health insurance marketplace financial and COBRA enhancements as part of future legislative packages.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased appropriations for consumer assistance programs. Advocated for robust funding for the NIH and FDA through increased appropriations.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic. Advocated for passage of the ACT for ALS, legislation that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases.
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Labor, Dept of (DOL), Natl Institute of Standards & Technology (NIST), Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT), Treasury, Dept of
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Supported enhancements to Medicaid coverage as part of the American Recovery Plan (H.R.1319)
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for further health insurance marketplace financial and COBRA enhancements as part of the American Recovery Plan.
Advocated for enhanced COBRA benefits for individuals who have lost their job but are seeking insurance.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout theCOVID-19 pandemic. Advocated for the reintroduction of the ACT for ALS, legislation that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE, Transportation, Dept of (DOT)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing and robust funding of the national newborn screening program.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing and robust funding of the national newborn screening program.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation, Dept of (DOT)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation, Dept of (DOT)