MUSCULAR DYSTROPHY ASSOCIATION, INC.

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

Client expense: $90,000 · Firm income: —

Matched citations: H.R. 7148

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

Client expense: $250,000 · Firm income: —

Matched citations: H.R. 1

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

Client expense: $250,000 · Firm income: —

Matched citations: H.R. 1

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R. 1

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R. 1

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R. 3514

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R. 3514

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R.4709

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

Client expense: $50,000 · Firm income: —

Matched citations: H.R.4709

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

Client expense: $50,000 · Firm income: —

Matched citations: S.1816

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

Client expense: $50,000 · Firm income: —

Matched citations: S.1816

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 2528

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 2528

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 2571

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 2571

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 4758

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 4758

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 4758

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 7383

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 7383

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

Client expense: $60,000 · Firm income: —

Matched citations: H.R. 7383