ELLEN RIKER

Funding for federal sickle cell disease programs Funding and staffing for the CDC Division of Blood Disorders and Public Health Genomics Funding for and continuation of HRSAs Sickle Cell Disease Newborn Screening Follow Up Program FY27 House and Senate Labor-HHS Appropriations

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (S. 721/H.R. 5178) Medicaid eligibility and coverage for needed services for people living with sickle cell disease Implementation of Medicaid Community Engagement provisions of HR 1

Implementation of H.R. 1, One Big Beautiful Bill Act Policies related to Medicaid and ACA Marketplace plans

Potential legislation on hospital emergency department care of people with sickle cell disease Education and support for Congressional Sickle Cell Disease Caucus

Reimbursement for healthcare services provided by epilepsy centers

HR 1189/S 494 National Plan for Epilepsy Act

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Implementation of H.R. 1, One Big Beautiful Bill Act

Issues related to participation in the 340B Drug Discount Program Polices related to PBMs and drug cost transparency

Funding for federal hemophilia programs at CDC and HRSA for FY26 Funding for federal hemophilia programs at CDC and HRSA for FY27

Implementation of H.R. 1, One Big Beautiful Bill Act Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46.

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (S. 721/H.R. 5178) Medicaid eligibility and coverage for needed services for people living with sickle cell disease Implementation of H.R. 1, One Big Beautiful Bill Act Issues relating to medical listings of impairment for sickle cell disease for SSDI and SSI

HR 1189/S 494 National Plan for Epilepsy Act

Reimbursement for healthcare services provided by epilepsy centers

H.R. 1, One Big Beautiful Bill Act Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Preserving and expanding access to Medicaid Issues related to 1115 and 1332 of the Social Security Act; policies related to work requirements, reinsurance and block grants in Medicaid

Blood and plasma safety and awareness Bleeding disorders awareness

H.R. 1, One Big Beautiful Bill Act Implementation of the Affordable Care Act The HELP Copays Act (S. 864, H.R. 6423) Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Policies related to copay accumulator adjustor and maximizer programs Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46, HR 1834. Protect patients from substandard and junk insurance products

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid H.R. 1, One Big Beautiful Bill Act

H.R. 1, One Big Beautiful Bill Act Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including the HELP Copays Act (S 864, HR 6423) Private insurance policies that discriminate coverage for high-cost drugs and use of patient assistance programs, also known as Alternative Funding Programs Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46, HR 1834.

Funding for federal sickle cell disease programs FY26 House and Senate Labor-HHS Appropriations bills

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (S. 721/H.R. 5178) Medicaid eligibility and coverage for needed services for people living with sickle cell disease H.R. 1, One Big Beautiful Bill Act

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 1796/S. 735)

Reimbursement for healthcare services provided by epilepsy centers HR 1, One Big Beautiful Bill Act Letter to House and Senate Leaders requesting extension of expiring Telehealth services under Medicare

HR 1, One Big Beautiful Bill Act

HR 1189/S 494 National Plan for Epilepsy Act

H.R. 1, One Big Beautiful Bill Act Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Preserving and expanding access to Medicaid Issues related to 1115 and 1332 of the Social Security Act; policies related to work requirements, reinsurance and block grants in Medicaid

Blood and plasma safety and awareness Bleeding disorders awareness

H.R. 1, One Big Beautiful Bill Act Implementation of the Affordable Care Act The HELP Copays Act (S. 864) Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Policies related to copay accumulator adjustor and maximizer programs Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46. Protect patients from substandard and junk insurance products

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid H.R. 1, One Big Beautiful Bill Act

H.R. 1, One Big Beautiful Bill Act Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including the HELP Copays Act (HR 864) Private insurance policies that discriminate coverage for high-cost drugs and use of patient assistance programs, also known as Alternative Funding Programs Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46.

Funding for federal sickle cell disease programs FY25 and FY26 House and Senate Labor-HHS Appropriations bills

H.R. 1, One Big Beautiful Bill Act Policies related to the extension of enhanced advanced premium tax credits, including HR 247, HR 1, HR 5371, S 46.

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 1796/S. 735)

Reimbursement for healthcare services provided by epilepsy centers HR 1, One Big Beautiful Bill Act Letter to House and Senate Leaders requesting extension of expiring Telehealth services under Medicare Comments RE: Proposed Rule on Calendar Year 2026 Hospital Outpatient Prospective Payment System (OPPS) and Ambulatory Surgical Center Proposed Rule (CMS-1834-P) Comments RE: Proposed Rule on Medicare and Medicaid Programs; CY 2026 Payment Policies under the Physician Fee Schedule and Other Changes to Part B Payment and Coverage Policies; Medicare Shared Savings Program Requirements; and Medicare Prescription Drug Inflation Rebate Program (CMS-1832-P)

HR 1, One Big Beautiful Bill Act

H.R. 1, One Big Beautiful Bill Act Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Issues related to 1115 Waivers in Medicaid Preserving and expanding access to Medicaid

Blood and plasma safety and awareness Bleeding disorders awareness

H.R. 1, One Big Beautiful Bill Act Implementation of the Affordable Care Act The HELP Copays Act (S. 864) Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Policies related to copay accumulator adjustor and maximizer programs Policies related to the extension of enhanced advanced premium tax credits Protect patients from substandard and junk insurance products Patient Protection and Affordable Care Act; HHS Proposed Marketplace Integrity and Affordability Rule (CMS-9884-P)

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid H.R. 1, One Big Beautiful Bill Act

H.R. 1, One Big Beautiful Bill Act Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including The HELP Copays Act (HR 864) Private insurance policies that discriminate coverage for high-cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Patient Protection and Affordable Care Act; extension of the enhanced advance premium tax credits

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 1796/S. 735) Policies related to the social security disability programs, including National Academies of Science Education and Medicine Review of sickle cell disease criteria for social security disability programs.

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (S. 721) Accelerating Kids Access to Care Act (H.R. 1509/S. 752) Medicaid eligibility and coverage for needed services for people living with sickle cell disease H.R. 1, One Big Beautiful Bill Act

Reimbursement for healthcare services provided by epilepsy centers Telehealth services HR 1, One Big Beautiful Bill Act

HR 1, One Big Beautiful Bill Act

HR 1189/S 494 National Plan for Epilepsy Act

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Issues related to 1115 Waivers in Medicaid Preserving and expanding access to Medicaid

Blood and plasma safety and awareness Bleeding disorders awareness

Implementation of the Affordable Care Act The HELP Copays Act (HR 864) Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Policies related to copay accumulator adjustor and maximizer programs Policies related to PBM regulation Healthcare Affordability Act of 2024 (H.R. 9774 / S. 5194) Policies related to the extension of enhanced advanced premium tax credits Protect patients from substandard and junk insurance products House Ways and Means Committee Request for Information - Tax Priorities Patient Protection and Affordable Care Act; HHS Proposed Marketplace Integrity and Affordability Rule (CMS-9884-P)

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid PBM Reform amendments to Medicaid and Medicare in Continuing Resolution draft legislation

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including The HELP Copays Act (HR 864) Private insurance policies that discriminate coverage for high-cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Patient Protection and Affordable Care Act; extension of the enhanced advance premium tax credits

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 1796/S. 735) Policies related to the social security disability programs, including National Academies of Science Education and Medicine Review of sickle cell disease criteria for social security disability programs. Letter in response to HRSA RFI on Sickle Cell Disease Treatment Demonstration Program

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (S. 721) Accelerating Kids Access to Care Act (H.R. 1509/S. 752) Medicaid eligibility and coverage for needed services for people living with sickle cell disease

Reimbursement for healthcare services provided by epilepsy centers Telehealth services

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 7432/S. 5097) Accelerating Kids Access to Care Act (H.R. 4758/S. 2372)

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (H.R. 9872/S. 5226) Policies related to the social security disability programs

Funding for federal sickle cell disease programs FY25 House and Senate Labor-HHS Appropriations bills

Hemophilia research, prevention, surveillance and service programs and issues H.R. 3503/S. 1701 - NIH Clinical Trial Diversity Act Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 3884/S. 1852)

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Policies related to copay accumulator adjustor and maximizer programs Issues related to 1332 state innovation waivers Healthcare Affordability Act of 2024 (H.R. 9774 / S. 5194) Policies related to the extension of enhanced advanced premium tax credits Safe Step Act (HR 2630/ S. 652) Protect patients from substandard and junk insurance products House Ways and Means Committee Request for Information - Tax Priorities Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; and Basic Health Program (CMS-9888-P) Congressional sign-on letter to HHS/Treasury/Labor asking them to release the promised rule closing the EHB loophole for ERISA plans

Drug Enforcement Administration (DEA) rules to extend telehealth prescribing of controlled substances and other regulatory issues

Reimbursement for healthcare services provided by epilepsy centers Telehealth services

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Congressional sign-on letter to HHS/Treasury/Labor asking them to release promised rule closing the EHB loophole for ERISA plans Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; and Basic Health Program (CMS-9888-P)

Issues related to participation in the 340B Drug Discount Program HR 3290, 340B Transparency bill SUSTAIN 340B ACT - Draft Senate 340B reform legislation HR 8574 - 340B ACCESS Act Polices related to PBMs and drug cost transparency

Blood and plasma safety and awareness Bleeding disorders awareness Securing Equal Access to Research, Care, and Health (SEARCH) Act Creating Hope Reauthorization Act of 2024 (HR 7384) Prohibition on Creditors and Consumer Reporting Agencies Concerning Medical Information (Regulation V) (CFPB-2024- 0023)

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program

Hemophilia research, prevention, surveillance and service programs and issues H.R. 3503/S. 1701 - NIH Clinical Trial Diversity Act Letter in response to Congressional Framework on Reforming the National Institutes of Health Letter in response to FDA Draft Guidance on Diversity Action Plans

Issues related to participation in the 340B Drug Discount Program HR 3290, 340B Transparency bill SUSTAIN 340B ACT - Draft Senate 340B reform legislation HR 8574 - 340B ACCESS Act Polices related to PBMs and drug cost transparency

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Comment letter in response to CY 2025 Medicare Physician Fee Schedule proposed rule

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) AIMED Alliance Citizens Petition re drug importation and alternative payment models

Funding for federal sickle cell disease programs FY25 House and Senate Labor-HHS Appropriations bills

Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (H.R. 9872/S. 5226) Policies related to the social security disability programs; submitted nominees for NASEM sickle cell disease expert panel House and Senate Resolutions Expressing support for September as Sickle Cell Disease Awareness Month (H. Res. 1495/S. Res. 861)

Letter on Drug Enforcement Administration (DEA) rules to extend telehealth prescribing of controlled substances and other regulatory issues.

Reimbursement for healthcare services provided by epilepsy centers Telehealth services

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program SUSTAIN 340B ACT - Draft Senate 340B reform legislation

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap Issues related to 1115 Waivers in Medicaid Medicaid unwinding, the process for redetermination of Medicaid eligibility Preserving and expanding access to Medicaid Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) PROTECT Rare Act (H.R. 6094) MVP Act (H.R. 2666)

Issues related to participation in the 340B Drug Discount Program HR 3290, 340B Transparency bill SUSTAIN 340B ACT - Draft Senate 340B reform legislation HR 8574 - 340B ACCESS Act Polices related to PBMs and drug cost transparency

Funding for federal hemophilia programs

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Letter to the Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 7432) CMSs Office of Minority Health Sickle Cell Disease Action Plan

Funding for federal sickle cell disease programs FY25 House and Senate Labor-HHS Appropriations bills

Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (not yet introduced) Policies related to the social security disability programs, including letter to SSA seeking the review of the the disability criteria for sickle cell disease

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance Comments related to the Mental Health Parity and Addiction Equity Act Policies related to copay accumulator adjustor programs Letter to the Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states Issues related to access to residential substance use disorder and mental health facilities for individuals with bleeding disorders Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Menstrual Equity for All Act (H.R. 3646)

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Hemophilia Gene Therapy coverage and payment policy request for meeting with CMS HR 3561 Section related to Medicaid transparency and drug pricing Comments RE: Notice of Benefit and Payment Parameters for 2025 Proposed Rule (CMS-9895-P).

Funding for federal hemophilia programs

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Letter to the Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs

Epilepsy Program Grants

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) Sickle Cell Disease Comprehensive Care Act (H.R. 7432) CMSs Office of Minority Health Sickle Cell Disease Action Plan

Policies related to the orphan drug provision in the Inflation Reduction Act Comments Re: [FDA-2023-N-4718] Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement

Funding for federal sickle cell disease programs FY25 House and Senate Labor-HHS Appropriations bills

Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) CMSs Office of Minority Health Sickle Cell Disease Action Plan

Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (not yet introduced) H.Res. 692, Expressing support for the designation of September 2023 as Sickle Cell Disease Awareness Month S.Res., Expressing support for the designation of September 2023 as Sickle Cell Disease Awareness Month Congressional recognition of the Sickle Cell Disease Associations 50th Anniversary Comments in response to HHS/OCR Disability NPRM, RIN 0945-AA15

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Issues related to reimbursement for hemophilia services and treatments in Medicare Issuers related to reimbursement for hemophilia services and treatments in Medicaid HR 3561 Section related to Medicaid transparency and drug pricing Hemophilia Gene Therapy coverage and payment policy request for meeting with CMS

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance Comments related to the Mental Health Parity and Addiction Equity Act Policies related to copay accumulator adjustor programs

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states Issues related to access to residential substance use disorder and mental health facilities for individuals with bleeding disorders Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Menstrual Equity for All Act (H.R. 3646) Letter RE: House Budget Committees Health Care Task Force Request for Information on containing health care costs

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance Patient Priorities for the Notice of Benefit and Payment Parameters

Hemophilia research, prevention, surveillance and service programs and issues Comments in response to Senate RFI re CDC

Comments in response to the Medicare CY24 Physician Fee Schedule Proposed Rule Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) CMSs Office of Minority Health Sickle Cell Disease Action Plan

Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (not yet introduced) H.Res. 692, Expressing support for the designation of September 2023 as Sickle Cell Disease Awareness Month S.Res., Expressing support for the designation of September 2023 as Sickle Cell Disease Awareness Month

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Request for subspecialty designation of epilepsy specialists (epileptologists) under Medicare ICD-10-CM proposals for epilepsy-related diagnosis codes Medicare Part D, six protected classes of drugs

Issues related to reimbursement for hemophilia services and treatments in Medicare Issuers related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act HR 3561 Section related to Medicaid transparency and drug pricing Comments in response to Medicare Program; Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities; Updates to the Quality Reporting Program and Value-Based Purchasing Program for Federal Fiscal Year 2024

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Issues related to federal programs related to sickle cell disease, Medicare and Medicaid policies related to services needed by people living with sickle cell disease, and research and data collection on sickle cell disease.

Issues related to federal programs related to sickle cell disease, Medicare and Medicaid policies related to services needed by people living with sickle cell disease, and research and data collection on sickle cell disease.

Issues related to federal programs related to sickle cell disease, Medicare and Medicaid policies related to services needed by people living with sickle cell disease, and research and data collection on sickle cell disease.

Issues related to reimbursement for hemophilia services and treatments in Medicare Issuers related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act HR 3561 Section related to Medicaid transparency and drug pricing Comments in response to Medicare Program; Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities; Updates to the Quality Reporting Program and Value-Based Purchasing Program for Federal Fiscal Year 2024

Funding for federal hemophilia programs

Issues related to participation in the 340B Drug Discount Program HR 3290, 340B Transparency bill

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states Issues related to access to residential substance use disorder and mental health facilities for individuals with bleeding disorders

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Request for subspecialty designation of epilepsy specialists (epileptologists) under Medicare ICD-10-CM proposals for epilepsy-related diagnosis codes Medicare Part D, six protected classes of drugs

Epilepsy Program Grants

Funding for federal hemophilia programs

Issues related to reimbursement for hemophilia services and treatments in Medicare Issuers related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act

Issues related to participation in the 340B Drug Discount Program Comments on Proposed Changes to the 340B Administrative Dispute Resolution (Docket No. HRSA-2021-000X)

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states Issues related to access to residential substance use disorder and mental health facilities for individuals with bleeding disorders

Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance Comments in response to proposed 2024 Notice of Benefit and Payment Parameters Comments in response to Request for Information on Essential Health Benefits

Submitted comments on Drug Enforcement Administration Notice of Proposed Rulemaking on the use of telemedicine to prescribe controlled substances.

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Request for subspecialty designation of epilepsy specialists (epileptologists) under Medicare ICD-10-CM proposals for epilepsy-related diagnosis codes Medicare Part D, six protected classes of drugs

Epilepsy Program Grants

Reintroduction of Sickle Cell Disease Comprehensive Care Act Request for a Center for Medicare and Medicaid Innovation demonstration program for sickle cell disease, including the Sickle Cell Disease Comprehensive Care Act

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait Reintroduction of The Sickle Cell Care Expansion Act (H.R. 7177/S.4425) Healthcare issues related to hematologic diseases

Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

Abortion and reproductive health care access Maternal Mental Health Into the Light for Maternal Mental Health and Substance Use Disorders Act (S. 3824/H.R. 7073) TRIUMPH for New Moms Act of 2021 (H.R. 4217/S. 2779) Unwinding of the COVID-19 Public Health Emergency Initiatives related to inclusion of pregnant and lactating individuals in clinical research RFI on NIH-Wide Strategic Plan for Research on the Health of Women (Notice Number: NOT-OD-22-186) Advance Notice of Proposed Rulemaking: Trade Regulation Rule on Commercial Surveillance and Data Security (R111004)

Reproductive Health Services Interim Final Rule, RIN: 2900-AR57

Abortion and reproductive health care access Maternal Mental Health Into the Light for Maternal Mental Health and Substance Use Disorders Act (S. 3824/H.R. 7073) TRIUMPH for New Moms Act of 2021 (H.R. 4217/S. 2779) Unwinding of the COVID-19 Public Health Emergency Initiatives related to inclusion of pregnant and lactating individuals in clinical research RFI on NIH-Wide Strategic Plan for Research on the Health of Women (Notice Number: NOT-OD-22-186) Advance Notice of Proposed Rulemaking: Trade Regulation Rule on Commercial Surveillance and Data Security (R111004)

Issues related to mifepristone

FDA policies related to research and approvals of treatments for hematological diseases

H.R. 2617 - Consolidated Appropriations Act of 2023 - NIH and funding of CDC sickle cell data collection program FY 2023 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

S.3389/ H.R.6216 - Sickle Cell Disease Comprehensive Care Act H.R. 2617 - Consolidated Appropriations Act of 2023 - Medicare provisions to eliminate cuts in physician payment and Medicaid provisions related to inclusion of S.3389/HR 6216. Making permanent Medicare telehealth expansions allowed during Public Health Emergency Legislation to eliminate CMS planned reductions to Medicare Physician Fee Schedule Conversion Factor and other payment reductions in Medicare proposed for 2022 The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566) Need for expert panel to advise CMS on improving values for evaluation and management services National Coverage Determination on myelodysplastic syndromes (MDS) Request for a Center for Medicare and Medicaid Innovation demonstration program for sickle cell disease

Hemophilia research, prevention, surveillance and service programs and issues

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap Issues related to 1115 Waivers in Medicaid Comments regarding the temporary increase in federal medical assistance percentage (FMAP) in response to the COVID-19 Public Health Emergency (PHE) (CMS-9912-N) Comments in response to the Medicaid Eligibility and Enrollment NPRM (CMS-2421-P) Comments in response to the RFI regarding National Directory of Healthcare Providers & Services (CMS-0058-NC) Comments in response to the RFI regarding accessing healthcare and related challenges, understanding provider experiences, advancing health equity, and assessing the impact of waivers and flexibilities provided in response to the COVID-19 Public Health Emergency (PHE)

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model The HELP Copays Act (HR 5801) The Protect 340B Act (HR 4390) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Issues related to participation in the 340B Drug Discount Program

Funding for federal hemophilia programs

FY 2023 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

FDA policies related to research and approvals of treatments for hematological diseases

S.3389/ H.R.6216 - Sickle Cell Disease Comprehensive Care Act Making permanent Medicare telehealth expansions allowed during Public Health Emergency Legislation to eliminate CMS planned reductions to Medicare Physician Fee Schedule Conversion Factor and other payment reductions in Medicare proposed for 2022 The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566) Need for expert panel to advise CMS on improving values for evaluation and management services Medicare Program; Hospital Inpatient Prospective Payment Systems for Acute Care Hospitals and the Long-Term Care Hospital Prospective Payment System and Proposed Policy Changes and Fiscal Year 2023 Rates Comments in response to CY2023 Medicare Physician Fee Schedule (CMS-1770-P) National Coverage Determination on myelodysplastic syndromes (MDS) Issues related to Medicare coverage of childhood vaccines for patients post-stem cell transplant

Issues related to mifepristone

Permanent and mandatory extension of Medicaid for benefits for 12-months post-partum Graduate medical education

Reproductive Health Services Interim Final Rule, RIN: 2900-AR57

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap Issues related to 1115 Waivers in Medicaid Request for Information: Access to Coverage and Care in Medicaid and CHIP

Funding for federal hemophilia programs in FY 22 Labor, HHS, and Education Appropriations Policies related to paid family and medical leave

H.R. 5376 - Inflation Reduction Act of 2022; a budget reconciliation bill which included provisions to continue subsidies on private insurance premiums, address out of pocket costs in Medicare Part D, and more Comments on future rulemaking for the 2024 Notice on Benefit and Payment Parameters Implementation of the Affordable Care Act The HELP Copays Act (HR 5801) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2163 / S 464) Policies to make Advance Premium Tax Credits Permanent Implementation of the No Surprises Act Addition in any reconciliation package of policies related to health insurance coverage and affordability, including permanent extension of Advanced Premium Tax Credits provided by the American Rescue Plan, closing the Medicaid coverage gap, and a cap on out-of-pocket costs for Medicare Part D beneficiaries Policies related to short-term, limited duration insurance

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Issues related to participation in the 340B Drug Discount Program

Funding for federal hemophilia programs

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Comments on future rulemaking for the 2024 Notice on Benefit and Payment Parameters The HELP Copays Act (HR 5801) The Protect 340B Act (HR 4390) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Abortion and reproductive health care access Maternal Mental Health Into the Light for Maternal Mental Health and Substance Use Disorders Act (S. 3824/H.R. 7073) TRIUMPH for New Moms Act of 2021 (H.R. 4217/S. 2779) Unwinding of the COVID-19 Public Health Emergency Initiatives related to inclusion of pregnant and lactating individuals in clinical research

Permanent and mandatory extension of Medicaid for benefits for 12-months post-partum

Abortion and reproductive health care access Maternal Mental Health Into the Light for Maternal Mental Health and Substance Use Disorders Act (S. 3824/H.R. 7073) TRIUMPH for New Moms Act of 2021 (H.R. 4217/S. 2779) Unwinding of the COVID-19 Public Health Emergency Initiatives related to inclusion of pregnant and lactating individuals in clinical research Permanent and mandatory extension of Medicaid for benefits for 12-months post-partum

Abortion and reproductive health care access Maternal Mental Health Into the Light for Maternal Mental Health and Substance Use Disorders Act (S. 3824/H.R. 7073) TRIUMPH for New Moms Act of 2021 (H.R. 4217/S. 2779) Unwinding of the COVID-19 Public Health Emergency Initiatives related to inclusion of pregnant and lactating individuals in clinical research Permanent and mandatory extension of Medicaid for benefits for 12-months post-partum

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait Issues related to Sickle Cell Disease Treatment Centers 2021 Sickle Cell Disease Awareness Month Resolution The Sickle Cell Care Expansion Act (H.R. 7177/S.4425) Healthcare issues related to hematologic diseases CURES 2.0 draft legislation (H.R. 6000) Implementation of No Surprises Act Affordability of Employer Coverage for Family Members of Employees (REG-114339-21)

S.3389/ H.R.6216 - Sickle Cell Disease Comprehensive Care Act Making permanent Medicare telehealth expansions allowed during Public Health Emergency Legislation to eliminate CMS planned reductions to Medicare Physician Fee Schedule Conversion Factor and other payment reductions in Medicare proposed for 2022 The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566) Need for expert panel to advise CMS on improving values for evaluation and management services National Coverage Determination on myelodysplastic syndromes (MDS) Issues related to Medicare coverage of childhood vaccines for patients post-stem cell transplant

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act CMS-1765-P; Medicare Program; Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model The HELP Copays Act (HR 5801) The Protect 340B Act (HR 4390) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap Issues related to 1115 Waivers in Medicaid CMS-1765-P; Medicare Program; Prospective Payment System and Consolidated Billing for Skilled Nursing Facilities Request for Information: Access to Coverage and Care in Medicaid and CHIP

Implementation of the Affordable Care Act The HELP Copays Act (HR 5801) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2163 / S 464) Policies to make Advance Premium Tax Credits Permanent Implementation of the No Surprises Act Addition in any reconciliation package of policies related to health insurance coverage and affordability, including permanent extension of Advanced Premium Tax Credits provided by the American Rescue Plan, closing the Medicaid coverage gap, and a cap on out-of-pocket costs for Medicare Part D beneficiaries Policies related to short-term, limited duration insurance DHS Docket No. USCIS-2021-0013; Public Charge Ground of Inadmissibility Affordability of Employer Coverage for Family Members of Employees

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

FDA policies related to research and approvals of treatments for hematological diseases

FY 2022 and FY 2023 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

S.3389/ H.R.6216 - Sickle Cell Disease Comprehensive Care Act Making permanent Medicare telehealth expansions allowed during Public Health Emergency Legislation to eliminate CMS planned reductions to Medicare Physician Fee Schedule Conversion Factor and other payment reductions in Medicare proposed for 2022 The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566) Need for expert panel to advise CMS on improving values for evaluation and management services National Coverage Determination on myelodysplastic syndromes (MDS) The Sickle Cell Care Expansion Act (H.R. 7177)

Funding for federal hemophilia programs

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model The HELP Copays Act (HR 5801) The Protect 340B Act (HR 4390) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model)

Issues related to participation in the 340B Drug Discount Program

Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states

Hemophilia research, prevention, surveillance and service programs and issues

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program Protect 340B Act (HR 4390)

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Epilepsy Program Grants

FDA policies related to research and approvals of treatments for hematological diseases

FY 2022 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait 2021 Sickle Cell Disease Awareness Month Resolution Healthcare issues related to hematologic diseases CURES 2.0 draft legislation (H.R. 6000) Responding to Social Determinants of Health Caucus Request for Information Implementation of No Surprises Act

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program Protect 340B Act (HR 4390)

Funding for federal hemophilia programs in FY 22 Labor, HHS, and Education Appropriations Build Back Better Act (HR 5376) Policies related to paid family and medical leave

Implementation of the Affordable Care Act The HELP Copays Act (HR 5801) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2163 / S 464) Policies to make Advance Premium Tax Credits Permanent Implementation of the No Surprises Act

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Funding for federal hemophilia programs

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model The HELP Copays Act (HR 5801) The Protect 340B Act (HR 4390)

FDA policies related to research and approvals of treatments for hematological diseases

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait 2021 Sickle Cell Disease Awareness Month Resolution Healthcare issues related to hematologic diseases CURES 2.0 draft legislation Responding to Social Determinants of Health Caucus Request for Information

FY 2022 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding

Issues related to participation in the 340B Drug Discount Program

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act HR 3, Elijah E. Cummings Lower Drug Costs Now Act

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Accumulator adjustor issues Protect 340B Act (HR 4390) HHS Request for Information Regarding Reporting on Pharmacy Benefits and Prescription Drug Costs

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program Protect 340B Act (HR 4390)

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap

Implementation of the Affordable Care Act Congressional efforts to address co-pay accumulator adjustor issues Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2163 / S 464) HHS Request for Information Regarding Reporting on Pharmacy Benefits and Prescription Drug Costs Updating Payment Parameters, Section 1332 Waiver Implementing Regulations, and Improving Health Insurance Markets for 2022 and Beyond Proposed Rule Policies to make Advance Premium Tax Credits Permanent

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Epilepsy Program Grants

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait Healthcare issues related to hematologic diseases CURES 2.0 draft legislation

Sickle Cell Disease Medicaid Demonstration Program draft legislation Making permanent Medicare telehealth expansions allowed during Public Health Emergency Coverage of blood transfusions for palliative care in hospice Need for expert panel to advise CMS on improving values for evaluation and management services National Coverage Determination on myelodysplastic syndromes (MDS)

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program

Funding for federal hemophilia programs in FY 22 Labor, HHS, and Education Appropriations

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services

Epilepsy Program Grants

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs HR 3173, Improving Seniors Timely Access to Care Act

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Accumulator adjustor issues NCATS RFI on Facilitating the Early Diagnosis and Equitable Delivery of Gene-Targeted Therapies to Individuals with Rare Diseases

Issues related to participation in the 340B Drug Discount Program

Funding for federal hemophilia programs

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Medicare Part D, six protected classes of drugs

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program

Implementation of the Affordable Care Act Accumulator adjustor issues Policies related to insurance coverage and COVID-19 Junk Plan Accountability and Disclosure Act (S. 1002) No Junk Plans Act

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Medicare coverage policy for the six protected classes of drug treatments Policies related to work requirements in Medicaid Policies related to Medicaid block grants Policies related to funding for Medicaid expansion

Funding for federal hemophilia programs

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans Accumulator adjustor issues

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid

Sickle Cell Disease Medicaid Demonstration Program draft legislation Making permanent Medicare telehealth expansions allowed during Public Health Emergency Coverage of blood transfusions for palliative care in hospice and home health benefit Need for expert panel to advise CMS on improving values for evaluation and management services National Coverage Determination on myelodysplastic syndromes (MDS)

Health disparities as they relate to sickle cell disease Issues related to sickle cell disease and sickle cell trait Healthcare issues related to hematologic diseases Submission of ICD-10-CM coding proposal on von Willebrand Disease and presentation at Panel Meeting

Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Coverage for telemedicine in Medicare Hemophilia SNF Access Act (S. 3233 / H.R. 5952) HR 133, Consolidated Omnibus Appropriations Act

Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans

Issues related to participation in the 340B Drug Discount Program Congressional RFI regarding the 340B Program

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Comment letter on Medicare Physician Fee Schedule Proposed Rule for CY 2021 HR 133 Consolidated Omnibus Appropriations Act

Funding for federal hemophilia programs in FY 21 Labor, HHS, and Education Appropriations HR 133, Consolidated Omnibus Appropriations Act

Implementation of the Affordable Care Act Surprise medical billing Accumulator adjustor issues H.R. 7647, the Preserving Patient Savings on Drug Costs Act Coverage for Telehealth Services Policies related to COVID and immunocompromised populations Proposed waivers under Sections 1115 and 1332 of the Social Security Act Proposed rule related to Securing Updated and Necessary Statutory Evaluations Timely Proposed rule on Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency Proposed rules on Notice of Benefit and Payment Parameters Interim final rule on Most Favored Nation policy Proposed rule related to prior authorization policies in Medicaid and private plans

Comment Letter on FDA Draft Guidance on the Development of Drugs and Biologicals for AML

FY 2021 House and Senate Labor HHS Appropriations bills Funding for CDC Sickle Cell Disease Data Collection Program and HRSA Sickle Cell Disease Regional Demonstration Program Funding for Hematology research and NIH total funding HR 133, Consolidated Omnibus Appropriations Act

Sickle Cell Disease Medicaid Demonstration Program draft legislation Comment Letter on Medicare Physician Fee Schedule Proposed Rule for CY 2021 Comment Letter of Most Favored Nation Drug Reimbursement Policy Interim Final Rule Making permanent Medicare telehealth expansions allowed during Public Health Emergency Coverage of blood transfusions for palliative care in hospice and home health benefit Letter to Congress on Medicare policies related to evaluation and management services and the conversion factor for CY 2021 Outreach to President-elect Bidens transition team on evaluation and management services policies HR 133, Consolidated Omnibus Appropriations Act National Coverage Determination on myelodysplastic syndromes (MDS)

Hemophilia research, prevention, surveillance and service programs and issues

Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program

Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Hemophilia SNF Access Act (S. 3233 / H.R. 5952) Medicaid Value-Based Pricing Proposed Rule Coverage for Telehealth Services

Letter to Agency for Healthcare Research and Quality (AHRQ)/Evidence-based Practice Center (EPC) Program on their systematic review on Management Strategies for Infantile Epilepsy.

Reimbursement for healthcare services provided by epilepsy centers Telehealth services Comment letter on Medicare Physician Fee Schedule Proposed Rule for CY 2021