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MDA Advocacy Statements and Communications to Policymakers
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MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. Please see the resources below for a sampling of statements and communications to policymakers on a number of issues that affect the neuromuscular community. For any questions on these communications or other MDA public priorities, please refer to www.MDA.org/advocacy or email advocacy@mdausa.org.

 

2025

  • Coalition Comments on Confirmation of Frank Bisignano as Social Security Commissioner (6.6.2025)
  • Coalition Comments on House-Passed Big Beautiful Bill Act (6.6.2025)
  • Coalition Comments Expressing Concerns on One Big Beautiful Bill Act (6.5.2025)
  • 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 (5.23.2025)
  • Coalition Comments to Congressional Leadership on Support for NIH and Brain Health (5.23.2025)
  • Coalition Comments to House of Representatives Leadership on ACA Marketplace Concerns in Reconciliation (5.21.2025)
  • MDA Comments on One Big Beautiful Bill Act (5.20.25)
  • Coalition Comments to House and Senate Education Appropriations Leaders on Technical Assistance Centers (5.20.2025)
  • Coalition Comments to House Appropriations Leaders on Biomedical Research (5.14.2025)
  • Amicus Brief in Alliance of Health Care Sharing Ministries v. Colorado Division of Insurance in the 10th Circuit (5.14.2025)
  • Coalition Comments to House Agriculture Committee on SNAP Program Cuts (5.13.2025)
  • MDA Comments to House Energy and Commerce Committee on Budget Reconciliation Package (5.12.2025)
  • Coalition Comments on Cuts to Medicaid in Budget Reconciliation Package and ACA Marketplace Weakening (5.12.2025)
  • Coalition Comments to Social Security Administration on Security Authentication PIN Emergency Request (5.9.2025)
  • Coalition Comments to House and Senate Appropriations Leaders on NIAMS FY26 Appropriations (5.8.2025)
  • Coalition Comments to DOT re: Ensuring Lawful Regulation; Reducing Regulation and Controlling Regulatory Costs RFI (5.5.2025)
  • Coalition Comments to HHS Secretary Kennedy on Elimination of Advisory Committee on Heritable Disorders in Newborns and Children (5.5.2025)
  • Coalition Comments to Department of Housing and Urban Development on Fair Housing Revisions Interim Final Rule (5.2.2025)
  • Coalition Comments to Congressional Appropriators on FY26 Appropriations for Critical Housing Programs for Adults with Disabilities (4.30.2025)
  • Coalition Comments to House Energy and Commerce Committee Urging Against Medicaid Cuts (4.28.2025)
  • Coalition Comments to House and Senate Appropriators to Reject Proposed Cuts to HHS (4.25.2025)
  • Coalition Comments to Congressional Appropriations Leaders on Administration’s Draft Fiscal Year 2026 Budget for the Department of Health and Human Services (4.25.2025)
  • Coalition Comments on Introduction of IDEA Full Funding Act (4.24.2025)
  • Coalition Comments to Congressional Appropriations Leads on FY26 Education Appropriations (4.21.2025)
  • Coalition Comments in Support of Adding Duchenne Muscular Dystrophy (DMD) to Indiana's Newborn Screening Panel (4.18.2025)
  • Coalition Comments in Support of the HCBS Settings Rule (4.18.2025)
  • 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 (4.11.2025)
  • 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 (4.11.2025)
  • MDA Comments in Support of the IDEA Full Funding Act (4.11.2025)
  • Coalition Comments in Support of Mobility Means Freedom Tax Credit Act (4.10.25)
  • Coalition Comments in Support of the CONNECT for Health Act (4.3.2025)
  • Coalition Comments in Support of FY 2026 NIH Appropriations from Ad Hoc Group for Medical Research (4.7.2025)
  • Coalition Comments in Support of the Accelerating Kids' Access to Care Act (3.26.2025)
  • Coalition Comments in Response to Ongoing Developments at the Social Security Administration (SSA) (3.20.2025)
  • Coalition Comments Requesting Fiscal Year 2026 Appropriations for ALS Programs (3.18.2025)
  • Coalition Comments in Support of Preserving Patient Access to Home Infusion Act (3.13.2025)
  • MDA Comments in Response to NIH Strategic Plan Request for Comment (3.12.2025)
  • MDA Comments Opposing Funding Cuts in Recently Introduced Continuing Resolution (3.11.2025)
  • Coalition Comments in Support of the SSI Savings Penalty Elimination Act (3.10.2025)
  • Coalition Comments on U.S. Department of Health and Human Services Removal of Notice and Comment Opportunities (3.6.2025)
  • Coalition Comments on Legislative Efforts to Undermine the Regulatory Process and Weaken Public Health Protections (3.4.2025)
  • MDA Comments on U.S. House Adoption of Budget Resolution (2.26.2025)
  • Coalition Comments on Pharmacy Benefit Manager (PBM) Reform Patient Priorities (2.25.2025)
  • Coalition Comments to Secretary of Transportation Duffy on the Air Travel Experience for Disabled Veterans and Passengers with Disabilities (2.25.2025)
  • Coalition Comments to Congressional Leadership on Securing Access to Telehealth Services (2.24.2025)
  • Neuromuscular Advocacy Collaborative (NMAC) Comments on National Institutes of Health (NIH) Indirect Costs Cap (2.13.2025)
  • MDA Comments on Airline Passenger Rights Notice of Proposed Rulemaking (NPRM) (2.10.2025)
  • MDA Comments on Nondiscrimination on the Basis of Disability Air Travel Information Collection Advanced NPRM (2.10.2025)
  • Coalition Comments on U.S. Secretary of Education Nominee Linda McMahon (2.6.2025)
  • Coalition Comments on Wheelchair Repairs and Maintenance Policy Recommendations (2.5.2025)
  • Coalition Comments in Support of Pharmacy Benefit Manager (PBM) Reform (2.5.2025)
  • Coalition Comments on Trump Administration Defending No-Cost Preventive Care in Braidwood Case (1.30.2025)
  • Coalition Comments on Wheelchair Repair Solutions and Principles (1.29.2025)
  • Coalition Comments to President Trump on Rare Disease Community Priorities (1.24.2025)
  • Amicus Brief Filed in Kansas v. U.S. (1.24.2025)
  • Summary of Major Provisions in DOT Final Rule for Wheelchair Users (1.21.2025)
  • Amicus Brief 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 (1.9.2025)

2024

  • MDA Comments to Senate Health, Education, Labor, and Pensions (HELP) and Senate Finance Committee Leadership on End-of-Year Neuromuscular Community Priorities in Continuing Resolution (12.20.24)
  • Coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24)
  • MDA Comments to Speaker Johnson on End-of-Year Neuromuscular Community Priorities in Continuing Resolution (12.19.24)
  • Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24)
  • MDA Comments to House Committee on Energy and Commerce Leadership on Neuromuscular Community Priorities in End-of-Year Package (12.18.24)
  • Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24)
  • Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24)
  • Coalition Comments from NMAC Members to Congressional Leadership in Support of the Accelerating Kids' Access to Care Act in End-of-Year Package Negotiations (12.12.24)
  • Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24)
  • Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24)
  • 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:
  • Coalition Comments to Congressional Leadership on Rare Pediatric Disease Priority Review Voucher Program Reauthorization (12.4.24)
  • Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24)
  • Coalition Comments to President Biden Urging Finalization of Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule (11.26.2024)
  • Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations & Use of Assistive Technology in PreK-16 Schools (11.13.24)
  • Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24)
  • Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24)
  • Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24)
  • Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24)
  • Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24)
  • Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24)
  • MDA Comments to Federal Emergency Management Agency (FEMA) on Proposed Rule to Update FEMA Public Assistance Regulations (10.18.24)
  • Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24)
  • Amici Curiae Brief to U.S. District Court in Deferred Action for Childhood Arrivals Case, Kansas et al. v. U.S. (10.2.24)
  • MDA Testimony to FDA in Response to Diversity Action Plan Guidance (9.26.24)
  • MDA Comments in Advance of Senate Health, Education, Labor, and Pensions (HELP) Committee Markup of Health Bills (9.26.24)
  • MDA Testimony in front of FDA CBER Patient Listening Session (9.20.2024)
  • Coalition Comments in Support of the Think Differently Database Act (9.17.24)
  • Coalition Comments Asking House Leadership to Support Passage of Priority Review Voucher Reauthorization (9.16.24)
  • Coalition Comments Asking Senate Leadership to Support Passage of Priority Review Voucher Reauthorization (9.16.24)
  • Coalition Comments to the Department of Transportation Urging Finalization of the Wheelchair User Experience Rule (9.13.24)
  • Coalition Comments to the Contract Year 2025 Medicare Physician Fee Schedule Proposed Rule (9.9.24)
  • MDA Comments on FDA Platform Technology Designation Program for Drug Development Guidance for Industry (8.28.24)
  • MDA Comments to Consumer Financial Protection Bureau on Proposed Medical Debt Rule (8.12.24)
  • Coalition Comments to Consumer Financial Protection Bureau on Proposed Medical Debt Rule (8.12.24)
  • MDA Testimony to the Advisory Committee on Heritable Disorders in Newborns & Children on Duchenne Muscular Dystrophy Nomination (8.9.24)
  • Coalition Comments to Social Security Administration on Process to Authorize Information Collection for Claims (8.8.24)
  • Coalition Comments to U.S. Department of Transportation Re: Request For Information on Opportunities and Challenges of AI in Transportation (8.1.24)
  • MDA Comments to U.S. Senators Bob Casey (D-PA) and Eric Schmitt (R-MO) on the ENABLE Act (7.29.24)
  • MDA Comments to Election Assistance Commission Form Filler Tool (07.22.24)
  • Coalition Comments on the ALS Better Care Act from physicians who provide multidisciplinary care to people living with ALS (7.10.24)
  • Coalition Comments on Pending National Coverage Analysis for Standing Systems in Power Wheelchairs (6.28.24)
  • Coalition Comments on Supporting Non-Defense Discretionary Federal Funding in FY25 (6.25.24)
  • Coalition Comments on Rare Disease Pediatric Priority Review Voucher (PRV) Reauthorization (6.24.24)
  • Coalition Comments on DOT NPRM (6.12.24)
  • MDA Comments on DOT NPRM (6.12.24)
  • MDA Comments on House Energy and Commerce Committee Full Committee Markup on Health Bills (6.11.24)
  • Coalition Comments on 2026 Notice of Benefit and Payment Parameters (6.7.24)
  • Coalition Comments to DOJ on Accessible Voting (5.30.24)
  • Coalition Comments to CMS in Response to RFI on Medicare Advantage Data (5.29.24)
  • Coalition Comments on SNAP in House Farm Bill Reauthorization (5.23.24)
  • MDA Comments on House Energy and Commerce Committee Health Legislation Markup (5.16.24)
  • Coalition Comments on FY25 Education Appropriations (5.10.24)
  • MDA Comments to ACHDNC on DMD Nomination (5.9.24)
  • Senate Comments to Senate Appropriations Committee on Newborn Screening Appropriations (5.7.24)
  • Coalition Comments on FY25 Education Appropriations Asks (5.7.24)
  • Coalition Comments on 2024 FAA Reauthorization - PVA (5.6.24)
  • Coalition Comments on 2024 FAA Reauthorization - NMAC (5.3.24)
  • MDA Comments on Medicaid Access Hearing in House Energy and Commerce Committee (4.30.24)
  • Coalition Comments on MAXRX MPPP Model Documents (4.29.24)
  • Coalition Comments on DOT NPRM for Wheelchair Travel Comment Extension (4.26.24)
  • Coalition Comments on HHS Final Rule Section 1557 (4.26.24)
  • Coalition Comments on NCATS FY 25 Funding (4.17.24)
  • MDA Comments on House Energy & Commerce Telehealth Hearing (4.9.24)
  • Coalition Comments on DOJ Complaint Data Reports (3.28.24)
  • Coalition Comments on MAPRx Part D Redesign Guidance, Part 2 (3.15.24)
  • MDA Comments on ERISA RFI (3.15.24)
  • Coalition Comments on Restore Protections for Dialysis Patients Act (3.7.24)
  • Coalition Comments on ALS Community FY25 Funding Priorities (3.5.24)
  • Coalition Comments on MAPRx Part D Redesign Guidance (3.1.24)
  • Coalition Comments on BENEFIT Act (2.29.24)
  • MDA Statement to House Committee on Energy and Commerce on Rare Disease Day Hearing (2.29.24)
  • Coalition Comments on Final FAA Reauthorization Act Recommendations for Passengers with Disabilities (2.21.24)
  • Coalition Comments on Telehealth Policies (2.22.24)
  • Coalition Comments on Florida Children’s Health Insurance Program Eligibility Extension (2.21.24)
  • Coalition Comments on Proposed Rescission of Association Health Plan Final Rule (2.20.24)
  • Coalition Comments on Ensuring Medicaid Continuity for Children in Foster Care Act of 2023/S. 3196 (2.16.24)
  • MDA Comments on DOJ Proposed Rule on Accessible MDE (2.12.24)
  • Coalition Comments in Response to DOJ Proposed Rule on Accessible MDE (2.12.24)
  • Coalition Comments on Medicaid Unwinding IFR (2.2.24)
  • MDA Comments in Response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies (1.31.24)
  • Amicus Brief in U.S. Food and Drug Administration v. Alliance for Hippocratic Medicine (1.31.24)
  • MDA Comments to ACHDNC on DMD Nomination Updates (1.29.24)
  • Coalition Comments on FY24 Newborn Screening Appropriations (1.17.24)
  • Coalition Comments on Loper Supreme Court Oral Arguments (1.17.24)
  • Coalition Comments on HHS Notice of 2025 Benefit and Payment Parameters (1.9.24)
  • Coalition Comments on CMS Proposed Rule on Medicare Advantage and Medicare Part D (1.5.24)

2023

2022

 

2021

 

 

2020

 

 

2019

 

  • Coalition Statement on Texas vs. US Appellate Court Ruling (12.19.19)
  • Letter to HHS Secretary Alex Azar on extending the charter of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) (12.19.19)
  • Statement applauding Bipartisan, Bicameral Deal Protecting Patients and Consumers from Surprise Medical Bills (12.12.2019)
  • Letter to House and Senate urging the co-sponsorship of the Medical Expense Savings Act (12.4.2019).
  • Letter to House Leadership in support of the Access to Genetic Counselor Services Act of 2019 (11.20.2019).
  • Letter to House and Senate in support of PCORI (11.04.2019).
  • Comments on Access Board Advisory Guidelines for Onboard Wheelchairs (10.21.2019). 
  • Letter to ICER on Value Assessment Framework (10.18.2019)
  • Letter to Leadership on Suprise Medical Billing (10.2.2019).
  • Comments on Rare Pediatric Disease Priority Review Vouchers (9.30.2019).
  • Letter to ICER on Value Assessment Framework (09.06.2019) 
  • Comments on FDA's Draft Guidance on Clinical Trial Eligibility (08.06.2019)
  • Letter to the Honorable Seema Verma in support of Medicaid (07.18.2019)
  • Request for Comment on the consumer inflation measures produced by the federal statistical agencies (06.21.2019)
  • Letter to ICER on value assessment framework (06.10.2019)
  • Letter to Senator Susan Collins and Senator Maria Cantwell in Support of S.110 (06.06.2019)
  • Letter to Representative Marchant and Representative Porter in support of H.R. 2073 (06.06.2019)
  • Letter to Representative Kathy Castor in support of H.R. 1010 (05.15.2019).
  • Letter to Representative Lisa Blunt Rochester in support of H.R. 987 (05.15.2019)
  • Letter to Representative Pallone and Representative Walden on health coverage accessibility​ (05.08.2019).
  • Letter to Representative Kuster in support of  H.R. 986 (05.06.2019)
  • Statement for the record in support of H.R. 1010​ (04.08.2019).
  • Letter on Patient Protection and Affordable Care Act (02.19.2019)

 

2018

  • Letter to Secretary Azar on section 1332 (12.18.2018). 
  • Comments on states applying for waivers under Section 1332 of the Affordable Care Act (12.18.2018).
  • Comments on the recent Ruling in Texas v. US (12.17.2018).
  • Comments on the DHS notice of proposed rulemaking on inadmissibility on public grounds charges (12.10.2018).
  • Comment titled, "CMS Guidance Puts Millions of Americans with Pre-Existing Conditions at Risk" (10.24.2018)
  • Letter to Senator Thom Tillis urging Senate to reconsider approach to S.3388 (09.19.2018)
  • Letter to Representative Kevin Brady asking that the medical expense deduction be made permanent (09.13.2018)
  • Statement regarding S.3388, the Ensuring Coverage for Patients with Pre-Existing Conditions Act (09.04.2018)
  • Letter to Chair of Florida Genetics and Newborn Screening Advisory Council (08.23.2018)
  • Statement on rule released by the U.S. Department of labor that would expand the use of association health plans (06.19.2018)
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