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MDA Advocacy Statements and Communications to Policymakers
Action Alert

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.












  • 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  • Comments on FDA's Draft Guidance on Clinical Trial Eligibility (08.06.2019)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)



  • 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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