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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.

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  • Comments on FDA's Draft Guidance on Clinical Trial Eligibility (08.06.2019)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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      Muscular Dystrophy Association National Office
      161 N. Clark, Suite 3550
      Chicago, Illinois 60601
      800-572-1717 | ResourceCenter@mdausa.org