MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. Please see the below resources 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 email@example.com.
- Coaltion statement on Texas vs. US Appelate 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- Comments on FDA's draft guidance on clinical trial eligibility (08.06.2019)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 staistical 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 accesibility (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).
- Comment titled, "38 Patient Groups Against Recent Ruling in Texas v. US" (12.17.2018).
- Comment on the DHS notice of proposed rulemaking on inadmissabillity 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).