CURE SMA

Health Issues

Research into spinal muscular atrophy, timely access to care, treatments, medical devices, and home and community-based services, newborn screening, newborn screening funding, coverage of rare disease treatments and care, HCBS Access Act (H.R. 1493, S. 762), BENEFIT Act (H.R. 1092, S. 526), Safe Step Act (S. 652, H.R. 2630), Protecting Health Care for All Patients Act of 2023 (H.R. 485), Supporting Our Direct Care Workforce & Family Caregivers Act (S. 1298), Long-Term Care Workforce Support Act (S.4120/H.R.7994); HCBS Relief Act (S. 3118, H.R. 6296); Recognizing the Role of Direct Support Professionals Act (S. 1332), Medicaid unwinding protections for people with SMA and other disabilities, direct care workforce shortage, healthcare discrimination (i.e., quality adjusted life years), Ensuring Patient Access to Critical Breakthrough Products Act (H.R. 1691); Creating Hope Reauthorization Act (H.R.7384/ S. 4583), healthcare utilization protocols (i.e., prior authorization and step therapy), Patient Protection and Affordable Care Act (111-148), Inflation Reduction Act (P.L. 117-169), Supporting accessible medical diagnostic equipment, Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 2706/S. 1183), Lifespan Respite Reauthorization Act (H.R. 6160), Stop Unfair Medicaid Recoveries Act (H.R. 7573), accessible medical diagnostic equipment, durable medical equipment, intermittent catheter coding, FDA Rare Disease Center of Excellence, Think Differently Database Act (H.R.670), Accelerating Kids Access to Care Act ((H.R.4758/S.2372)

TargetedSENATE · HOUSE OF REPRESENTATIVES · Health & Human Services, Dept of (HHS) · Centers For Disease Control & Prevention (CDC) · Food & Drug Administration (FDA) · Centers For Medicare and Medicaid Services (CMS) · Natl Institutes of Health (NIH)

Budget/Appropriations

National Institutes of Health research into spinal muscular atrophy, newborn screening funding, Social Security Administration funding, federal disability program funding, including education (IDEA programs), emergency preparedness (FEMA), employment (vocational rehabilitation program), housing (Sec. 811 Housing for People with Disabilities & Mainstream Housing Choice Vouchers), technology (assistive technology state grants), and transportation (accessible airport pilot program), Further Consolidated Appropriations Act of 2024 (H.R.2882), fiscal year 2025 Labor-HHS-Education Appropriations bills, FY 2025 Transportation-HUD Appropriations bills