CURE SMA

Health Issues

Research into spinal muscular atrophy, timely access to care, treatments, medical devices, and home and community-based services, newborn screening, 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), Medicaid unwinding protections for people with SMA and other disabilities, direct care workforce shortage, healthcare discrimination (i.e., quality adjusted life years), 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)

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.

SENATE · HOUSE OF REPRESENTATIVES · Education, Dept of · Health & Human Services, Dept of (HHS) · Housing & Urban Development, Dept of (HUD) · Labor, Dept of (DOL) · Transportation, Dept of (DOT) · Federal Emergency Management Agency (FEMA) · Social Security Administration (SSA) · Centers For Disease Control & Prevention (CDC) · Natl Institutes of Health (NIH)