THE ALS ASSOCIATION

BUD · Budget/Appropriations

H.R.1968 -Full-Year Continuing Appropriations and Extensions Act, 2025 Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $150 million for ALS research at NIH in fiscal year 2024 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials. Requested at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79). Requested at least $15 million to continue CDCs National ALS Registry and Biorepository in fiscal year 2024 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and biospecimens, and support research of ALS prevention in the military. Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2024 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials. Conversations surrounding Appropriations for Fiscal Year 2026 (No Bill Number) Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $180 million for ALS research at NIH in fiscal year 2024 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials. Requested at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79). Requested at least $15 million to continue CDCs National ALS Registry and Biorepository in fiscal year 2024 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and biospecimens, and support research of ALS prevention in the military. Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2024 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials

Literal federal measure citations: H.R.1968

HCR · Health Issues

Discussions around improving access, coverage, and prior authorization for treatments and drugs under Medicare, Medicare Advantage, and private insurance. HEALTHY BRAINS Act (Draft legislation) - All Provisions

MMM · Medicare/Medicaid

ALS Better Care Act (Draft legislation) - Discussion around re introduction and provisions related to supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS. HELP Copays Act (S.864) -- Provisions related to health insurance plans requirement to apply payments made by or on behalf of plan enrollees toward a plan's cost-sharing requirements, i.e. a ban on copay-accumulator adjust programs. CONNECT for Health Act (S.1261) - provisions related to permanent telehealth services in Medicare and interstate telehealth services. Alleviating Barriers for Caregivers (ABC) Act (H.R.2491) - All provisions. Lifespan Respite Care Reauthorization Act (H.R. 2560/S.830) - all provisions

Literal federal measure citations: S.864, S.1261, H.R.2491, H.R. 2560, S.830

VET · Veterans

Justice for ALS Veterans Act (H.R 1685 / S. 749) -- All Provisions, including those extending Dependency and Indemnity Compensation payments to surviving spouses of veterans who die from ALS, regardless of how long a veteran had ALS prior to death.

Literal federal measure citations: H.R 1685, S. 749

TAX · Taxation/Internal Revenue Code

Credit for Caring Act of 2025 (H.R.2036/S. 925) - All provisions. Clinical Trial Tax Credit (Draft legislation) - All provisions. Mobility Means Freedom Tax Credit Act (H.R. 2320) - All provisions

Literal federal measure citations: H.R.2036, S. 925, H.R. 2320