THE ALS ASSOCIATION

BUD · Budget/Appropriations

H.R 4016 / S.2572 - Department of Defense Appropriations Act Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2026 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. H.R. 4121 / S.2256 - Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2026 Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $25 million authorized in the ACT for ALS Act (P.L. 1179-79) for research to speed the regulatory process for new ALS and rare disease therapies in fiscal year 2026. H.R. 5304 / S.2587 - Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2026 Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $180 million for ALS research at NIH in fiscal year 2026 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 2026 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. H.R. 1 - One Big Beautiful Bill Act Discussions around the implementation of the bill to ensure the medically frail, SSDI beneficiaries and/or those with terminal illnesses do not need to recertify for Medicaid coverage.

Literal federal measure citations: H.R 4016, S.2572, H.R. 4121, S.2256, H.R. 5304, S.2587, H.R. 1

HCR · Health Issues

H.R. 8205 - To amend the Accelerating Access to Critical Therapies for ALS Act to reauthorize the provisions of such Act through fiscal year 2031, and for other purposes. All provisions. H.R. 7779 - HEALTHY BRAINS Act - All Provisions H.R. 3864 - Protecting Health Care for All Patients Act of 2025 All provisions related to the banning of use of the quality-adjusted Life year valuation metric in coverage and payment determinations under federal health care programs. General Discussions/Draft Language - Discussions around improving access, coverage, and prior authorization for treatments and drugs under Medicare, Medicare Advantage, and private insurance.

Literal federal measure citations: H.R. 8205, H.R. 7779, H.R. 3864

MMM · Medicare/Medicaid

H.R. 7336/S.3763 - ALS Better Care Act - All provisions. H.R. 6423/S. 864 - HELP Copays Act -- 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. H.R. 4206 / S. 1261 - CONNECT for Health Act - Provisions related to permanent telehealth services in Medicare and interstate telehealth services. H.R. 2491 / S. 1227 - Alleviating Barriers for Caregivers (ABC) Act - All provisions. H.R. 2560 / S.830 - Lifespan Respite Care Reauthorization Act - All provisions H.R. 3514 / S. 1816 - Improving Seniors Timely Access to Care Act of 2025 All provisions relating to prior authorization usage under Medicare Advantage Plans. H.R. 6280/S. 3607- Genetic Counselor Services Act - All provisions

Literal federal measure citations: H.R. 7336, S.3763, H.R. 6423, S. 864, H.R. 4206, S. 1261, H.R. 2491, S. 1227, H.R. 2560, S.830, H.R. 3514, S. 1816, H.R. 6280, S. 3607

VET · Veterans

H.R 1685 / S. 749 - Justice for ALS Veterans Act -- 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 . H.R. 6001 - Veterans with ALS Reporting Act - All provisions, including ALS prevention for the military and access to care for veterans living with ALS.

Literal federal measure citations: H.R 1685, S. 749, H.R. 6001

TAX · Taxation/Internal Revenue Code

H.R.2036/S. 925 - Credit for Caring Act of 2025 - All provisions. H.R. 138/S.1565 - Lowering Costs for Caregivers Act - All provisions Clinical Trial Tax Credit (Draft legislation) - All provisions. H.R. 2320 - Mobility Means Freedom Tax Credit Act - All provisions

Literal federal measure citations: H.R.2036, S. 925, H.R. 138, S.1565, H.R. 2320

PHA · Pharmacy

H.R.1672 - Maintaining Investment in New Innovation Act - All Provisions H.R.1492 - To amend title XI of the Social Security Act to equalize the negotiation period between small-molecule and biologic candidates under the Drug Price Negotiation Program - Discussion around encouraging innovation and research transparency for rare disease drugs.

Literal federal measure citations: H.R.1672, H.R.1492

WEL · Welfare

Social Security Caregiver Credit Act (Draft Legislation) - All Provisions