Federal Public Policy Priorities
Find New Treatments and Cures
Federal funding for ALS research must be expanded exponentially to provide new treatment options to cure and prevent ALS. Federal research dollars need to be focused on discoveries that will improve the lives of people living with ALS today, while we search for ways to end ALS.
- ACT for ALS Act: ALS Research and Expanded Access Funding – Department of Health and Human Services (HHS, NIH, & FDA): Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79) to help every American living with ALS. The law creates programs which fund expanded access to experimental therapies for ALS and research to speed development of new treatments and cures for ALS through the FDA and a public-private partnership led by HHS.
- ALS Research Funding – National Institutes of Health (NIH): Congress must increase funding to support an expansion of ALS research at NIH. In 2023, NIH estimates it will spend only $120 million on ALS research. Funding for ALS research at NIH must be increased to accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
- ALS Research Program (ALSRP) – Department of Defense (DOD): Congress must increase funding to $80 million for the ALSRP. With 3,500 veterans currently living with ALS, funding for the ALSRP must be increased to support innovative and impactful research targeting the development of new treatments for ALS.
- National ALS Registry and Biorepository – Centers for Disease Control and Prevention (CDC): Congress must provide at least $15 million to the National ALS Registry and Biorepository to continue the critical work of identifying risk factors for ALS and research on prevention strategies, with an emphasis on ALS prevention in the military. The Registry collects and shares data on ALS with researchers, connects people living with ALS to clinical trials, and the Biorepository collects biospecimens and makes them available to researchers.
Congress must act to create more opportunities for people living with ALS to access new and emerging ALS treatments and support the search for cures.
- Pathways for Drug Approval: Congress must support and pass reforms to the FDA's Accelerated Approval pathway for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Optimize Current Treatments and Care
The federal government must ensure coverage of new ALS treatments.
- Insurance Coverage for Drugs – Including New Drugs to Treat ALS
Congress, the Medicare Program, the Veterans Administration and private health insurance must ensure coverage for new ALS drugs so that they may be accessed by people living with ALS; protect coverage of drugs from cuts and changes that reduce access or burden beneficiaries; reduce out-of-pocket costs for beneficiaries and eliminate gaps in coverage; and curb the use of burdensome prior authorization and other utilization techniques that harm access to medications.
- Ban Use of Quality-Adjusted Life Years (QALY) and Equal Value Life Year Gained (evLYG) in Drug Coverage Determinations: QALY and similar cost-effectiveness metrics are discriminatory towards those with disability and rare disease like ALS. CMS should ban the use of discriminatory QALY and evLYG metrics when determining coverage of existing and new ALS therapies.
Congress must support and fund programs that adequately address the unique care needs of people living with ALS.
- Telehealth: Congress must ensure coverage of telehealth services through Medicare is extended and made permanent, provide temporary licensing reciprocity for all health practitioners, and continued and permanent access to remote clinical trials.
- Home Health Services: For people living with ALS, private home health care becomes a necessity as the disease progresses. Congress must work to expand benefits in the Medicare and Medicaid program to include respite care, home modifications, and other long-term services and supports (LTSS) to enable people living with ALS the ability to live in their home.
- Medicare Supplemental Insurance (Medigap): Congress must pass federal legislation that allows Medicare enrollees under age 65 guaranteed coverage to affordable Media plan.
- Durable Medical Equipment: People living with ALS should have access to assistive technologies and life-extending devices.
Prevent or Delay the Harms Associated with ALS
Congress must act to improve the lives of people living with ALS and their loved ones by supporting policies that will positively impact their lives.
- Justice for ALS Veterans Act: Congress must support and pass the Justice for ALS Veterans Act to increase Dependency and Indemnity Compensation (DIC) for surviving spouses and families of veterans who died of service-connected ALS, regardless of how long they lived with the disease.
- Disability Employment Incentive Act: Congress must cosponsor and pass the Disability Employment Incentive Act to support all people who desire to work, regardless of disability, by doubling the work opportunity tax credit, the disability expenditures tax credit and the transportation barriers tax credit.
- Genetic Testing & Counseling Protections: People living with ALS and their families should have access to genetic services regardless of a genetic indication of ALS. Congress must pass legislation to protect coverage of genetic testing.
Air Carrier Access Amendments Act: Congress must cosponsor and pass the Air Carrier Access Amendments Act to provide a means through which disabled individuals experiencing air travel discrimination can file complaints with the U.S. Department of Transportation and create new standards for aircraft to ensure accessibility for individuals with disabilities who use wheelchairs and complex mobility devices.
Credit for Caring Act: Congress must cosponsor and pass the Credit for Caring Act to support family caregivers that are essential to the care and well-being of people living with ALS by creating a new tax credit of up to $5,000 per year for family caregivers who spend, on average, $7,242 annually out-of-pocket.