Public Policy Priorities
Public Policy Priorities

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 the disease.
  • 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 the disease 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. NIH estimates its funding for FY 23 will be $131 million for clinical research and $75 million for expanded access for people with ALS who are not eligible for trials. 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-the only research program dedicated solely to ALS. 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 the disease. 
  • 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. The Registry collects and shares data on ALS with researchers, connects people living with the disease to clinical trials, and the Biorepository collects biospecimens and makes them available to researchers.

Optimize Current Treatments and Care

The federal government must ensure coverage of current and new ALS treatments, medical care and medical equipment required by people living with ALS.
  • Access To Timely, Quality Care: Congress must pass the ALS Better Care Act (H.R.5663/S.3258) to increase Medicare reimbursement for ALS multidisciplinary clinics. Multidisciplinary care is proven to improve the quality of life and reduce unnecessary costs such as visits to the hospital or emergency room. Access needs to be enhanced to these life-extending treatment centers.
  • Insurance Coverage for Current and New ALS Drugs, Medical Care and Medical Equipment: Congress and the Administration must ensure Medicare Advantage, Medicare Fee for Service, the Veterans Administration, and private health insurance provides timely and comprehensive coverage for current and new ALS drugs, medical care, and medical equipment (non-invasive ventilators, wheelchairs etc.).
      Policy makers must curb inappropriate prior authorization and other utilization techniques that delay, substitute, or deny medically necessary care. Congress and the Administration must ensure all co-pays count for all medical care, drugs, and coverage of drugs.  
  • Drug Approval: Congress and the Administration must pass and implement changes to the Food and Drug Administration that improve the review and approval of drugs and biological interventions that meet the unmet needs of rare diseases like ALS.
Congress must support and fund programs that adequately address the unique care needs of people living with ALS.
  • Telehealth: Congress and the Administration must ensure coverage of telehealth services through Medicare is extended and made permanent, provide temporary licensing reciprocity for all health practitioners, and continue-- 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 and the Administration 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 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 an affordable Medigap plan. 
  • Durable Medical Equipment: Congress and the Administration must ensure people living with ALS 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 cosponsor and pass the Justice for ALS Veterans Act (H.R.3790/S.1590) to include 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.
  • 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.  

View Our State Public Policy Priorities

Advocacy Guiding Principles
As legislative, regulatory, and other policy proposals are considered, they must be measured against the mission and values of The ALS Association.
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Public Policy Priorities