ALS Advocacy: Public Policy Priorities

• ACT for ALS Act: ALS Research and Expanded Access Funding Department of Health and Human Services (HHS)
  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 new law creates programs that will fund expanded access to experimental therapies for ALS and fund research to find treatments and cures for ALS and similar diseases directly through the FDA and through a public-private partnership lead by HHS. 
• ALS Research Funding National Institutes of Health (NIH)
  Congress must increase funding to support an expansion of ALS research at NIH. In 2022, NIH estimates it will spend only $115 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 at least $60 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 $10 million to the National ALS Registry and Biorepository to continue the critical work of identifying risk factors for ALS and how to prevent it. The Registry collects and shares data on ALS with researchers and helps connect people living with ALS to clinical trials. The Biorepository collects biospecimens and makes them available to researchers. 
• Orphan Products Grants Program (OPGP) Food and Drug Administration (FDA)
   Congress must provide at least $25 million for ALS research to the OPGP to increase the number of ALS clinical trials. This program supports and advances the development and evaluation of new treatments for ALS and other rare diseases.
• Study to Make ALS Livable National Academies of Sciences (NAS)
  Congress must provide at least $1 million for a NAS study to provide the government and all stakeholders with a blueprint for action to make ALS livable. The study must include how to develop more effective and meaningful treatments and cures; interventions to reduce and prevent the progression and complications of ALS; the type and range of care and services people with ALS and their families need and how to ensure they receive comprehensive, quality care; what care, services and preventive measures people at risk of ALS need; and how to improve the quality-of-life, health and well-being of affected individuals and families.

• Justice for ALS Veterans Act (H.R. 3790 /S. 1590) Congress must support and pass the Justice for ALS Veterans Act, which seeks 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. This important legislation aims to provide the recognition and assistance these families deserve.

• Elizabeth Dole Home Care Act: (H.R.542 /S. 141) Congress must pass the bipartisan Elizabeth Dole Act which aims to bolster caregiver support at the U.S. Department of Veterans Affairs by creating a user-friendly resource center and expanding VA Home-Based Community Services nationwide. This legislation seeks to improve caregiver transition, develop assessment tools, establish a digital hub for resources, enhance mental health services, and foster collaboration between the VA, nonprofits, and Veteran Service Organizations. Military and veteran caregivers, numbering over 7.8 million in the U.S., make significant sacrifices to care for their loved ones and save the nation more than $15 billion annually.

• Air Carrier Access Amendments Act (H.R. 1267/S. 545) It is essential for Congress pass the Air Carrier Access Amendments Act, which will establish a formal channel for individuals with disabilities facing air travel discrimination to register complaints with the U.S. Department of Transportation. Additionally, this legislation will set forth new accessibility standards for aircraft, ensuring that individuals who use wheelchairs and complex mobility devices have equal access and a more inclusive air travel experience.

• Credit for Caring Act (H.R. 3321/S. 1670)
  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 up to $5,000 per year for family caregivers who spend, on average, $7,242 annually out-of-pocket.

There are currently no biomarker tests on the market for ALS. However, a tremendous amount of research is being done in this area. Inevitably, there will be biomarkers identified and tests available for ALS in the future, so making sure states have policies on the books to ensure coverage and access to biomarker testing while also protecting against discrimination related to that testing is important for people living with ALS.

Medicare supplemental insurance policies, also known as "Medigap," are sold by private insurance companies that aim to fill the gap in original Medicare for eligible enrollees living with high-cost conditions like ALS. However, under current law in many states, individuals under the age of 65 living with ALS cannot buy Medigap plans at a price they can afford due to the absence of state policy. 

• Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/S. 1512)
  Congress must cosponsor and pass the CONNECT for Health Act to expand coverage of telehealth services through Medicare and make COVID-19 flexibilities permanent. 
• Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/S. 168)
  Congress must cosponsor and pass the TREAT Act to provide temporary licensing reciprocity for all health practitioners during the COVID-19 pandemic and future public health emergencies. 
• Remote Clinical Trial Access
  Congress and the FDA must support continued and permanent access to remote clinical trials. 
• State Health Care Professional Licensure Flexibilities
  State governments must maintain and expand licensure flexibilities that allow people living with ALS to access ALS specialized care and remote clinical trials through telehealth. 
• Multidisciplinary Care Access
  State governments must support and provide funding to increase access to multidisciplinary care at ALS clinics and other health care settings. Multidisciplinary care has been shown to increase the length of life for people living with ALS up to 9 months.

• 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.