Public Policy Priorities

We concentrate our advocacy efforts on informing and rallying policymakers across the political spectrum on legislation and funding that will improve the lives of those with ALS, their families and caregivers.

ALS United Rhode Island advocates for legislative priorities that will help to:

Find New Treatments and Cures

Optimize Current Treatments and Care

Improve the lives of people with ALS

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)
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.

The federal government must act with urgency to support ALS treatment development and approval.

Swift Consideration and Approval of New Drugs at the FDA
The FDA must use every tool and opportunity it has to fast track the review and approval of new drugs for ALS. People living with ALS are willing to tolerate much greater risk on drugs that meet endpoints including clinically meaningful delay in ALS progress, a strong safety profile, significant survival benefit and an advance beyond or on top of currently available ALS care. We need an FDA that fully funds and staffs ALS issues and remains attuned to the needs of the ALS community.

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.

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.

Federal and state governments must support and fund programs for people living with ALS that increase access to specialized ALS care both during and after the COVID-19 public health emergency.

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.

Improve the lives of people with ALS

Congress must act to improve the lives of people living with ALS their loved ones by supporting policies that will positively impact their lives.

Justice for ALS Veterans Act (H.R. 5607/S. 3483)
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 (H.R. 3765/S. 630)
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 (H.R. 1619/S. 642)
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 (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.

State governments must support and fund programs for people living with ALS and their loved ones that improve their lives.

Increase Funding for Caregiver Support Programs
State governments must support and provide funding to increase access to caregiver support programs, including respite care, home- and community-based care, and local ALS support services.
Increase Access to Broadband and Assistive Technology
State governments must support and provide funding to increase access to technology that allows people living with ALS to engage with the world as they wish, including access to broadband and more effective assistive technology.
Increase Access to State-Funded Health Care and Comprehensive "Wrap Around" Services
State governments must support and provide funding to increase access to services that improve the quality of life for people living with ALS and their loved ones, including transportation, housing, nutrition and home modification services.
Increase Access to Specialized Services
State governments must support and provide funding for specialized services that address the unique needs of people living with ALS during public health emergencies, disasters and in rural or remote areas.