Public Policy Priorities

Our advocacy work focuses on educating and mobilizing members of Congress and the Administration in a nonpartisan way to achieve our mission of discovering new treatments and cures for ALS, and serving, advocating for and empowering people living with ALS to live their lives to the fullest.

The ALS Network actively advocates for legislative priorities that will help to:

Expand Research Funding and Clinical Trial Access

Enhance Financial Support Systems

Improve Healthcare Access and Coverage

Advocacy News

Jim And John 10th Anniversary Of Obergefell V. Hodges

Celebrating Pride Month and Honoring 10 Years Since Obergefell v. Hodges

June 20, 2025

Collaborating for Change at the 2025 ALS Community Summit

June 3, 2025

CNN: Harvard expert warns of danger to key public health research as a result of funding cuts

May 30, 2025

Current Legislation Efforts

Expand Research Funding and Clinical Trial Access

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.

ALS Congressionally Directed Medical Research Program (ALS CDMRP)
Congress must invest in clinical research by increasing funding to $80 million for the ALS CDMRP program at the Department of Defense (ALSRP) in FY2026. In the United States, Veterans are twice as likely to develop ALS. In FY2024, it was reported that ALSRP received $80 million+ in research proposals that were scored at the fund level; double the Congressionally allocated amount. This meant numerous high-quality research projects for novel ALS therapies were unfunded. If we are to end ALS, a currently terminal, underfunded disease, we cannot let high-quality research go unfunded. We must fund research to understand and find treatments for a disease that is service-connected, has a higher incidence among Veterans, and has direct relevance to the health of our military.
Accelerating Access to Critical Therapies (ACT) for ALS Act
Congress must fully fund the ACT for ALS at $100 million for FY2026, specifically allocating $75 million for the National Institute of Health (NIH) expanded access program under section 2 and $25 million for the Human Services (HHS) Public-Private Partnership for Rare Neurodegenerative Diseases and FDA Rare Neurodegenerative Disease Grant Program. Any funds that NIH cannot use for expanded access should go towards therapeutic research development to advance new ALS therapies. We also request the FDA continue to exercise its 2019 guidance on regulatory flexibility and to consider patient tolerance for risk in ALS drug approvals.
ALS Research Funding National Institutes of Health (NIH)
Congress must support NIH funding for ALS research. A reduction in research funding for ALS poses a significant risk to the progress of developing new therapies, identifying biomarkers, and ultimately finding a cure for ALS. Therefore, we request an increase in funding to provide $180 million in 2026 for pre-clinical and clinical ALS research.
National ALS Registry and Biorepository Centers for Disease Control and Prevention (CDC)
Congress must address underfunded research at the Centers for Disease Control and Prevention (CDC). CDC currently receives $10 million in funds for the National ALS Registry and Biorepository. We request an increase to $15 million to maintain this program and support research into causes and prevention strategies for sporadic and familial (genetic) ALS that can lower the incidence of ALS, including environmental impact.
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.

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.

Enhance Financial Support Systems

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 (S. 1261)
Congress must cosponsor and pass the CONNECT for Health Act to expand coverage of telehealth services through Medicare and make COVID-19 flexibilities permanent.
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.
Credit for Caring Act of 2025 (H.R. 2036/S. 925)
Congress must cosponsor and pass the Credit for Caring Act to provide relief in the form of a new federal tax credit of up to $5,000 for working family caregivers.
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.

Improve Healthcare Access and Coverage

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.

CONNECT for Health Act (S.1261)
Congress must cosponsor and pass the CONNECT for Health Act to expand access to telehealth services permanently and ensure that individuals can receive care from the comfort and safety of their homes.
Justice for ALS Veterans - HR1685, S749
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 reintroduce 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 reintroduce 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.

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

Create a State-Level ALS Registry
ALS Network is advocating for a statewide ALS registry that would require hospitals and healthcare professionals to report each case of ALS. IMPORTANT UPDATE
Increase State Funding for ALS Research
ALS Network is spearheading efforts for a Voluntary Tax Contribution Fund allowing Californians filing their State income taxes to donate an amount of their choice to fund ALS research. IMPORTANT UPDATE
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 “Wraparound” 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.

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