Accelerate Research and Technology

Federal funding for ALS research is essential in the development of new treatment options to cure ALS, prevent ALS and improve the lives of people living with ALS. Every year Congress must pass appropriations to fund the government and every year we will continue to advocate for an increase in funding for ALS research.

ALS Research Supported by the Federal Government:

• ACT for ALS Act: ALS Research and Expanded Access Funding – Department of Health and Human Services (NIH & FDA): Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79) to help the 30,000 Americans living with ALS.
   
• ALS Research Funding – National Institutes of Health (NIH): Congress must increase funding for ALS research at NIH to support research on ALS. In FY24, NIH estimates its funding will be $143 million for scientific research. A $30 million increase every year can lead us to a cure for ALS.
   
• ALS Research Program (ALSRP) – Department of Defense (DOD): Congress must increase funding to $80 million for the ALSRP for the 3,500 veterans living with ALS. This program is the only federal research program dedicated solely to 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.

New Federal Funding for ALS Research:

The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research and Innovation in Neurological Science (HEALTHY BRAINS) Act establishes a new grant program to support research on environmental and occupational risk factors for ALS. With a $50 million investment in the next five years, we can prevent, treat, and slow the progression of ALS and other neurological diseases.

Your Experience with ALS Matters:

The FDA can use patient experience as a part of a new drug application. The Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act requires the FDA to share how your preferences were used in their decision making.

Optimize Current Treatments and Care

Access To Timely, Quality Care:

Delays in ALS care can grossly affect the lifespan of people living with ALS. It is vital we pass legislation to avoid care disruptions. ​

• ALS multidisciplinary clinics offer a wide range of health care services to people living with ALS and their families. In order to reduce your wait time to see your care team and maintain access to them we strongly encourage the passage of the ALS Better Care Act.
• The Safe Step Act places creates an exception process to medication step therapy protocols people with ALS encounter when trying to access critical drug therapies. 
• Prior authorization unnecessarily delays access to care, the Improving Seniors Timely Access to Care Act creates new electronic prior authorization standards to streamline approvals in Medicare Advantage plans.
• Telehealth has become an essential extension of one’s ALS treatment plan. We urge Congress to permanently extend these flexibilities for telehealth services in Medicare to ensure that your care is adjusted in a timely manner to reflect the rapid changes of ALS.

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.

Access to Affordable Care, Prescription Drugs and Devices:

As more drugs, devices and diagnostic tool for ALS are approved, we want to make sure you can access and afford them.

• The HELP Copays Act ensures any copay assistance you receive are counted toward your deductible and out-of-pocket maximum.
• If you choose genetic testing for ALS, the Access to Genetic Counselor Services Act would allow Medicare to cover these services.
• The RARE Act will give the FDA the necessary authority to approve one drug from multiple manufacturers if the drug can be used for rare patient populations like ALS.

Reduce the Harms of ALS

The financial impact of ALS is extensive with the average out-of-pocket cost of $250,000 per year. Congress must support policies that will positively impact the lives of people living with ALS and their loved ones.

• The Harley Jacobsen Clinical Trial Participant Income Exemption Act would remove the tax burden associated with clinical trials by removing the reporting requirement on income received for participating in a clinical trial.
• The Credit For Caring Act would create a tax credit up to $5,000 per year for out-of-pocket costs of family caregivers

Family caregivers are the backbone of ALS care. Federal legislation to reduce the impact of ALS on families is fundamental.

• Most ALS family caregivers become the lead care coordinator, the Connecting Caregivers to Medicare Act of 2024 allows these caregivers access their loved ones health information.
• The Alleviating Barriers for Caregivers Act encourages the simplification of processes and procedures caregivers encounter with Medicare and Medicaid.
• Family caregivers may choose to exit the workforce to care for their loved ones, the Social Security Caregiver Credit Act provides retirement security for caregivers.
• The Justice for ALS Veterans Act would increase benefits for surviving spouses and families of veterans with ALS.

View Our State Public Policy Priorities