2021 Public Policy Priorities

Our federal advocacy work focuses on educating and mobilizing all members of Congress and the Administration in a nonpartisan fashion to achieve the mission of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

Accelerate Development, Approval and Access to Effective New Treatments

Congress should re-introduce and pass the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act. People with ALS urgently need effective new treatments. FDA must be fully funded, fully staffed and provided the regulatory authority they need to be fast and effective and speed ALS trials and drug approvals.

Increase Federal Funding for ALS Research

People with ALS urgently need the federal government to increase investments in ALS research that will lead to the discovery of effective treatments and a cure. This means we need more ALS scientists, more ALS clinical trials, and more ALS research that can lead to effective treatments and prevent new cases of ALS.

1. National Institutes of Health Funding for ALS Department of Health and Human Services
   Congress should increase funding to at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
   
   
2. ALS Research Program (ALSRP) Department of Defense
   Congress should increase funding to at least $60 million for the ALSRP in fiscal year 2022 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials.
   
   
3. Orphan Products Grants Program (OPGP) Food and Drug Administration
   Congress should provide at least $50 million specifically for ALS research to the OPGP in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
   
   
4. National ALS Registry and Biorepository Centers for Disease Control and Prevention
   Congress should provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and collect biospecimens that will lead to a better understanding of who may develop ALS.
   
   
5. National Academies of Sciences, Engineering and Medicine (NASEM) study
   Congress should provide at least $1 million for an NASEM study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
   
   

Permanently Extend Access to Telehealth for People Living with ALS

People with ALS must continue to have full access to safe, high-quality care via telehealth at home. Congressional expansion of telehealth has proven to be critically important for people with ALS throughout the COVID-19 public health emergency. Congress must permanently extend these expansions and ensure that all health care services important to people with ALS are covered by telehealth.

Provide High-Quality, Affordable, and Accessible Health Care

People with ALS must have health care that is high-quality, affordable, and accessible. This includes enhancing all aspects of health care coverage; protections for pre-existing conditions; reducing costs for Medicare coverage including home infusion and other specialized outpatient and in-patient medical care; durable medical equipment (wheelchairs, speech generating devices, breathing equipment); and all medications needed by people with ALS.

Increase Veterans Benefits for People with ALS and their Families

Veterans with ALS serving in any branch of the United States Armed Forces are more likely to develop and die from ALS. As a result of The ALS Association’s efforts, the Veterans Administration recognizes ALS as a service-connected disease and provides additional financial and health care benefits. The ALS Association will continue to fight to ensure that veterans living with ALS and their families receive the best health care and maximum benefits possible.