ALS Association Announces 2023 Federal and State Public Policy Priorities

The ALS Association is launching an ambitious slate of federal and state policy priorities for 2023. The priorities build upon the successes achieved and focus on augmenting our work to accelerate the search for new treatments and cures, optimize care for people living with ALS today, prevent ALS, and empower everyone with ALS and their families to live life on their own terms.

Federal and state policy priorities will guide legislative and regulatory advocacy initiatives and can be sent (either as links or downloaded documents) to policymakers. Learn more about the Association’s federal policy priorities and state policy priorities.
 
“Our priorities make it clear to policymakers at all levels of government and in all branches of government that they must act now to provide more funding for ALS research and care services, ensure access to affordable care, and remove the deliberate and unnecessary barriers that negatively impact quality and quantity of life,” said Melanie Lendnal, senior vice president of public policy for The ALS Association. “People with ALS cannot wait and much, much more needs to be done.”

With the help of advocates, we’ve achieved a lot. Access to telehealth was extended beyond COVID-19. New dollars were secured for ALS research at the National Institutes of Health, the Department of Defense and the National ALS Registry and Biorepository. After a lot of hard work, FDA approved oral Radicava and Relyvrio; efforts are now focused on convincing public and private insurers to cover these new drugs. Under the ACT for ALS, expanded access funds make it possible for some ALS clinics to help people who are not eligible for clinical trials. FDA also has new funds to improve the speed and effectiveness of clinical trials.
 
Our newly launched State Policy & Advocacy Department is in full swing working diligently across all 50 states and D.C. We won new funding for care services to support people living with ALS. Equally important, we nurtured relationships with state legislators who will champion bills in support of making ALS livable by 2030. Of top importance is ensuring that all states require Medicare Supplement/Medigap insurers to offer accessible and affordable plans to people living with ALS to help offset some of the costs not covered by traditional Medicare, that polices aimed to shift higher copay costs to patients are reformed, and that discrimination in insurance coverage based on genetic testing is stopped.