UPDATE – APRIL 2024: Relyvrio was voluntarily withdrawn from the market by Amylyx following a phase 3 trial that failed to show it was effective. The ALS Association stands by its decision to push for early approval of Relyvrio given the promising phase 2 trial data and the safety of the treatment. At the time, we said that if it turns out to be ineffective, at worst, people living with ALS would have taken an ineffective therapy without risk of harm. If it was indeed effective, delaying access would have meant that people living with ALS would have lost two years of being able to take a life-extending therapy. In the interests of transparency and education, we are leaving this information up for future reference. People living with ALS need life-saving treatments and we are working as urgently as possible to advance the many more potential treatments in clinical trials.
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.
Future blogs will go into more detail about how advocates can engage in the fight to win new funds and secure policy change at the Federal and State level. To follow along with the latest updates, subscribe here. Learn more about the Association’s extensive list of public policy priorities here and go here to sign up as an ALS Advocate.
