Holiday celebrations and traditions are times of fun, fellowship and of course, food. And, while the holidays are meant to be enjoyed, they can also be a tremendous stressor for people living with ALS and their families.
The ALS Association recently sent letters to 43 of the largest insurance companies and health care payers to make RELYVRIO, which was formerly developed as AMX0035 and approved by the FDA for use in the treatment of ALS in September, available and accessible for people living with ALS.
We are urgently working to find new treatments and cures for ALS and are currently funding over 168 research projects in 12 countries. We work with many pharmaceutical companies that have attempted to bring new treatments to market – some successful and some unsuccessful.
On some occasions, the ALS Association takes a public stance on the effectiveness of an experimental therapy. This is never easy, as there is rarely universal certainty about scientific research or the findings of individual research studies. We consult with outside independent experts before taking any position. If the drug sponsor is unwilling to provide the sufficient level of information to answer the questions we have and our independent reviewers have, we will not take a position on how well an experimental treatment works. We will simply continue to urge the FDA to move forward as quickly as possible, staying consistent with its 2019 Guidance on ALS clinical trials.