UPDATE – APRIL 2024: Relyvrio was voluntarily withdrawn from the market by Amylyx following a phase 3 trial that failed to show it was effective.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.
We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were insufficient to ensure timely access to Relyvrio for people living with ALS.
Cigna is putting profits above the lives of people living with ALS. The additional burdens it is placing on families by limiting access to an FDA-approved medication are cruel and outrageous.
We know fighting a multi-billion-dollar insurance company is a David-and-Goliath fight, but our community is willing to do whatever it takes to ensure people living with ALS get the care they need and deserve.
We encourage people living with ALS who have been denied access to treatment by their insurance company to file official complaints with their state insurance commissioners. These complaints can spur regulators to issue formal findings against a company for inappropriately restricting access to treatments.
If your insurance company has denied you access to a drug approved to treat ALS, file a complaint with your state insurance commissioner, click here. This document will help guide you through the process.
