Under a new directive from the Centers for Medicare and Medicaid Services (CMS), Medicare Advantage plans are now required to cover QALSODY® (tofersen), Biogen’s recently-approved treatment for people living with SOD1-ALS.
We strongly support this new directive. Study results suggest that reduction of neurofilament levels predicts slower progression of the disease, and that an early start and extended use of Qalsody may help stabilize muscle strength, respiratory function, and quality of life.
SOD1-ALS has a median survival of 2.7 years, which falls to 1.2 years for people with the faster-progressing A4V mutation. People living with SOD1-ALS must be able to access this treatment without delay.
We’re proud to have helped make this treatment possible. SOD1 was co-discovered at the Les Turner ALS Center at Northwestern Medicine in 1993. It was the first genetic cause identified for ALS. The Lois Insolia ALS Clinic was a site for both the Phase 3 clinical trial of tofersen and the open label extension. Dr. Senda Ajroud-Driss, the clinic’s director and Les Turner ALS Foundation / Herbert C. Wenske Professor of Neurology at Northwestern’s Feinberg School of Medicine, was a site investigator of the study.
Our support services team helps people living with ALS and their families with guidance on Medicare, Social Security Disability Insurance, and Medicaid, among many other topics.
We’re grateful to everyone who donates to make it possible for us to support people living with ALS and to fund research toward better treatments and cures for the disease. The work never stops — not until we’ve created a world free of ALS.
