KANSAS CITY, Mo. — A new treatment that aims to extend the lives of ALS patients by several months should be available in the coming weeks.
The FDA approved Relyvrio Thursday with the goal of slowing down the deadly degenerative disease, amyotrophic lateral sclerosis.
Day-by-day, Karen and Tony Vick conquer Tony’s diagnosis together, sharing videos with the world.
“I’ve been diagnosed for over five years, and the average life expectancy is two to five years,” Tony Vick said. “So, I’m already blessed to be on the small percentage that lives past that window.”
Tony Vick, a veteran who receives care through the VA, says months back, he was chosen to take Relyvrio, made by the company, Amylyx.
Vick’s sample is small, but he has noticed less fatigue.
Colleen Wachter, the executive director of the Mid-America chapter of the ALS Association, says the treatment is long overdue.
“It extends life by 10 months, and it helps reduce risk of hospitalizations, which is huge for people for people with ALS,” Wachter said.
Greg Canter has been taking it for years with the study.
“I wouldn’t be alive right now,” Canter said. “The medicine is keeping me alive. It’s extended my life.”
According to reports, the treatment will cost more than $150,000 per year. Amylyx said that won’t be passed down to patients, expecting insurers to cover.
“Who could afford that, especially on top of the cost of living with ALS as a whole?” Karen Vick said.
The Vicks’ hope is the research done on Relyvrio will help lead us to a cure.
Amylyx provided the following statements on their treatment and any associated costs from Co-CEOs Josh Cohen and Justin Klee:
“Last week’s FDA approval of RELYVRIO is an exciting milestone for the ALS community and is a major step toward achieving Amylyx’ mission to one day end the suffering caused by neurodegenerative diseases. RELYVRIO is the first approved drug for ALS to demonstrate a statistically significant benefit in function in a clinical trial as well as an observed benefit on survival in a longer-term post hoc analysis. These robust data were published in in the peer-reviewed medical journals New England Journal of Medicine, Muscle & Nerve, and the Journal of Neurology, Neurosurgery, and Psychiatry. Amylyx’ goal is that every person who is eligible for RELYVRIO will have access as quickly and efficiently as possible as we know people with ALS and their families have no time to wait. Our teams are in place and ready to help people living with ALS gain access to this important new therapeutic option.”
“Amylyx’ goal is that every person who is eligible for RELYVRIO will have access as quickly and efficiently as possible as we know people with ALS and their families have no time to wait. Healthcare professionals are able to write prescriptions for RELYVRIO now and enroll people living with ALS into our comprehensive support program called Amylyx Care Team (ACT) Support Program. Amylyx teams are in place and ready to help people living with ALS gain access to this important new therapeutic option.
ACT provides people living with ALS who have been prescribed RELYVRIO and their loved ones, with a dedicated, single point of contact to guide their treatment journey, helping to aid with navigating through insurance in an effort to overcome potential barriers to access. ACT helps confirm coverage and provides financial assistance options to eligible individuals with out-of-pocket costs, which includes:
- For people with ALS who have commercial insurance, Amylyx is committed to providing financial assistance by bringing co-pays to $0.
- While pharmaceutical manufacturers cannot offset copayments for people covered by government insurance, Amylyx is working to ensure that people with government-funded insurance, like Medicare or Medicaid, will have access to RELYVRIO as quickly as possible. The Amylyx Care Team will be able to provide people with government-funded insurance information on potential options for financial assistance with co-pays.
- In addition, for U.S. residents with ALS that are uninsured or underinsured, meet certain financial eligibility criteria, and who have exhausted all other options, Amylyx intends to provide RELYVRIO at no cost.
ACT also provides education, support, and resources to help adults living with ALS.”