Skip to main content

Sign up for our newsletter.

Quality journalism. Progressive values. Direct to your inbox.

ALS patient Steve Gleason attends an event to raise awareness about the disease

ALS patient Steve Gleason attends an event to raise public awareness about the fatal disease on February 10, 2013 in New Orleans, Louisiana. (Photo: Skip Bolen/Getty Images)

$158,000 Cost for ALS Treatment Called 'A Poster Child' for Unjust Drug Pricing

"The price of the newly approved drug combination Relyvrio to treat ALS," said one critic, "is yet another clear and powerful example of unjustified high prices set by drug companies that ultimately exploit patients."

Jake Johnson

Patient advocates on Tuesday condemned Amylyx Pharmaceuticals for setting the price of its newly FDA-approved ALS treatment at a staggering $158,000 a year, more than five times the top-line cost recommended by independent analysts.

Last week, the FDA formally approved Relyvrio to treat patients with amyotrophic lateral sclerosis, a progressive and rapidly fatal disease of the nervous system that currently affects tens of thousands of people in the United States.

"There is no justification for pricing Relyvrio, a drug that has not been proven effective, at $158,000."

Relyvrio, the first ALS treatment the FDA has approved in five years, is not a new drug but a combination of sodium phenylbutyrate and taurursodiol—a pairing that some research suggests can slow the disease's progression.

Personal anecdotes from ALS patients, many of whom celebrated the FDA's approval decision, also indicate the treatment can be effective, though the agency conceded that evidence for Relyvrio's effectiveness is still lacking.

A day after receiving approval from the FDA—which is barred from weighing the potential cost of a drug in its decision-making process—Amylyx announced an annual list price of $158,000 for Relyvrio. Experts at the Institute for Clinical and Economic Review, a nonprofit that analyzes medicine costs, published an assessment in August suggesting that Relyvrio should be priced somewhere between $9,100 and $30,600 per year assuming the treatment is effective.

"The price of the newly approved drug combination Relyvrio to treat ALS—a terrible neurological disease—is yet another clear and powerful example of unjustified high prices set by drug companies that ultimately exploit patients desperate for new treatments," David Mitchell, a cancer patient and president of Patients For Affordable Drugs, said in a statement Tuesday.

"This is not a new drug that required years of expensive, high-risk research in a lab; Relyvrio is a combination of two old drugs," Mitchell noted. "It was approved based on a small trial of 137 patients over 24 weeks, not an expensive, large, long study."

"There is no justification for pricing Relyvrio, a drug that has not been proven effective, at $158,000," he added. "It is a poster child for what is wrong with drug pricing in America and why our system must be reformed to arrive at appropriate prices that maximize accessibility and affordability for drugs that are shown to be both safe and effective."

Amylyx officials said during a conference call with investors last week that they expect insurers to absorb most of the costs of Relyvrio for ALS patients who opt to try the treatment—a claim that experts greeted with skepticism.

"We all pay for the premiums of our health plans," Stacie Dusetzina, an associate professor of health policy at Vanderbilt University Medical Center, told Politico.

"We're not talking about them setting a price to recoup their investments or anything like that," said Dusetzina. "This is basically taking advantage of the fact that we allow the price to be what the market will bear." Research published earlier this year found that roughly half of all new brand-name prescription drugs launched in the U.S. in 2020 and 2021 had an original price tag of at least $150,000 a year.

In addition to concerns about costs for ALS patients with commercial insurance, analysts have warned that Medicare Part D recipients who attempt to access Relyvrio "may be in for a significant cost-sharing burden."


Our work is licensed under Creative Commons (CC BY-NC-ND 3.0). Feel free to republish and share widely.

We've had enough. The 1% own and operate the corporate media. They are doing everything they can to defend the status quo, squash dissent and protect the wealthy and the powerful. The Common Dreams media model is different. We cover the news that matters to the 99%. Our mission? To inform. To inspire. To ignite change for the common good. How? Nonprofit. Independent. Reader-supported. Free to read. Free to republish. Free to share. With no advertising. No paywalls. No selling of your data. Thousands of small donations fund our newsroom and allow us to continue publishing. Can you chip in? We can't do it without you. Thank you.

'Cleaner Air Is Coming' as London Expands Vehicle Pollution Fee to Entire Metro Area

"Around 4,000 Londoners die prematurely each year because of long-term exposure to air pollution, with the greatest number of deaths in outer London boroughs," noted Mayor Sadiq Khan in announcing the expansion.

Brett Wilkins ·


'Amazing News': Historic Shark Protections Approved at Global Wildlife Convention

Up to 90% of sharks targeted by the lucrative fin trade will now be protected, said one advocate.

Julia Conley ·


'The Nightmare Materializes': Far-Right Extremist Itamar Ben-Gvir to Be Israel's National Security Minister

The Foreign Affairs Ministry of the Palestinian Authority said Ben-Gvir's elevation to national security minister could have a "catastrophic impact on the Israeli-Palestinian conflict."

Jake Johnson ·


Raging Wars, Soaring Hunger Put Women and Girls in Crosshairs, Warns UN

"A toxic mix of crises—conflicts, climate, skyrocketing costs, and the ripple effects of the Ukraine war—are inflicting a devastating toll on the forcibly displaced. This is being felt across the world, but women and girls are particularly suffering."

Brett Wilkins ·


Greta Thunberg Joins 630+ Young People in Landmark Climate Lawsuit Against Sweden

"The Swedish state fails to meet the constitutional requirement to promote sustainable development leading to a good environment for present and future generations," said the plaintiffs.

Julia Conley ·

Common Dreams Logo