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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."

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