ALS patients contend with $158K price tag on new drug

Washington: For two years, Becky Mourey pushed the Food and Drug Administration to approve an experimental drug for Lou Gehrig’s disease.

She went to members of Congress and health regulators to make the case for Relyvrio, until patient-advocates finally prevailed.

In September, Relyvrio became only the third drug approved in the U.S. for ALS, or amyotrophic lateral sclerosis, an incurable neurodegenerative disease that is usually fatal within five years. But patients and physicians who celebrated Relyvrio’s approval several months ago are now contending with the obstacles posed by the U.S. healthcare system.

Their odyssey is an object lesson in the soaring cost of specialty drugs and the byzantine systems that insurers have created to try and control them.

Patients with insurance coverage say the $158,000 per year price tag set by drugmaker Amylyx Pharmaceutical is fueling insurance delays or denials, and sometimes exorbitant out-of-pocket expenses.

Mourey’s insurer initially refused to cover Relyvrio, but reversed itself seven weeks later after online pressure— including social media posts by Mourey and other ALS advocates.

“Amylyx priced it way too high,” said Mourey, 58, a former music teacher, who now communicates using a vision-controlled speech computer. “They could cut the price in half and still make a hefty profit.”

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