Patients with insurance coverage say the price tag set by drugmaker Amylyx Pharmaceutical is fueling insurance delays or denials, and sometimes exorbitant out-of-pocket expenses.
WASHINGTON — For two years, Becky Mourey pushed the Food and Drug Administration to approve an experimental drug for her Lou Gehrig’s disease.
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. Some ALS patients are covered by private plans, while others receive government coverage through programs like Medicare. “It’s just stressful and aggravating to get these multiple denial letters,” said Jim Mourey, who cares for his wife full time at their home in Hopkinton, Massachusetts.
Layne Oliff, 63, hasn’t yet decided whether to seek coverage from his Medicare plan. Under the federal program, he would likely owe $7,400 in copays for Relyvrio before reaching his out-of-pocket maximum. That’s on top of monthly administration fees of over $600. Other insurers are initially rejecting coverage or requiring multiple rounds of documentation from doctors.
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