In a surprise move Monday, Marathon Pharmaceuticals told patient advocates that it would “pause” the launch of its drug Emflaza because of pricing concerns expressed by patients and advocacy groups.
The drugmaker had announced an $89,000 annual price tag for its newly approved drug last week but patients and lawmakers immediately cried foul.
“What you’re doing is robbing my insurance company,” said Dana Edwards, a mother from New Jersey whose 12-year-old has taken deflazacort, the generic version of the drug, since he was five years old.
Newly approved Emflaza treats Duchenne muscular dystrophy, a rare, devastating neuromuscular disorder. Patients have been importing the generic version of the drug from overseas for about $1,200 a year.
A statement read to a conference of parents, patients and advocates in Washington, D.C., and attributed to Marathon CEO Jeffrey Aronin said: “Our goal in commercializing Emflaza all along has been to make it available to that broader set of patients who prior to FDA approval have not had access to the therapy … We are pausing our launch, which has not yet taken place. We have not sold any new product and will pause that process.”
Pat Furlong, the president and founder of Parent Project Muscular Dystrophy, which sponsored the Monday morning conference, read the statement to an outraged crowd in a conference room at the Mayflower Hotel.
The company will continue to offer patients an expanded access program, Furlong read, which allows about 800 patients to receive the drug from the company. More can join that program for free, and patients can continue importing drugs from Canada or “wherever they are getting it,” the statement said.
Furlong told the audience that complaints from patients helped to prompt Marathon’s action: “Since last week’s approval, they’ve heard from all of us,” he said.
Late Monday, Marathon released a statement and open letter to the Duchenne community, elaborating on its goals of patient access and promising that “price should not be a barrier.”
“Put simply we expect patients will pay a standard copay of typically $20 or less per prescription,” the statement reads.