The Food and Drug Administration (FDA) has approved a drug, Emflaza (deflazacort), to treat the devastating and progressive disease Duchenne muscular dystrophy (DMD). And while this should be a victory for those who suffer from the condition that gradually deteriorates their muscles, unfortunately Marathon Pharmaceuticals has hiked up the price 70 times, charging patients a whopping $89,000 per year.
The drug itself acts as a corticosteroid to help decrease inflammation and thus the activity of the disease. It has been available for a few decades in Europe to treat DMD, where it has been offered at a fraction of the cost.
Marathon Pharmaceuticals, however, says that after rebates and vouchers, patients (or their insurance companies) will pay approximately $54,000 a year for the drug.
Because the drug is categorized as an “orphan drug,” or one used to treat very rare diseases, the company now has seven years of exclusive rights over its use in the United States—meaning if patients want a cheaper alternative, they will be unable to find it within America.
“This is the first treatment approved for a wide range of patients with Duchenne muscular dystrophy. We hope that this treatment option will benefit many patients with DMD.”
And while the drug may have many benefits, it is almost completely useless if patients and their families are unable to afford them.
According to studies, those who took this new drug were able to maintain more muscle strength longer than patients who took placebos. It was also found that patients lost the ability to walk much later than those who were not taking any medication.
And while that might be a huge leap forward in the treatment of DMD, it also represents a huge problem with the FDA and pharmaceutical companies if they can legally get away with charging more per year for a drug than many families earn, in addition to cornering the market.
Aaron Kesselheim, an associate professor of medicine at Harvard Medical School, stated of the move:
“Instead of making the price at a level that is reasonable for patients, they make it a very high price and offer this pathway that patients may not qualify for, they may not know about, there may be limitations on it. So it’s a marketing move and not really a public health solution.”
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