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A group of US senators wants Marathon Pharmaceuticals to provide a wealth of data about a newly approved rare disease drug, citing concerns that the $89,000 pricing “unfairly exploits” patients when an older steroid can be purchased online for roughly $1,000 from foreign pharmacies.

In a letter sent to the drug maker last Friday, the lawmakers asked Marathon to explain its price tag, profit projections, how much money was spent on clinical research, and details of its patient assistance program, which the company has maintained will ensure that its drug is affordable.


The medicine was approved to treat Duchenne muscular dystrophy, an illness that mostly affects young boys, causes muscles to deteriorate, and leads to an early death. The Marathon pricing has outraged many parents, who will now be precluded from purchasing the older version from online pharmacies in the UK or Canada.

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  • It is very good for senators to criticize and control Marathon’s $89,000 DMD drug price gauging. But there is another DMD drug price gauging from Sarepta that is even more outrageous. While Marathon DMD drug price is $89,000, Sarepta DMD drug price is even crazier at $300,000 per patient per year. And even worse, Sarepta has NOT proven its drug has efficacy and safety yet. At least Marathon has proven Marathon DMD drug has efficacy and safety. Sarepta was required by the FDA to prove its drug has efficacy and safety in further trials, but those trials will not conclude until several years later. That is totally backward in process. Drug companies should prove their drugs have efficacy and safety first before seeking approval, not the other way around. Some smart insurance companies like Anthem and Kaiser refused to pay $300,000 for Sarepta’s no efficacy proof drug, but some silly insurance companies like Unitedhealth, Aetna and Humana are actually paying crazy $300,000 for the no efficacy proof Sarepta drug. That is a huge waste of society money. And that is part of the reasons everyone has to pay higher healthcare costs. A no efficacy proof drug should stay in the trials and providing to patients for FREE till the company can prove its drug has efficacy. If senators are really trying to help consumers, they should ask the FDA to withdraw all no efficacy proof drug approvals like the Sarepta drug case. Approving no efficacy proof drug does NOT lower healthcare costs. In Sarepta case, it actually increased healthcare costs by millions.

  • It was certainly prudent of Marathon to respond to out scribe with their position. The position as shared is…. hmmm, I believe the current phrases – “SAD.”. (I wouldn’t dream of calling it rapacious or predatory, although that’s what some people are saying.)

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