Six advocacy groups have asked the federal government to sidestep a handful of patents on a pricey drug used to treat a rare form of muscular dystrophy as part of an ongoing campaign to provide wider access to high-cost medicines.
In a letter sent on Wednesday to the Department of Health and Human Services, the groups argued that the patents — which are either owned or licensed by Sarepta Therapeutics (SRPT) — failed to disclose federal funding for grants that were used to develop a drug known as Exondys 51 for treating Duchenne muscular dystrophy. This is an accompanying memo sent to HHS.
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As a matter of healthcare ethics and public policy, the government should note that Sarepta, in its third quarter investor call, projected that they would generate $300M in revenues from Exondys 51 in 2018. The patient population or Exondys 51 is only 13% of the Duchenne population of only 2,000 – 3,000 people, or perhaps fewer than 300 people. Especially since Sarepta’s drug was developed from NIH funded research, this unconscionable pricing must be stopped.
President Trump, please make this very critical medicine affordable for anyone to purchase. Thank you.
A ge 8yers
In light of the pricing in this post, the fears reported earlier in the day of a tariff on Chinese raw materials causing rise in drug prices seem ….. overblown at a minimum and ludicrous as well.