July 31, 2019 News, Press Releases

PATIENTS TO NIH: Don’t Sell Out Sickle Cell Community

WASHINGTON, DC — More than 1,300 patients signed a petition to the National Institutes of Health (NIH) sharing their concern that a potential cure for sickle cell — funded with at least $300 million in taxpayer investment — will be priced out of reach. Today, David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs, sent the petition and a letter to NIH Director Dr. Francis Collins, urging him to review policies under which taxpayer-funded discoveries are licensed to private corporations.

“It may have been acceptable for NIH to be indifferent to price when drugs came to market costing $200 or $2,000 per dose, but with new gene therapies priced at $2 million, price must be an element of technology transfer agreements to the private sector,” Mitchell wrote.

In a March interview with 60 Minutes on the promising results of a gene therapy trial, Collins said: “I am daring to say a cure for sickle cell disease may even be now at hand.”

A report released on July 9 by Patients For Affordable Drugs emphasized that public research dollars should prioritize public health — not private profit. The report found the NIH invests $100 million each year into research on possible cures for sickle cell disease. In addition, Patients For Affordable Drugs found that taxpayers already have invested more than $300 million into LentiGlobin BB305 — the specific breakthrough treatment likely to cure sickle cell disease.

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Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.