July 31, 2019 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.



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