WASHINGTON, DC — Taxpayers invested hundreds of millions of dollars into a new cure for sickle cell disease, a devastating illness that impacts 1 in 365 African Americans, according to a new report from Patients For Affordable Drugs. In the report, “Taxpayer-funded Drugs and a Pricing Crisis,” the patient advocacy organization calls on the National Institutes of Health and Congress to review how American taxpayers fund research into new medicines, how the intellectual property is transferred to drug makers, and how to ensure that our system balances incentives for innovation with policies that maximize patient access to lifesaving cures.

Read the new report here.

In a March interview with 60 Minutes on the promising results of a gene therapy trial, Dr. Francis Collins, Director of the National Institutes of Health, said: “I am daring to say a cure for sickle cell disease may even be now at hand.” The National Institutes of Health — the U.S. government agency that leads scientific research and discovery — invests $100 million each year into research on possible cures for sickle cell disease. And 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.

“When pharmaceutical companies are allowed to price gouge for publicly funded discoveries, the American people pay three times. First as taxpayers investing in research at the NIH, second as patients at the pharmacy counter, and a third time through tax dollars that support America’s largest health insurance programs — Medicare and Medicaid,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs. “We must restore balance that ensures innovation at prices America can afford.”

Amy Mason-Cooley is a sickle cell patient and advocate from Alabama: “A cure for this disease would change the lives of so many people across the country. However, the cure will not help those who cannot afford it.”

In addition to today’s report, Patients For Affordable Drugs:

• Sent a letter to Francis Collins, director of the NIH, containing our report, analysis, patient perspectives, and ideas on including pricing arrangements in technology transfer agreements with pharmaceutical corporations.
• Will engage the public and patients in a letter-writing and social media campaign that encourages the NIH not to sell out the sickle cell community.
• Will elevate the sickle cell patient voice on social media and in written stories.
• Secured meetings with lawmakers on Capitol Hill to discuss the report’s findings and encourage action on this issue.