Contribute Try STAT+ Today

Sickle cell disease and cystic fibrosis are both rare, genetic diseases. While there are three times as many people (predominantly of African ancestry) in the U.S. with sickle cell disease compared to people (predominantly of European ancestry) with cystic fibrosis, research dollars are the same, after tallying federal funding from the National Institutes of Health and disease-specific foundations.

That per-patient funding gap has been known for decades. A new study, published in JAMA Network Open, translated those differing amounts into results: funding for researchers, scientific publications presenting discoveries, and drugs to treat patients. A team led by Duke hematologist John Strouse found a similar number of clinical trials but more scientific papers and drugs for cystic fibrosis.

Unlock this article by subscribing to STAT+ and enjoy your first 30 days free!


What is it?

STAT+ is STAT's premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond.

What's included?

  • Daily reporting and analysis
  • The most comprehensive industry coverage from a powerhouse team of reporters
  • Subscriber-only newsletters
  • Daily newsletters to brief you on the most important industry news of the day
  • STAT+ Conversations
  • Weekly opportunities to engage with our reporters and leading industry experts in live video conversations
  • Exclusive industry events
  • Premium access to subscriber-only networking events around the country
  • The best reporters in the industry
  • The most trusted and well-connected newsroom in the health care industry
  • And much more
  • Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr.
  • The X factor that was not analyzed was Bob Beall, former CEO of Cystic Fibrosis Foundation. Bob did more to change the trajectory of care and innovative therapies for CF than anyone has in patient advocacy for any disease. Under his leadership CFF created continuous quality improvement at CF centers, established a therapeutics development network, and funded innovative research. Any disease would be fortunate to have an advocate with the vision and tenacity of Bob.

  • Cystic Fibrosis Foundation has a very successful Venture Philanthropy model which has leveraged their donor dollars and enabled more significant research investment. I’m the CEO of CureDuchenne; since 2004, we’ve also been able to leverage philanthropic donations and multiply our research through successful Venture Philanthropy. A significant measure of a non-profit’s ability to fill the drug development pipeline, is a solid business model. This should be included as a factor in comparing disease outcomes.

Comments are closed.