In December 2023, a groundbreaking announcement grabbed headlines : After years of anticipation, the Food and Drug Administration approved the first gene therapies for treating sickle cell disease, offering hope of eliminating life-altering symptoms.

News at the time also featured the treatment’s prohibitive cost — between $2 and $3 million per person. But many stories didn’t mention another fact: For many Americans with this condition, life-changing medications that cost just a few dollars a week remained — and remain — inaccessible. Never mind the million-dollar gene therapy.

We know about gaps in care because of efforts like the Sickle Cell Data Collection program, which my team and I at the University of Michigan participate in. It collects crucial data to help increase access to c

See Full Page