Sickle cell disease (SCD), a rare and debilitating blood disorder that, in the U.S., predominantly affects Black and African Americans, has historically been neglected by research funding—but hopefully, that’s changing.
There has long been a disparity in the “lack of investment in research funding,” Dr. Ted Love, CEO of Global Blood Therapeutics (GBT), told us. For example, in 2011, cystic fibrosis received about 440 times as much national foundation research funding per patient, and federal and private funding disparities have continued.
Proclaiming September Sickle Cell Awareness Month,President Biden calls for efforts to counter neglect caused by “systemic inequities in our health care system.”
And funding is growing: The Gates Foundation announced $100 million for SCD research in 2019, and the NIH Cure Sickle Cell Initiative gave $534 million in 2020-2021. Currently, 894 clinical trials for SCD therapeutics are underway.
Research is paying off, with breakthroughs like the first FDA-approved drug that attacks the underlying cause of sickle cell disease, developed by GBT. The company, which Pfizer is purchasing, recently had favorable FDA designations for two next-gen therapies in trials; bluebird bio and Vertex have drugs in the pipeline, too.
Congressional action: The Sickle Cell Disease Treatment Centers Act introduced last week proposes a $535 million annual grant for SCD care at community health and outpatient centers “so patients can access care and other services closer to their homes.” Dr. Love praised the bill as “a significant step toward equitable access for the sickle cell community.”
Find out more.
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