Treatment centers that help thousands of Floridians with sickle cell disease could soon get a new funding infusion from the state through legislation Gov. Ron DeSantis just signed.
DeSantis authorized HB 7085, which creates the Sickle Cell Disease Research and Treatment Grant Program within the Florida Department of Health.
Under the program, the department’s Office of Minority Health and Health Equity will provide grants to community-based sickle cell disease treatment and research centers. The money is to pay for therapeutic operations, workforce and workforce development costs.
The measure, effective immediately, also expands Florida’s sickle cell registry, which the Legislature created last year, to enable adults with sickle cell disease to opt into the registry at their discretion.
Florida’s 2024-25 budget, which lawmakers approved March 8, appropriated $10 million from the state’s general revenue fund to the Department of Health for sickle cell treatment, research grants and aid.
HB 7058 requires the Department of Health to:
— Publicize the availability of the grant funds and establish an application process for grant proposals.
— Initiate a call for applications no later than July 15.
— Develop uniform data reporting requirements to evaluate the performance of grant recipients and the improvement of health outcomes.
— Develop a monitoring process to evaluate progress in meeting grant objectives.
— Submit an annual report to the Governor, Senate President, House Speaker and Surgeon General by March 1.
Grant recipients may use no more than 5% of the funds they receive through the program for administrative expenses.
Sickle cell disease is the most common inherited blood disorder in the United States. The condition, marked by defective hemoglobin that inhibits red blood cells from carrying oxygen, affects more than 100,000 people nationwide and 20 million across the globe, according to the National Heart, Lung and Blood Institute.
Most people who have the disease are of African ancestry or identify as Black, though many people who come from Hispanic, Southern European, Middle Eastern or Asian backgrounds also have it.
Roughly 1 in 13 Black of African American babies are born with sickle cell trait, which in most cases does not manifest in symptoms. One in 365 Black or African American babies are born with sickle cell disease.
Complications from sickle cell disease generally worsen as people grow older, and the life expectancy for people with it remains about 22 years shorter than the general population. But treatment has improved markedly over the past few decades.
That includes two cell-based gene therapies the Food And Drug Administration approved since December, though neither has yet reached full market availability. Further, the costs for the gene therapy products, Casgevy and Lyfgenia, are anticipated to be as high as $2 million per patient. It’s also not yet determined whether insurance companies or Medicaid will cover the treatment.
House Minority Leader Fentrice Driskell of Tampa and Boca Raton Democratic Rep. Kelly Skidmore sponsored HB 7085. Doral Republican Sen. Ana Maria Rodriguez and the Senate Appropriations Committee on Health and Human Services sponsored related legislation.
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