Gov. DeSantis signs bill creating grant program for sickle cell disease research, treatment

Sickle cell anemia, 3D illustration showing blood vessel with normal and deformated crescent-like red blood cells
Sickle cell disease is the most common inherited blood disorder in the United States.

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.

Jesse Scheckner

Jesse Scheckner has covered South Florida with a focus on Miami-Dade County since 2012. His work has been recognized by the Hearst Foundation, Society of Professional Journalists, Florida Society of News Editors, Florida MMA Awards and Miami New Times. Email him at [email protected] and follow him on Twitter @JesseScheckner.


  • Forever happy

    June 2, 2024 at 12:23 pm

    Will this include gay or transgender?? Just asking

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      June 2, 2024 at 1:50 pm

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  • Jojo

    June 2, 2024 at 12:53 pm

    Can we say pandering to the black vote?

    • Dick Whitaker

      June 3, 2024 at 4:56 am

      Pandering to the black vote is something you Demos always say when a Repub reaches out. You also call Repub black politicians “Uncle Tom’s”. Now I always get a kick out of watching white Demo politicians put on their Black Folk gospel revival voices thinking they are Jeremiah Wright. You crackers crack me up with your pandering.

      • Dick Whitaker

        June 3, 2024 at 5:29 am

        At the NAACP Convention. Al Gore, Hillary Clinton are a few memorable ones over the years, and I can’t wait to hear Slo Joe take a shot at it. How will that be displayed on the teleprompter?

  • rick whitaker

    June 2, 2024 at 1:31 pm

    since florida is #1 in sickle cell cases, that makes sense. desantis is of course late in doing anything about it. ny and tx are 2 and 3. florida is going to put up 10 million, in new york, which has less cases than florida, the national lung heart society just put up 15.6 million on top of what the state of ny put up. so, florida has more cases, but spends less on research by a long shot than the #2 state. yeah, ron desantis really cares.

    • Impeach Biden

      June 3, 2024 at 6:51 am

      Come on Kanye / Whittaker say it. “Ron DeSantis doesn’t like black people.” Memories of Hurricane Katrina 2005. That was a dumb statement then and it is now.

      • rick whitaker

        June 3, 2024 at 8:09 pm

        HOWLER MONKEY, no,i wasn’t making any racist statement at all. i was making a statement about a medical issue using published facts. my point was, desantis is a bad governor. why does everyone have to explain things to you most of the times???

        • Jenna

          June 4, 2024 at 5:48 am

          This new law was drafted by the top Democrat in the Florida House, House Minority Leader Fentrice Driskell, also chair of the House Black Caucus. It passed the state legislature unanimously. Though Governor DeSantis signed it into law, a Black female lawmaker drafted it and lobbied her colleagues. She was successful, and it passed unanimously. If you have criticism for this new law, reserve it for the law’s primary sponsor. Is everyone here as ill-informed and racist as this poster?

          • rick whitaker

            June 5, 2024 at 12:59 pm

            JENNA, i love the new law, i just think it’s not enough money, soon enough. i guess the impeach biden/ howler monkey is the character you were referring to as racist and ill- informed. if so, you are obviously right.

    • Tony McRae

      June 4, 2024 at 5:39 am

      This new law, along with the appropriated tax dollars to fund it, was drafted and sponsored by the top Democrat in the Florida House of Representatives and the chair of the House Black Caucus. It passed the Legislature unanimously. If you want to criticize the new law, reserve your criticism for House Minority Leader Fentrice Driskell, not Governor Ron DeSantis, who did the right thing by signing it into law. Yet, maybe, just maybe, learn about something first before criticizing it. Talk about someone who has diarrhea of the mouth and constipation of the brain. Is everyone on this website as uninformed and ignorant and, yes, racist as this white man?

  • Kimples

    June 6, 2024 at 1:08 pm

    NOT ENOUGH MONEY, especially for gene therapy to cure sickle cell!

Comments are closed.


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