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Sickle cell bill on its way to governor

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The Florida Legislature on Thursday gave the nod to a bill that would allow research in sickle cell disease to be eligible for Closing the Gap Grant Program.

The bill, SB 94, was passed by the House on Thursday by a unanimous vote. It passed the Senate unanimously, also. Sickle cell is a genetic inherited blood disorder. An estimated 2 million Americans have sickle cell disease and people at risk of inheriting it descend from Africa, India and the Mediterranean as well as South and Central America, the Caribbean and the Middle East.

Closing the Gap grants are administered by the Florida Department of Health, which last year was allocated $3.1 million for the program. Seventeen grants were awarded, according to the bill analysis. Projects receiving grants are required to be matched by local funds. The local community must match $1 for every $3 of grant money provided. A portion of the required matching funds may be in-kind contributions in the form of free services or human resources.

The bill, SB 94, is sponsored by state Sen. Arthenia Joyner and in the House was championed by state Rep. Bobby Powell. Powell told members of the House that Dameneka Afrika, the 2013-2015 sickle cell poster child of West Palm Beach County and Treasure Coast, said the disease left her feeling as though there were “a bunch of people with little nails hammering on  her skin constantly.”

Powell said adding sickle cell to the list of diseases and conditions eligible for a Closing the Gap Grant would help “eliminate, eradicate, facilitate and educate people about the sickle cell disease and eventually, at some point, we will be able to end this in the state of Florida.”

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