New legislation targets sickle cell disease

FSU student John Lewis enjoying a day in Los Angeles. Photo courtesy: John Lewis Instagram

House Bill 247, the Sickle Cell Program, was filed on Jan. 19 by Rep. Daryl Campbell, (D-Fort Lauderdale).

The bill would  require Florida’s Department of Health to establish a grant program for the prevention, care and treatment of sickle cell disease and for educational programs. There is no accompanying bill in the Senate. As of Jan. 25, it was in a Healthcare Regulation Subcommittee. The bill will also show a sickle cell disease registry, provide funding for patient education and outreach, and require healthcare providers to receive training on diagnosing and treating sickle cell disease.

John Lewis is a full-time student at Florida State University. He says that he was diagnosed with sickle cell disease as a child, and it has been a big part of his life.

Despite this, he says that he has learned to manage it with the help of his healthcare team and by staying organized.

“As someone who has lived with the disease, I understand the importance of access to care and support, and this bill will make a huge difference for many people like me,” Lewis said.

Improving service coordination for sickle cell patients is another essential goal of the legislation.

According to WebMed, about 100,000 people in the United States have sickle cell disease. Most of them are African Americans. HB 247 offers an all-encompassing solution to the problems faced by people with sickle cell disease. The bill aims to enhance the health outcomes and quality of life of persons afflicted by the condition by increasing access to treatment and better-coordinated services. The measure would greatly benefit individuals in their position.

Michelle Morgan, a healthcare provider taking care of patients with sickle cell disease, can’t do it alone. She says patients in Florida who suffer from sickle cell anemia face significant barriers to treatment due to a shortage of specialist facilities.

“There is a need for more medical professionals who specialize in treating sickle cell disease. Therefore, many patients must travel vast distances to get care. Developing a dedicated clinic and mandatory education for medical professionals will resolve these issues,”

Morgan said.

In addition, the high price of medication means that many people with sickle cell disease struggle financially. Fortunately, the bill includes provisions to provide patient education and outreach financing, which will go a long way toward solving the problem.

Morgan said that improving service coordination for people with sickle cell illness is another important goal of HB247.

“The appropriate care is provided at the right time by establishing a centralized database of healthcare providers and treatment choices and adopting a coordinated care paradigm,” according to the bill’s language.

The bill aims to fund research and treatment, establish a clinic for sickle cell disease at a public hospital, establish a register for the condition, and call for healthcare professionals to undergo training in identifying and treating the illness.