Sickle Cell Disease is a significant concern in Florida—with the number of patients in the state far outpacing the national average. Now, new state funding could help advance research and ensure more patients have access to care.
Camille Turner-Bragdon says she didn’t know that she and her husband both carried the sickle cell trait until their son started showing symptoms.
“We didn’t find out until he started to have swelling in his hands at about six months old," she said.
Turner-Bragdon is a mental health counselor at Tallahassee State College. Her son, Kash Bragdon, is now 25. He loves music and sports and has sickle cell disease.
“This causes patients to have excruciating pain in the joints," said his mother, "and it can be anywhere throughout the body.”
Having the trait means a person has one sickle cell gene and one normal one. Having the disease means a person has two sickle cell genes, one from each parent. The disease alters the shape of a person’s red blood cells.
“Which makes them like a half-moon shape, and so they’re pointed on both ends, which makes them hard to move through the blood vessels,” Turner-Bragdon said.
In addition to being extremely painful, sickle cell can also be deadly — cutting a person’s life expectancy by as much as 20 years, according to the Centers for Disease Control and Prevention. Researchers have been working to find new treatments, and Camille Turner-Bragdon says her son Kash was recently able to get a bone marrow transplant.
“They’re doing other experiments now with gene therapy," she said. "But doing the bone marrow transplant is the only known cure for sickle cell disease.”
Kash received the transplant from his brother, who doesn't have the disease or the trait. Kash says the transplant has significantly improved his quality of life.
“So, I have a different kind of energy, and I’ve been just trying to stay active and keep my body on the same level as my energy,” Kash Bragdon said.
Mother and son say more research is needed to help others live longer, better lives with the disease. And this year, Florida lawmakers approved funds to help make that happen.
Tampa Democratic Representative Fentrice Driskell helped champion the cause.
Driskell says she has relatives who carry the trait and family friends who have the disease.
“When you understand more about the disease, you understand just how painful it can be for that patient population," Driskell said. "You understand that they don’t always get the care that they need because people don’t always understand the disease. Sometimes they’re treated like drug addicts because they present with symptoms of pain, and they go for pain relief.”
The latest state budget allocates $3.75 million to support research and care. That includes encouraging autopsies for those who die from the disease -- to get the data to guide further medical developments. Money will also pay for vans at 15 treatment centers across the state to help ensure patients can get access to care.
Driskell says next session she hopes to push for higher rates of reimbursement for providers of Medicaid services, especially specialty care.
