New Florida law requires sickle cell training for drug prescribers
A new law going into effect requires anyone prescribing any drug in Florida to get certified training on sickle cell treatment.
"It's accountability," Andrea Hall, the Executive Director of Shak's Hope Foundation, said. "It's what's important."
Hall's daughter Shakira, 30, died from the disease 10 years ago. Since then, Hall has led a foundation offering support to people battling sickle cell.
"Unfortunately, individuals with sickle cell disease report bias and stigma when it comes to the health care system," said Dr. Foluso Joy Ogunsile, the Medical Director for Memorial Healthcare System's Sickle Cell Medical Home.
The genetic blood disease can feel like shards of glass racing through veins, attacking every organ, Ogunsile said. Life expectancies for patients are 20 years less than those of others, she said, and 90% of people with the disease are Black, according to the Centers for Disease Control.
A New England Journal of Medicine article published in November 2020 said, "too often patients combat unbearable pain and racist attitudes. Patients are often described as drug seekers and accused of feigning their pain.
"It gets us to the point where, to be honest with you, it makes you almost scared to go to the hospital," Josiah Frierson, a sickle cell survivor, said during testimony before the Florida House Health Professions and Programs Subcommittee in February.
He is one of several people with the disease from Miami whom the Advancing Sickle Cell Advocacy Project sent to Tallahassee to push lawmakers to pass a bill District 104 Rep. Felicia Robinson and others worked to get signed into law.
"We were talking about having more centers like we're in now," she said of Memorial Healthcare System's sickle cell home.
Ogunsile's team and lawmakers helped convince Florida's medical association to require a two-hour training, Robinson said.
It is personal for Hall. She hopes patients find more clinics with supportive care.
"A space that somebody is compassionate with you, that they don't form judgment," Hall said. "They don't always assume that you're drug seeking. They're not looking at you negatively. They greet you with compassion. That's everything to somebody that lives with pain."
