Legislation pending in Tallahassee would impose education requirements for medical practitioners that include information on care management, treatments, and pain for people with sickle cell disease.(Getty Images)
In many ways, Shamar Harper is a typical 12-year-old boy living in Miramar. He worries about homework, what he’s going to wear to school, and even the video games he plays.
“But I also worry about going to the hospital, taking my medicine, and the pain that shows up even when I didn’t invite it,” Harper told members of a Senate Health Policy Committee this week.
“I live with sickle cell disease. That means some days, my body feels like it’s running a race I never signed up for. Some days, I wake up already tired before the day even begins. And some days, I miss school, birthday parties, and being outside just playing like the other kids. Sometimes I can’t walk.”
Harper made the trek from South Florida to Tallahassee to testify on behalf of SB 844, a proposal sponsored by Sen. Shevrin Jones, a Democrat from Miami Gardens.
The bill would require physicians and advanced practitioners who are authorized to prescribe controlled substances to take continuing education requirements that include information on care management, treatments, and pain for people with sickle cell disease.
“I want to be honest with you: Sometimes I am afraid of the pain. I’m afraid of how strong it can be. I get scared of what might happen if my body can’t fight it,” Harper told senators. “People call me a warrior. I didn’t choose to be one but I do choose to keep fighting.”
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Sickle cell disease afflicts roughly 100,000 Americans and is the most prevalent inherited blood disorder in the nation, according to the National Heart, Lung, and Blood Institute.
Sickle cell affects hemoglobin, a protein in the red blood cells that oxygenate the body.
Red blood cells are normally disc shaped and easily move through arteries, veins, and capillaries.
In a person with sickle cell disease, the cells are misshaped, resembling more of a crescent, which means they don’t move easily through the body.
Sickle cell disease can be managed but patients can experience strong episodes of pain because of blocked blood flow that forces them to the hospital emergency room.
More than 90% of people with sickle cell disease are non-Hispanic Black or African American and an estimated 3%-9% are Hispanic or Latino.
About one in every 365 Black babies are born with sickle cell disease.
A 2023 Florida Agency for Health Care Administration report on sickle cell showed Florida Medicaid has one of the highest numbers of sickle cell disease patients in the U.S., indicating a disproportionate impact from a national perspective.
And a 2024 follow up-report shows there were 6,654 Medicaid beneficiaries with sickle cell diagnoses between July 1, 2022 and June 30, 2023.
‘Stepping into a ring of fight for my life’
Nevertheless, people with sickle cell disease — and those who help care for them — testified about their struggles managing the health care delivery system and how SB 844 would better their lives.
Forty-seven-year-old Lauderhill resident Anthony Malcolm said he had outlived the initial prognosis and what he called a “death date” given to him after being diagnosed with sickle cell.
He attributed his longevity to his mother, who, he said, often had to push back against the advice of nurses and doctors “who had little education about how to give phenomenal proper care for someone with sickle cell.”
“As I got older, the visits to the hospital felt more like stepping into a ring of fight for my life versus being a sanctuary place to get proper care relief,” he said.
Malcolm survived a brain aneurysm in 2019 and credited the surgeon with saving his life. The doctor’s expertise in sickle cell, he said, stemmed from first-hand experience through a family member.
Malcolm shared a story of his nephew, who also has sickle cell, recently being misdiagnosed in the emergency room and having to wrestle with the fact his sister is “having to battle like my mother did.”
“As we all know, education overrides ignorance,” Malcolm said in support of the legislation.
North Miami resident Kenley LaFrance also testified, telling committee members that sickle cell can lead to organ failure and cause dental problems.
“Too many health care workers are not fully educated on how sickle cell affects the entire body, not just during a pain crisis. When providers don’t understand the disease, patients get delayed care, inconsistent treatment, and unnecessary suffering,” LaFrance said. “This bill is not about blame. It’s just about knowledge. Education leads to faster care. Education protects lives.”
SB 844 cleared the Senate Health Policy Committee unanimously.
Its counterpart, HB 353, hasn’t been heard in the House yet.