The Centers for Disease Control and Prevention has eliminated its Division of Blood Disorders and Public Health Genomics, putting the future of a critical federal program for Floridians with sickle cell in jeopardy.
The Sickle Cell Data Collection (SCDC) program, active in 16 states including Florida, is the nation's only federally funded initiative tracking long-term data on people living with the disease. Florida has one of the highest numbers of sickle cell diagnoses in the country.
But on April 1, all CDC staff overseeing the program were terminated or placed on administrative leave — just months before the program entered its third year of a five-year funding cycle.
Sickle cell disease is an inherited blood disorder that distorts red blood cells into a crescent shape, reducing oxygen flow and causing serious health complications. It primarily affects people of African descent in the United States.
Advocates, researchers and patients warn that eliminating the program could severely affect clinical research, health equity and access to lifesaving treatment.
"This division oversees essential programs relied on by individuals living with blood disorders, like sickle cell disease, and could have severe consequences if eliminated," U.S. Sen. Cory Booker wrote in a May 16 letter to Health and Human Services Secretary Robert F. Kennedy Jr.
More than 95 national and state advocacy organizations have also sent letters to federal leadership urging a reversal of the decision.
What's at risk?
In Orlando, Carla Lewis has seen firsthand what's at stake. She founded the Kids Conquering Sickle Cell Disease Foundation in 2004 after her son was diagnosed and she struggled to find community support.
"The reason why the SCDC is so important is because it provides something that those with sickle cell disease require: surveillance," she said.
While an estimated 100,000 Americans live with sickle cell disease, that figure is based on outdated data, explained Lewis. Program surveillance helps researchers and doctors track patient outcomes, and inform clinical trials, health care policy, and experimental treatments such as gene therapy and stem cell transplants.
It's that kind of infrastructure that saved Hanif Mouehla's life.
At age 8, Mouehla nearly died from acute chest syndrome, a serious complication of sickle cell disease. After surviving, he joined a clinical trial and received a stem cell transplant at New York's Westchester Medical Center, becoming part of the patient data the program helps collect.
As a high school senior, he returned to conduct research in the same pediatrics department and ultimately published a paper with the American Society of Hematology.
"I turned the pain that I was experiencing as a child and as a young teen into passion for patient advocacy, research and volunteering," he said.
Now, as a budding researcher, Mouehla said watching the program lose its staff is not just disappointing — it's concerning.
"You want to see how something like that could impact clinical research in the future, and I'm going to be candid, gravely," he said.
The shutdown has also concerned those living with the disease. University of Central Florida junior Ezinaye Ibiam, who has sickle cell disease, was shocked to learn the program could be eliminated.
"Learning about any disease at all is how we cope with it, to control it, to treat it," she said. "The elimination of that resource will mean a lot of people don't get to get better because we don't have that research that is trying to fight for us."
The SCDC plays a dual role — analyzing patient outcomes while also helping to shape state and federal health policy. Without that infrastructure, advocates say, the future of care for sickle cell patients becomes much less certain.
"Think of the child, the new child that is born with sickle cell," Lewis said. "Their future depends on research. Their future depends on wanting to live a normal life, because it takes treatments and it takes resources and support in order to live with such a devastating disease that affects not only the patient, but families."
Impact 'beyond the present moment'
For researchers like Mouehla, the concern goes beyond individual stories — it's about the future of scientific discovery. He said his own study relied on patient data dating to 2012. Without access to that kind of long-term data, many trials would not be possible.
"If I was unable to get the patient data from patients back then, how am I supposed to be able to have long-term follow-up research be done?" he asked. "I'm not going to sit here and make up numbers and data."
He said that kind of research enables future doctors to develop better, more effective treatment plans. Without the data, those doctors will be forced to start from scratch.
Ibiam said it feels like another setback in a decades-long fight for visibility and health equity.
"It's important that we're moving forward and that we're not moving backward," she said. "I don't see how this elimination can help the American people. I don't see how it can benefit anyone."
Lewis agreed, saying the impact of losing the program could stretch far beyond the present moment.
"It is very disappointing and very heartbreaking to know that such hard work will have to be really championed again by advocates to try to get this back in place," she said. "And by then, we've lost time, and we've lost a lot of resources that could be helpful to the community."
As of August, more than 450 CDC employees had been rehired since the agency's internal reorganization in April. But none from the Division of Blood Disorders and Public Health Genomics — and in turn the Sickle Cell Data Collection program — have been reinstated.
Advocates continue to call for transparency and action. So far, no public federal response has been issued.
"We need this surveillance for our future — for sickle cell warriors that are coming — and to continue research that is vital to the community," Lewis said.
Mouehla said the consequences of eliminating the program could ripple far beyond the sickle cell community.
"How are we possibly going to be able to administer the best quality of care not only for sickle cell disease patients, but for lower-income, marginalized community patients as a whole, if we aren't able to have the framework necessary from these invaluable programs?"
Without long-term data infrastructure and sustained federal support, advocates warn, future treatments could be delayed, research efforts could stall — and the patients who most need progress may be left behind.
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