May 19, 2025 Story by: Editor
A recent round of federal budget cuts at the Centers for Disease Control and Prevention (CDC) has put Michigan’s groundbreaking sickle cell data collection program—and the tens of thousands of Black Michiganders who rely on it—at serious risk.
What began as a biostatistical initiative to map disease prevalence and improve care has become a political football, raising alarms among patients, researchers, and advocacy groups about the fate of crucial services and research that address a condition disproportionately affecting Black communities.
Sickle cell disease (SCD) affects about 100,000 people in the United States; more than 90% are non-Hispanic Black or African American, and an estimated 3%–9% are Hispanic or Latin. More than 2 million people in the United States live with sickle cell trait. About 1 in 13 Black babies born in the United States have the trait. Most people living with sickle cell trait have no symptoms and lead normal lives.
Background: CDC’s Division of Blood Disorders Slashed
In early 2025, the Trump administration eliminated the CDC’s Division of Blood Disorders, the unit responsible for funding and overseeing state‐level sickle cell registries—including Michigan’s pioneering program. This division had provided grants to 16 states to collect data on sickle cell disease, enabling public health officials and clinicians to track patient outcomes, identify care gaps, and allocate resources more effectively.
The cut follows wider CDC layoffs: nearly half of the agency’s staff working on developmental disabilities and birth defects were laid off in the same period, underscoring a broader de‐prioritization of programs serving vulnerable populations.
Michigan Sickle Cell Data Collection Program: A Lifeline in Peril
Since its launch in 2020, the Michigan Sickle Cell Data Collection Program (MiSCDC)—a collaboration between the University of Michigan and the Michigan Department of Health and Human Services—has been the only coordinated effort in the state to gather comprehensive data on an estimated 4,000 Michiganders living with sickle cell disease. Led by epidemiologist Dr. Sarah Reeves, MiSCDC has produced reports on emergency department utilization, socio‐demographic trends, and Medicaid coverage, directly informing policy proposals and clinical guidelines.
Dr. Reeves emphasized the program’s impact: “Our overall objective is to use data to identify ways to improve the lives of people living with sickle cell disease,” noting that without CDC funding, the registry’s $500,000 annual budget—and thus its operations—could vanish overnight.
Human Toll: Voices from the Community
For Black families navigating a healthcare system that often overlooks their pain, MiSCDC represented hope. “This data is crucial for us,” said Dr. Wanda Whitten‐Shurney, CEO and medical director of the Sickle Cell Disease Association of America Michigan Chapter. “It helps us locate patients, assess their needs, and advocate for life‐saving interventions”.
Metro Detroit resident Amara Thompson, who was hospitalized twice last year due to vaso‐occlusive crises, underscored the stakes: “When doctors understand my history, I avoid ER mistakes and get proper treatment fast,” she said—pointing out that without data on patient experiences, clinicians revert to guesswork.
National Context: Broader CDC Cuts to Sickle Cell Programs
Michigan is not alone. Advocates in Georgia, Texas, and California have raised similar alarms after learning their state programs could lose federal backing. Outlier Media reported that in Michigan and beyond, the cuts threaten to erase hard‐won data sets and research partnerships that took years to build .
One federal advocate noted the irony: Congress expanded sickle cell research support this spring, even as the CDC dismantled the very division meant to implement those directives.
Implications for Health Equity and Research
Without reliable data, public health officials may struggle to identify hotspots of high emergency department usage or gaps in hydroxyurea therapy—an evidence‐based medication that reduces pain crises and hospitalizations. This data gap risks reversing recent gains in reducing disparities in sickle cell care, particularly in Black communities that already experience higher mortality rates and poorer access to specialized treatment.
Dr. Belinda Avalos, president of the American Society of Hematology, lamented that the cuts “run counter to the administration’s stated goal of addressing chronic disease,” warning they could hamper the rollout of novel gene therapies poised to transform long‐term outcomes for patients.
Next Steps and Calls to Action
Advocates have petitioned U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr. to reinstate the Division of Blood Disorders and restore funding for state registries. Meanwhile, Michigan legislators are exploring state‐level appropriations to fill the looming funding void, and patient groups plan a coalition meeting with MDHHS to chart interim solutions.
“The lives of thousands hang in the balance,” said MiSCDC’s Dr. Reeves. “We must find a way to keep this program alive, or risk losing our ability to fight this disease effectively.”
Sources: CBS News / The Michigan Chronicle / Michigan Public
