Uncertain Future Looms for Michigan’s Sickle Cell Registry Amid CDC Funding Cuts
The future of Michigan’s sickle cell disease registry hangs in the balance following funding cuts by the Trump administration at the U.S. Centers for Disease Control and Prevention (CDC). The cuts have placed the registry, a crucial resource for understanding and treating the disease, in jeopardy.
The Michigan Sickle Cell Data Collection Program is a collaborative effort between the University of Michigan and the Michigan Department of Health and Human Services. Since its inception in 2020, the program has been gathering data on approximately 4,000 residents with sickle cell disease, a genetic disorder that primarily affects Black individuals and has historically lacked comprehensive research.
Sarah Reeves, a University of Michigan professor leading the research initiative, emphasized the program’s mission: “Our overall objective is to use data to identify ways to improve the lives of people living with sickle cell disease.” Michigan is one of 16 states participating in the CDC-funded effort to collect data on this condition.
The program aims to map out the demographic distribution of individuals with sickle cell disease in Michigan and analyze their healthcare needs and usage. This data-driven approach is intended to pinpoint areas for intervention to enhance patients’ quality of life and healthcare outcomes.
However, the program’s continuity was thrown into question when, on April 1, Reeves and her team learned that the CDC’s Division of Blood Disorders, which supported their work, had been “essentially eliminated.” Reeves reported significant confusion and uncertainty, stating, “Across all 16 states, we have not received communication from the CDC about what this means in terms of our funding, [and] what this means in terms of our program. We are 18 months into a five-year cooperative agreement, and we have no idea what happens at the end of September of this year.”
Despite the uncertainty, the team has continued its efforts, though Reeves expressed serious concerns about the project’s future. “One of our biggest goals is to identify areas to increase access to care, and ways that we can help people with sickle-cell disease get the high-quality care that they need and deserve,” she explained. This includes access to lifesaving antibiotics and new gene therapies.
The looming threat of discontinuation is troubling for those involved, as Reeves noted, “We’re so worried about what this means in terms of being able to continue to lay the infrastructure to improve the lives of people with sickle cell disease. That’s really what is at the core of this.”
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