Recent Trump administration cuts at the U.S. Centers for Disease Control has thrown the future of Michigan’s sickle cell disease registry into doubt.
The Michigan Sickle Cell Data Collection Program, a collaboration between the University of Michigan and the Michigan Department of Health and Human Services, has been collecting data on the estimated 4,000 Michigan residents who suffer from sickle cell since 2020. Its larger aim is to identify gaps and help coordinate care for patients with the genetic blood disorder, which disproportionately affects Black people and has long suffered from a lack of in-depth research.
“Our overall objective is to use data to identify ways to improve the lives of people living with sickle cell disease,” said Sarah Reeves, a UM professor who leads the research team behind the data collection program. “We're one of 16 states that are funded to do this sickle cell data collection effort by the CDC.
“What we do is, we try to characterize how many people there are living with sickle cell disease in Michigan, where folks are living, and what their healthcare utilization looks like. And we do that in order to try to identify where we can intervene to improve quality of life and health outcomes.”
But Reeves said that on April 1, her team received some dismaying news—the CDC’s Division of Blood Disorders, which supported their work, had been “essentially eliminated,” leaving the project in a state of limbo.
“This has led to significant confusion on our part,” Reeves said. “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 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.”
Reeves said that for now, the team has continued its work. But the uncertainty is taking a toll, and there’s serious concern that the project itself may not continue much longer.
“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,” Reeves said. “And that goes all the way from lifesaving antibiotics to the new gene therapies.
“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.”
