When it comes to sickle cell disease, too many Black families already know what it means to navigate a healthcare system that overlooks their pain, delays their treatment, or fails to see their lives as a priority. In Michigan, where thousands of residents live with this inherited blood disorder, there has finally been a coordinated effort to track their experiences, connect the dots, and fight for better care. That fight now faces a new threat—one not caused by a virus, but by politics.
The Trump administration has gutted the Centers for Disease Control and Prevention’s Division of Blood Disorders, a move that has thrown the future of Michigan’s sickle cell disease registry into uncertainty. This is not just a matter of bureaucracy. This is about lives. This is about a system that already gives Black pain the short end of the stethoscope now potentially pulling the plug on the very data needed to hold it accountable.
Since 2020, the Michigan Sickle Cell Data Collection Program—born from a collaboration between the University of Michigan and the Michigan Department of Health and Human Services—has served as a lifeline for understanding how the disease affects an estimated 4,000 Michigan residents. Led by University of Michigan professor Sarah Reeves, the team has worked to map out the who, where, and how of sickle cell care in the state. Their goal is clear: gather the data to close the care gap, inform intervention, and improve quality of life for people long pushed to the margins of public health conversations.
“Our overall objective is to use data to identify ways to improve the lives of people living with sickle cell disease,” Reeves said. “We’re one of 16 states that are funded to do this sickle cell data collection effort by the CDC.”
Reeves and her team have been doing the unglamorous but necessary work. They’ve tracked where patients live, how often they end up in hospitals, and what treatments they’re accessing—or being denied. This registry isn’t just about numbers. It’s about what the numbers say when the country finally decides to look at them. It’s the kind of groundwork that brings policy into the exam room, that forces equity into clinical care, that holds power accountable through facts.
And now, it might stop.
Reeves said the silence came like a punch. “On April 1, our team received some dismaying news—the CDC’s Division of Blood Disorders, which supported our work, had been ‘essentially eliminated,’ leaving the project in a state of limbo.”
That division had been responsible for funding 16 states, including Michigan, to build out data collection specific to sickle cell disease. This wasn’t charity. This was infrastructure. This was public health doing what it’s supposed to do—finally recognizing that some communities need more because they’ve historically received less.
“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 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.”
The silence from the federal level is deafening. No roadmap. No plan. No explanation. For Reeves and her team, that kind of limbo feels like sabotage. For the Black families depending on this data to shape future care, it feels like abandonment.
This registry is not an academic exercise. It is a tool. It’s how Michigan identifies where access to care is breaking down. It’s how the state tracks who’s getting antibiotics and who isn’t, who has access to gene therapies and who’s being left behind. It’s the kind of data that shifts outcomes, shapes budgets, informs legislation.
“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 explained. “And that goes all the way from lifesaving antibiotics to the new gene therapies.”
To understand the impact of this decision, you have to understand what sickle cell disease actually is. It’s a painful, chronic, and life-altering condition that distorts red blood cells into a sickle shape, blocking blood flow and causing severe pain, strokes, and organ damage. It’s also a disease that overwhelmingly affects Black people in the U.S. According to the CDC, about 1 in 365 Black babies are born with it. Yet for decades, sickle cell received only a fraction of the funding and attention directed toward other genetic diseases.
This isn’t just medical neglect. It’s racialized neglect. And the CDC’s recent decision compounds that legacy.
Reeves and her team continue to work, but she admits the climate has changed. Morale is under pressure. Uncertainty looms. “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.”
What does it say that just as gene therapy is making new treatment options possible—treatment that could transform lives—data collection is being derailed? How do we move forward when the very programs designed to track and address inequities are being stripped away?
This isn’t just about science. It’s about power. It’s about whether Black health remains a priority after the press conferences end. Whether the state will step up where the federal government steps back. Whether community-driven care will get the support it needs to thrive.
Michigan’s sickle cell community deserves more than spreadsheets sitting in storage. They deserve systems that work, data that drives action, and leaders who won’t flinch when federal support disappears.
This moment calls for a response grounded in truth and fueled by urgency. Reeves and her team have built the structure. They’ve made the case. Now the question becomes: Who is listening?
If the state fails to act and this registry disappears, so does a critical tool for health equity. So does a chance to fix a system that’s been broken longer than many of these patients have been alive. These decisions ripple. They always do. One cut at the CDC has the power to silence entire communities’ stories, erase their data, and stop progress in its tracks.
The story of sickle cell disease in Michigan has always been one of resilience. Black families have advocated, organized, and cared for each other when systems looked the other way. This program has finally given those stories a place to be seen. It gave them structure, legitimacy, and a path forward.
To lose it now—just when the research is hitting its stride—would be more than disappointing. It would be a failure.
And that failure would not be on the people living with sickle cell disease. It would be on every institution that watched the floor fall out and chose not to build a bridge.
There is still time for leadership to show up. For the state to find a way to fund what the federal government will not. For universities, hospitals, health departments, and communities to rally around what this data truly represents.
Because this isn’t just about records. It’s about rights. It’s about ensuring that those who have been historically underserved are not chronically unseen.
The registry may be in limbo, but the lives it represents are not. They are very much here. They are raising children, working jobs, advocating for themselves, and surviving in spite of a system that keeps asking them to prove their worth.
Michigan has an opportunity to act. The question is whether it will.
Because communities living with sickle cell disease already know what it’s like to be left out of the conversation. They’re waiting to see who will fight to keep them in it.
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