Washtenaw County sickle cell disease researchers and activists see promise in gene therapy, threats in federal funding cuts

For decades, many Washtenaw County residents living with sickle cell disease (SCD) – mostly but not exclusively people of African descent – have endured painful crises, repeated hospitalizations, and a lifetime of uncertainty.

Now, as gene therapies become a reality and data-driven research expands, the SCD community here stands at a crossroads: hope for a cure balanced by a fight for fairness, funding, and dignity, beginning at the hospital door. SCD is an inherited disorder that causes normally disc-shaped red blood cells to be crescent- (or sickle-) shaped, resulting in intense episodes of pain, as well as complications like stroke, lung and eye problems, infections, and kidney disease. Black people are at much higher risk than others for the genetic mutation that causes SCD.

At the University of Michigan (U-M), Dr. Sarah L. Reeves, epidemiologist and associate professor, leads the state’s most comprehensive surveillance system for SCD. Her work through the Michigan Sickle Cell Data Collection Program (MiSCDC) links health records to reveal who in Michigan has SCD, where they live, and how they access or struggle to access care.

“There are about 4,000 individuals living with sickle cell disease in Michigan,” Reeves says. “Locally, in Washtenaw County, there are only 107 individuals living with sickle cell disease.”

She explains that MiSCDC’s mission is more than statistical. Overall, it’s about accountability and progress. 

“The MiSCDC program is a data system that works to count everybody with sickle cell disease in the state and then understand what their health care utilization patterns are over time,” Reeves says. “That is very specifically so that we can develop and influence programs and policies to help fill the gaps in access to care for people with sickle cell disease.”

Her team is now interviewing families and providers to uncover what prevents those living with SCD from getting “the right care at the right time.” Transportation, she notes, remains a stubborn barrier.

“There is a lot of difficulty getting access to transportation to get to appointments. Even though there are low-cost options, sometimes they are hard to get,” Reeves said.

Nationally, the treatment landscape for SCD has shifted dramatically. For the first time in history, curative gene and cell-based therapies are now approved for use in the United States, offering the potential for long-term remission or cure.

According to Dr. Wanda Whitten-Shurney, CEO and medical director of the Sickle Cell Disease Association of America’s Michigan Chapter, these breakthroughs are both historic and humbling.

“30% of adults living with sickle cell disease have pain every day,” she says. “The most recent advances in treatment have been development of transformative therapies, not curative therapies. We don’t have long-term follow-up and we don’t know all of the potential risks and benefits of these newly introduced treatment options.”

For families like Davinna Christian’s, that reality is personal. Christian’s son, Dushon “Shon” Sharp Jr., lives with SCD and complications from multiple childhood strokes. He is a patient at U-M.

“Overall, I am happy with the care that Dushon receives at the University of Michigan,” Christian says. “However, there are some bumps if you are living with sickle cell disease that have complications.”

When Dushon transitioned to U-M as an adult, he missed six scheduled transfusions due to complications accessing veins.

“We were told that a vascular team was supposed to be the best and they were able to access those who have hard access to veins but quite a few were not able to,” Christian says. “In my opinion, it was not because they couldn’t but because there was a lack of them putting the effort into getting the job done.”

Despite setbacks, Christian appreciates the flexibility of U-M’s transfusion clinic.

“What I do like is the availability U-M has as far as opening hours for sickle cell warriors who are on chronic transfusions. You can go on weekends and holidays,” Christian says. Just this past week, Dushon had an appointment on Sunday, which was convenient for the family.

Dr. Jennifer Jones, a clinical assistant professor in transfusion medicine and classical hematology at U-M, says the landscape of SCD care is rapidly evolving.

“Organizationally, we’ve had the development and formation of the National Alliance of Sickle Cell Centers, which is a sickle cell-specific national organization whose mission is to create more sickle cell experts and ensure that care rendered to our warriors is evidence-based and guideline-driven,” Jones says.

But she also warns that remarkable new treatments bring complex logistical challenges.

“Those amazing technologies that give a new license on life to many of our warriors also come with a number of challenges of adopting them into health care systems,” she says.

Cost, Jones adds, is one of the most pressing barriers.

“In the state of Michigan, we have a couple of health care systems, including the University of Michigan, who are approved sites to do therapy, but the administrative burden and permission required to perform the therapy because of cost have been a barrier,” she says. “However, we do have the backing of the state of Michigan government. … This is a top priority at Michigan Medicine. So, warriors, stay tuned.”

Behind these local efforts looms a national concern: research funding. Under President Donald Trump’s administration, the National Institutes of Health (NIH) faced budget cuts exceeding $1 billion in 2025 alone, and more NIH budget cuts are proposed. $5 billion in cuts are also proposed for the Centers for Disease Control and Prevention (CDC), and the CDC division that funds MiSCDC and other SCDC programs across the country was eliminated in April. For programs like MiSCDC, which depends on CDC funding, these reductions posed existential threats.

The possibility of losing support has created confusion and worry. Without stable data infrastructure, it becomes nearly impossible to track treatment outcomes, evaluate therapies, or shape policy. Fortunately, days before MiSCDC’s CDC funding was set to lapse this year, it was funded through September 2026. Data collection in Michigan continues.

Reeves says several key findings have emerged from MiSCDC’s work:

• Preventive care remains inconsistent. Many children and adults with SCD still aren’t receiving recommended therapies or screenings.
• Treatment eligibility is expanding. Gene- and cell-based therapies are approved but remain limited in reach.
• Equity gaps persist. SCD primarily affects Black Americans, yet historically has received far less funding than comparable diseases.
• Data saves lives. Programs like MiSCDC expose disparities that might otherwise remain invisible, guiding policy and outreach.

Meanwhile, local activists, supporters and families are turning awareness into action. Ypsilanti hosts an annual World Sickle Cell Day Walk during Juneteenth celebrations, while Ann Arbor holds events like the Strides for Sickle Cell 5K Run/Walk to raise funds and visibility.

Community organizers visit churches, schools, and community centers to teach not only what SCD is but what’s now possible. Advocates are also engaging Lansing lawmakers to ensure Michigan Medicaid and private insurers cover gene therapies equitably once they become widely available.

At the University of Michigan Pediatric Sickle Cell Program, clinicians coordinate hydroxyurea therapy, annual transcranial Doppler screenings to prevent strokes, and family education sessions. The Pediatric Sickle Cell Improvement Program partners with Medicaid to improve preventive-care compliance, reducing hospitalizations and improving school attendance.

Still, daily challenges persist for SCD patients. Access to reliable transportation, safe housing, and job flexibility often determine health outcomes as much as medical innovation. The Washtenaw County Health Department is now integrating SCD education into broader community health initiatives, which helps to ensure schools, social workers, and the entire community understand the disease’s complexities.

As 2025 draws to a close, Washtenaw County’s sickle cell warriors continue to live with both the weight of history and the light of new possibility.

In a state that once measured SCD progress in small steps, gene therapy represents a giant leap, if everyone can reach it.

“The cure is here,” says one Ypsilanti resident who lives with SCD, who asked not to be named in this article to protect their privacy. “But it’s not enough to have it sitting on a shelf. We need it in our communities.”