The crucial Sickle Cell Data Collection program is in jeopardy

Originally posted by STAT News

The crucial Sickle Cell Data Collection program is in jeopardy
SCDC helps increase access to care — but HHS cuts threaten it

In December 2023, a groundbreaking announcement grabbed headlines: After years of anticipation, the Food and Drug Administration approved the first gene therapies for treating sickle cell disease, offering hope of eliminating life-altering symptoms.

News at the time also featured the treatment’s prohibitive cost — between $2 and $3 million per person. But many stories didn’t mention another fact: For many Americans with this condition, life-changing medications that cost just a few dollars a week remained — and remain — inaccessible. Never mind the million-dollar gene therapy.

We know about gaps in care because of efforts like the Sickle Cell Data Collection program, which my team and I at the University of Michigan participate in. It collects crucial data to help increase access to care for people with sickle cell disease.

The SCDC program is funded by the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention. Unfortunately, this division was eliminated as part of the Department of Health and Human Services Reduction in Force in April, putting the future of SCDC in serious jeopardy. Without the SCDC program, efforts to improve access to health care for people with sickle cell disease risk falling short, leading to greater burdens and higher costs for families and health care systems.

Sickle cell disease, discovered more than 100 years ago, is the most common inherited blood disorder in the United States. It affects about 100,000 Americans, most of whom are Black or Hispanic. Sickle cell disease is a medically complex condition, with people often experiencing severe pain and an increased risk of complications such as strokes and serious infections.

Evidence-based care can reduce these risks. But success depends on consistent access to high-quality health care. Despite decades of recommendations and evidence, the quality of care among people with sickle cell disease is severely lacking.

For example, in many states, fewer than 10% of children with sickle cell disease receive the recommended amount of life-saving antibiotics to prevent infections. Only about one-third undergo screenings for stroke. Less than half of adults with sickle cell disease visit a blood disorder specialist known as a hematologist within a three-year span, even though they should have multiple appointments each year.

Approximately 80% of people with sickle cell disease are insured by Medicaid. So when they don’t get appropriate preventive care, the bill for emergency care and costly treatments for strokes and infections is passed along to insurers and state and federal agencies — and ultimately, the public.

The CDC created the SCDC program a decade ago to identify opportunities to close gaps in access to care. From the start, SCDC has continued to garner bipartisan support in both the Senate and the House. Sixteen states have now established SCDC programs to collect and track trends in diagnosis, treatment, and access to care.

The 16 programs have analyzed data from many different sources to establish where people with sickle cell disease live, guide efforts to improve the transition from pediatric to adult care, and track gaps in immunizations for children and adults.

My team at Michigan has forged a strong partnership with the state government through the Michigan Department of Health and Human Services. Together, we’ve played a key role in developing and evaluating policies and programs that aim to improve the lives of the 4,000 Michiganders with sickle cell disease.

For example, data from the Michigan SCDC program supported the expansion of state-provided health benefits to adults with sickle cell disease, instead of being cut off at age 21. Hundreds of Michiganders have now enrolled in a program that provides essential health services, thanks to strategic data use and collaboration between agencies.

Data from the Michigan SCDC program also helps monitor important aspects of quality of care. Sickle cell clinics and the state use this information to create plans and projects aimed at improving the care quality among this population — and therefore, to spend state dollars most wisely.

SCDC data has been vital in other states, providing evidence that helped win millions in state funding to improve care in North Carolina, Colorado, and Indiana.

In North Carolina, SCDC was also instrumental in ensuring newborns who screened positive at birth for sickle cell trait received early connections to essential preventive services. In California, SCDC data led to the creation of 12 new adult clinics for people with sickle cell disease. Georgia’s SCDC program improved access to care by training providers, increasing their confidence in treating individuals with sickle cell disease.

And those are just the first wins. Other states could use SCDC data to establish methods and standards for their sickle cell disease programs, and to guide and train future public health leaders.

But the SCDC program goes beyond just collecting data in every state. It creates a unique opportunity to connect people. Each state convenes a diverse group of partners that includes people with sickle cell disease, parents and other caregivers, health care providers, policymakers, health insurers, public health experts, and researchers.

These key partners work together to exchange insights, guide the use of SCDC data, and spread information about sickle cell disease within their communities. In addition, the voices of patients can be centered when considering programs and policies across the U.S.

This collaboration builds relationships that wouldn’t form naturally, leading to better and more efficient use of resources within states. And when these teams interact across different states, they share knowledge and big ideas, innovating ways to improve the lives of those living with sickle cell disease across the United States.

When people with sickle cell disease receive the care they need and deserve, they can lead healthier and more productive lives and avoid costly health crises. Robust access to care is essential for harnessing the potential of cutting-edge therapies like gene therapy, which promise transformative benefits for this population beyond what the best current care can offer.

Five years ago, a national report on sickle cell disease called for the kind of long-term data gathering, analysis, and sharing effort that SCDC has become. The 16 SCDC programs will reach the end of the second year of their five-year funding period in September. The elimination of the Division of Blood Disorders and Public Health Genomics at the CDC has created substantial uncertainty about what happens after that, as highlighted by concerned senators who champion this program. To cut the program’s funding now would be incredibly short-sighted.

Losing the SCDC program would undermine nearly a decade of collaborative efforts across states to increase access to health care for people with sickle cell disease. The stakes are too high for people living with sickle cell disease and their families.

Sarah Reeves, Ph.D., M.P.H., is an associate professor of pediatrics and epidemiology at the University of Michigan and the principal investigator of the Michigan Sickle Cell Data Collection program.