Opinion

Federal health care cuts threaten sickle cell disease progress in Georgia

Major cuts in grant funding are on the block and scientists are worried these cuts will seriously undermine treatment of and research into rare diseases, such as SCD.
In this 2014 file photo, a 6-year-old Antwon Thornton works on a math worksheet while receiving a transfusion at Children’s Healthcare of Atlanta at Hughes Spalding. Thornton, who suffers from sickle cell disease, had his first stroke just before his second birthday. (Brant Sanderlin/AJC)
In this 2014 file photo, a 6-year-old Antwon Thornton works on a math worksheet while receiving a transfusion at Children’s Healthcare of Atlanta at Hughes Spalding. Thornton, who suffers from sickle cell disease, had his first stroke just before his second birthday. (Brant Sanderlin/AJC)
By Tabatha McGee
8 hours ago

If you know someone battling sickle cell disease, then you know why they’re called warriors. The illness, known as SCD, is debilitating, the pain incapacitating.

The inherited blood disorders, in the worst cases, can cause early death. And those living with the disease face a range of risks, including organ damage, stroke and pain crises.

That’s because the red blood cells are malformed in those with SCD, shaped like a sickle or a crescent moon. They don’t move through the body as easily as round red blood cells. Since these malformed cells are also rigid and sticky, they have a harder time moving through blood vessels, which is what can make these warriors so sick.

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As the executive director of the Sickle Cell Foundation of Georgia, I’ve seen the pain and suffering from SCD firsthand. It’s a truly awful illness that affects children and, by extension, their families and siblings. I’ve seen what it can do to seemingly healthy adults.

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In the United States, more than 100,000 Americans have the disease. The National Institutes of Health estimates that 1 in every 365 Black babies is born with SCD and 1 in every 16,300 Hispanic American babies. And, while rare, white people have it, too. The numbers are significantly greater worldwide, where experts estimate some 20 million people have the illness.

Tabatha McGee. (Courtesy)

Credit: hand

Tabatha McGee. (Courtesy)

Congress recently passed President Donald Trump’s 2026 budget proposal, which drastically reduces public health spending next year, including funding for disease research. And while budgets do not become law, they do act as an agenda for White House priorities.

The National Institutes of Health and the Centers for Disease Control and Prevention are already facing billions of dollars in cuts. And Medicaid is losing more than $1 trillion under Trump’s “One Big Beautiful Bill.”

Major cuts in grant funding are on the block, and scientists are worried these cuts will seriously undermine treatment of and research into rare diseases, such as SCD.

Adding to the drastic reductions, the recent restructuring at the Department of Health and Human Services eliminated almost the entire staff at the Atlanta-based CDC’s Division of Blood Disorders and Public Health Genomics. That’s where the only surveillance system for SCD, the Sickle Cell Collection Program, is located, leading to concerns that the data collection on the blood disorder will likely end. The collection of this critical data helps with important policy decisions and treatment approaches.

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The impact on programs in Georgia that fund treatments, research, advocacy and education is unparalleled in recent times. The effects on essential services, such as the ones we provide to warriors through holistic and hematology care at the Sickle Cell Sanctuary Holistic Wellness Center, are potentially devastating.

Already, previously free services at the sanctuary will now have associated costs, which we were forced to implement on June 1, 2025.

Also at risk because of the cuts are studies into promising new gene therapies that have helped in treating SCD and so many other rare diseases.

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On the bright side, at least in Georgia for now, Gov. Brian Kemp recently signed a budget for fiscal year 2026 that includes modest spending increases, including for health care.

The budget adds $324 million for Medicaid and PeachCare, but it also relies on an anticipated $22.4 billion in federal funds to help cover, in part, Medicaid costs and other health programs, according to the Georgia Budget and Policy Institute. With that funding, or at least part of it, in potential jeopardy because of anticipated health spending cuts in the federal budget, some of the programs Georgians rely on could face a rollback.

All of this will affect funding, including grants nonprofits, such as SCFG, need to continue providing care, or we’ll see more sick Americans with higher costs for health care. But there is something you can do about it. Don’t ever lose hope because we’re not powerless. There is hope in every heartbeat.

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There are three things you can do, and any one of them is important and significant. Reach out to your Congress members. Tell them how important and necessary health care, research and treatments are to so many Americans. Tell them not to cut Medicaid and other health programs. Tell them how important research at the CDC and other agencies is for continuing progress on rare diseases.

Another action you can take. Volunteer for a nonprofit like ours, the Sickle Cell Foundation of Georgia. We welcome all the help we can get. And lastly, donate, if you can, at https://www.sicklecellga.org. Nonprofits rely on donors to keep our doors open and to continue working in the community to help make a difference.

Tabatha McGee is a visionary, a leader and a public speaker who, as the executive director of the Sickle Cell Foundation of Georgia, seeks to inspire in her tireless mission of ensuring the highest quality of life and hope for sickle cell warriors and others with life-threatening blood disorders.

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Tabatha McGee

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