Virginia Commits $15 Million to Cover Sickle Cell Gene Therapy
Virginia’s 2026 budget includes nearly $15 million over two years to help Medicaid pay for gene therapy treatments for people with sickle cell disease. The funding is structured through a federal payment model designed specifically to help state Medicaid programs afford high-cost cell and gene therapies, allowing Virginia to pay separately for the drug itself and the intensive care required to deliver it.
Sickle cell disease is an inherited blood disorder that causes severe pain and organ damage. The FDA approved two gene therapies for the disease in late 2023. Both can help some patients produce healthier blood cells, but the treatment is not a simple infusion. Patients first undergo consultations, organ function testing, and insurance approval.
Their blood-forming cells are then collected and sent out for processing, which can take months. Once the modified cells return, patients receive several days of chemotherapy before the cells are infused back into the body.
30-40 days Time patients may spend in the hospital during part of the gene therapy process, according to Elizabeth Krieger, director of pediatric stem cell transplantation at Children’s Hospital of Richmond at VCU.
VCU Health in Richmond is currently the only gene therapy site for sickle cell patients in Virginia. Access barriers have long shaped who actually gets this care. Before the Sentara-EVMS full Sickle Cell Program opened in Hampton Roads in October 2024, many patients in the region had to travel to Richmond or North Carolina for specialty treatment. Without that access, they relied on primary care doctors, hematologists unfamiliar with the disease, or local emergency rooms.
The Hampton Roads region has the largest adult sickle cell population in Virginia. Madeeha Deo, medical director at the Sentara-EVMS full Sickle Cell Program, estimates between 800 and 1,200 adults in the region live with the disease. The clinic now serves more than 200 active adult patients and sees three to five new patients each week.
The new Medicaid funding does not guarantee every eligible patient will receive gene therapy. The treatment also requires chemotherapy, which can affect fertility, meaning patients face difficult decisions before starting. Still, providers say the state investment removes a key financial barrier that has kept the treatment out of reach for Medicaid enrollees.
What You Can Do Now
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Call your Virginia state legislators at (804) 698-1500 and ask them to confirm the $15 million sickle cell funding is protected in any future budget amendments. Medicaid line items can be cut in mid-session corrections.
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Contact the Virginia Department of Medical Assistance Services (DMAS) at (804) 786-7933 and ask when the cell-and-gene-therapy payment model will be fully operational and which plans will be covered first.
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Reach out to the Sickle Cell Disease Association of America at [email protected] and ask for their current state-by-state Medicaid coverage tracker so you can compare Virginia’s approach to other states.
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Ask your member of Congress to protect the federal cell-and-gene-therapy payment model that Virginia’s funding relies on. Reach the U.S. Capitol switchboard at (202) 224-3121 and tell them cuts to the federal model would unravel state-level access expansions like this one.
Sources
Virginia Mercury: Virginia Budget Expands Medicaid Access to Sickle Cell Gene Therapy FDA: Approvals of Sickle Cell Gene Therapies Casgevy and Lyfgenia, December 2023 KFF: Medicaid Coverage of Cell and Gene Therapies WHRO: Sentara-EVMS Sickle Cell Program Serves Hampton Roads Adults CMS: Cell and Gene Therapy Access Model Overview
[Quote: “They were either seeking care with their primary care doctors or hematologists that may not see a lot of sickle cell patients.
And when they weren’t receiving care at a sickle cell center, they were having to rely on local emergency rooms.”, Madeeha Deo, medical director, Sentara-EVMS full Sickle Cell Program. Virginia Mercury]