Virginia is backing one of medicine’s most expensive and logistically demanding treatments with real budget dollars. The Commonwealth’s new state budget commits nearly $15 million over the next two years to expand Medicaid coverage of gene therapies for sickle cell disease, plugging Virginia into a federal payment model built to make these high-cost, potentially curative treatments financially workable for state Medicaid programs.
A New Way to Pay for a Breakthrough Treatment
Sickle cell disease is an inherited blood disorder that causes severe pain and progressive organ damage, and it disproportionately affects Black patients — many of whom rely on Medicaid for coverage. The FDA approved the first two gene therapies for the disease in late 2023, giving some patients a realistic shot at producing healthier blood cells instead of managing a lifelong condition. But the treatment is anything but simple: patients move through consultations, organ testing, insurance approval, cell collection and processing, chemotherapy, and finally infusion — a process that runs roughly a year from decision to completion and includes a 30- to 40-day hospital stay during the chemotherapy phase.
Under Virginia’s new funding model, the state can:
- Pay separately for the gene therapy drug itself and for the delivery care surrounding it
- Negotiate outcome-based agreements with manufacturers, paying less if a treatment underperforms clinically
- Cover fertility preservation, since the chemotherapy that precedes gene therapy can affect fertility
Closing Gaps Before the Gene Therapy Stage
Children’s Hospital of Richmond at VCU remains Virginia’s only site currently offering the gene therapy itself. But a newer program is helping close the care gaps that come before it. The Sentara-EVMS Comprehensive Sickle Cell Program in Hampton Roads, launched in October 2024, now manages more than 200 adult patients and is onboarding three to five new patients a week, serving a region estimated to have 800 to 1,200 adults living with the disease. Before the clinic opened, many of those patients had to travel to Richmond or North Carolina just to find specialists familiar with the disease.
“They were either seeking care with their primary care doctors or hematologists that may not see a lot of sickle cell patients,” said Dr. Madeeha Deo, medical director of the Sentara-EVMS program.
Deo was clear that the new Medicaid dollars won’t replace the need for broader comprehensive care. “There will be a lot of patients who will not be gene therapy candidates and will still need access to good comprehensive sickle cell care,” she said.
Standardizing Access and Reimbursement
At VCU, Elizabeth Krieger, director of pediatric stem cell transplantation, said the funding model’s biggest practical benefit may be administrative. It “standardizes the access criteria for patients and the reimbursement structure,” she said — removing much of the guesswork that has slowed adoption of these therapies since their 2023 approval. Krieger also pointed to fertility preservation coverage as a meaningful improvement for patients weighing the treatment’s tradeoffs.
Cost, eligibility rules, travel, time away from work, fertility concerns, and family support needs have all stood as barriers to gene therapy access for Medicaid patients, who make up a large share of the sickle cell population nationally. With this investment, Virginia joins a growing list of states participating in the federal Cell and Gene Therapy Access Model, aimed at giving state Medicaid programs a sustainable path to covering next-generation cell and gene therapies.
Why It Matters for the BioHealth Capital Region
Virginia’s move is another signal that the region’s life sciences ecosystem — from VCU and EVMS to Sentara’s clinical network — is positioning itself at the front edge of cell and gene therapy delivery, not just development. As more advanced therapies clear the FDA pipeline, state-level payment innovation like this will increasingly determine which patients can actually access the treatments biotech companies bring to market.
