Living with sickle cell disease is challenging. Patients like Kourtney Cunningham experience extreme pain episodes each month, leading to frequent hospitalizations and the need for blood transfusions. Recently, the FDA approved two gene therapies for sickle cell disease, offering hope for a cure. However, a significant hurdle is the high price tags of $2.2 million and $3.1 million for these treatments.

The cost is a significant concern for patients like Cunningham, who rely on Medicaid. Sickle cell disease primarily affects Black individuals, with a substantial percentage relying on Medicaid. This reliance means thousands of patients on Medicaid could be eligible for the gene therapies, potentially straining the program’s budget.

The cost increase for Medicaid is estimated to be between $70 million and $80 million annually in states with high sickle cell disease prevalence. The exact impact depends on how many people access gene therapies, and this uncertainty is causing concern among policymakers.

The Centers for Medicare and Medicaid Services (CMS) is working on an access model for cell and gene therapies to address this issue. The plan aims to coordinate outcomes-based agreements for state Medicaid programs, helping manage the administrative and financial aspects. However, some worry this may lead to federal government price negotiations with pharmaceutical companies.

Alternatives like triaging patients or using warranties are being considered to reduce costs and spread payments over time. Patient advocates emphasize the importance of state Medicaid programs covering these therapies to improve patients’ quality of life.

In conclusion, the high cost of gene therapies for sickle cell disease raises concerns about Medicaid’s ability to cover them. Efforts are underway to address this issue, but finding a balance between affordability and patient access remains challenging, especially for patients of color.