High-cost sickle cell gene therapies push insurers and Medicaid programs to find new payment models

Key Points

  • Deshawn "DJ" Chow, a 19-year-old sickle cell patient, received treatment with Casgevy, a gene therapy costing over $2 million per patient.
  • The treatment process involved multiple hospitalizations and chemotherapy, with insurance covering most costs.
  • Sickle cell disease disproportionately affects Black people, causing severe pain episodes and frequent hospital visits.
  • The ramp-up of treatment capacity has been slow, with only over 100 patients treated in the first year since FDA approval.
  • New payment models are being considered to manage the high costs of these therapies, especially for Medicaid programs.

Summary

Deshawn "DJ" Chow, a 19-year-old with sickle cell disease, has been able to access a new gene therapy, Casgevy, thanks to his parents' employer-sponsored insurance covering most of the treatment costs. Sickle cell disease, which affects red blood cells, causes severe pain and frequent hospital visits, particularly among Black individuals. Despite the FDA approval of two gene therapies over a year ago, the rollout has been slow, with only a small number of patients treated due to the high costs and logistical challenges. The therapies, priced at over $2 million per patient, involve complex procedures including chemotherapy. Insurance coverage has been a learning curve for treatment centers, but processes are improving. However, the financial burden remains significant, prompting discussions on new payment models to distribute costs more evenly, especially for Medicaid programs where over half of sickle cell patients are covered. The Biden administration has introduced a payment model to help states manage these costs, but even with federal funding, the financial impact on state budgets could be substantial.

cnbc
February 18, 2025
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