Sickle cell disease affects a significant number of individuals in North Carolina, particularly within the Black community, where about 95 percent of cases are found. This genetic blood disorder not only shortens life expectancy by 20-25 years but also increases the risk of life-threatening complications. To address this, the N.C. Department of Health and Human Services is collaborating with the Centers for Medicare and Medicaid Services to enhance access to gene therapies for Medicaid recipients with sickle cell disease. The recent FDA approval of Casgevy and Lyfgenia therapies offers promising results in alleviating the severe pain associated with the disease, although their high costs, estimated at over $2 million per person, pose a significant challenge for Medicaid budgeting.

However, through participation in the CGT Access Model, NCDHHS aims to mitigate this financial barrier, thereby increasing therapy accessibility, reducing healthcare costs, and alleviating the burden on taxpayers. Plans are underway to apply to CMS, with potential benefits expected as early as January 2025.

Additionally, NC Medicaid plans to establish supportive wraparound services to aid individuals qualifying for these potentially curative therapies, further enhancing the overall support system for those affected by sickle cell disease.

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