NCDHHS Aims to Increase Access to New Sickle Cell Disease Therapies through Federal Partnership | Eastern North Carolina Now

Approximately 6,800 people in North Carolina have sickle cell disease, of which approximately 95% are Black or African American.

Press Release:

    RALEIGH     Approximately 6,800 people in North Carolina have sickle cell disease, of which approximately 95% are Black or African American. This health disparity is paralleled at the national level with more than 100,000 people across the country battling this painful illness. New therapies offer an opportunity to provide long needed relief to these individuals and close long-standing disparities in our country.

    The North Carolina Department of Health and Human Services applauds the federal government action aimed at increasing access to new sickle cell disease therapies. NCDHHS will pursue participation in the new Centers for Medicare & Medicaid Services' Cell and Gene Therapy Access Model, that will first focus on access to recently approved gene therapies for people on Medicaid living with sickle cell disease, a genetic blood disorder that disproportionately impacts Black Americans. The Cell and Gene Therapy (CGT) Access Model aims to improve health outcomes for people by supporting outcomes-based agreements that will provide for treatments within a framework that lowers prices for states and ties payment to outcomes.

    "These therapies can be life-changing for people living with sickle cell disease," said NC Health and Human Services Secretary Kody H. Kinsley. "By working with our federal partners, we have a unique opportunity to address health disparities and increase access to treatments for folks that have been ignored for too long."

    People with sickle cell disease have a life expectancy rate 20 to 25 years lower than someone without sickle cell disease and are more prone to having life-threatening health complications like stroke, renal failure and acute chest syndrome. They also have unpredictable episodes of severe pain that lead to emergency department visits and hospitalizations. The impact of this disease is disproportionately experienced by people in the Southeast, given the higher prevalence of people with sickle cell disease living in the region relative to the rest of the country.

    NCDHHS has updated a white paper it issued in December when the U.S. Food and Drug Administration approved the historic therapies named Casgevy and Lyfgenia, which are now available on the market. In clinical trials, both therapies were found to reduce or completely eliminate the extreme pain crises experienced by people living with sickle cell disease.

    Both therapies, which require multiple intensive steps over a period of time are expected to cost more than $2 million per person, posing a potential budget challenge for state Medicaid programs, which have historically covered more than half of people with sickle cell disease. With North Carolina's participation in the CGT Access Model, it is our goal to increase access to cell and gene therapies and lower health care costs, while also keeping taxpayer costs down.

    "For decades I have worked with communities in our state and nation on how to improve the lives of people with sickle cell disease and related blood disorders who battle these painful illnesses," said Sen. Gladys Robinson. "Sickle cell disease has too long been ignored as a chronic illness that prevents individuals from achieving life quality. These new gene therapies offer hope to thousands of people struggling with sickle cell disease, but we must come together to increase access and lower the costs for the people who need them the most."


    NCDHHS plans to submit an application to CMS this summer and could see benefits as early as January 2025. This is one step forward as North Carolina continues to work with state and federal partners to lower the cost of gene therapies and other costly therapies. NC Medicaid will also work to establish wraparound services to support people with sickle cell disease who qualify for this potentially curative therapy. North Carolina has provided care management and other Sickle Cell Disease services for decades via the North Carolina Sickle Cell Syndrome Program and continues to advance care for people with Sickle Cell Disease through the Governor's NC Appointed Council on Sickle Cell Disease and other Blood Disorders.

  • NC Department of Health and Human Services
  • 2001 Mail Service Center
  • Raleigh, NC 27699-2001
  • Ph: (919) 855-4840

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