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.

ENCNow
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."

HbAD0

    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
  • news@dhhs.nc.gov

Go Back


Leave a Guest Comment

Your Name or Alias
Your Email Address ( your email address will not be published)
Enter Your Comment ( no code or urls allowed, text only please )




Texas Attorney General Sues NGO Over Suspected Facilitation Of Illegal Immigration North Carolina Health, Statewide, Body & Soul, Government, Health and Fitness, State and Federal Early Voting Turnout Numbers 02_23


HbAD1

Latest State and Federal

President Joe Biden formally rejected on Monday a bill in Congress that would require individuals to show proof of U.S. citizenship to register to vote in elections for federal office.
Those with access to President Joe Biden behind closed doors say that his condition is deteriorating at an accelerated rate
Republican lawmakers slammed President Joe Biden this week after an explosive report revealed that an ISIS-affiliated human smuggling network has brought more than 400 illegal aliens into the U.S.
Former President Donald Trump’s legal team filed documents in court on Thursday seeking to have Judge Arthur Engoron thrown off the civil fraud case against Trump in New York after they discovered that he allegedly engaged in “prohibited communications” with an outside party about the case.
Parts of the gag order against former President Donald Trump in his New York hush money case were lifted by Judge Juan Merchan on Tuesday, just two days before Trump is set to square off against President Joe Biden in the first debate of the election season.

HbAD2

'I am a white male and that’s not who they’re looking to promote at the moment,' the man told an undercover journalist.
Viral clips showing President Joe Biden in situations in which he looks to be frail or confused are being dismissed as “cheap fakes” by the White House.
As the first presidential debate between President Joe Biden and Donald Trump nears, the Biden campaign is ratcheting up its attacks on the presumptive Republican nominee’s 34 felony convictions.
Approximately 6,800 people in North Carolina have sickle cell disease, of which approximately 95% are Black or African American.
President Joe Biden delivered remarks on Tuesday at gun control advocacy group Everytown’s annual conference, Gun Sense University — and as is often the case when Biden speaks about guns, critics were quick to point out a series of factual errors.
Democrat strategist James Carville raged against the legacy media this week, demanding that they take an even more biased approach when reporting on former President Donald Trump.

HbAD3

Republican congressman Byron Donalds said it would be a “great honor” if former President Donald Trump were to ask him to be his running-mate for 2024, saying the ultimate goal is for Trump to win and he’ll do whatever he’s asked to help him do that.

HbAD4

 
Back to Top