CHARLOTTE, N.C. — The North Carolina Department of Health and Human Services (NCDHHS) will be applying for a new access model with Centers for Medicare & Medicaid Services (CMS) to make sickle cell gene therapy more accessible for North Carolinians. 

The NCDHHS plans to apply this summer, saying it is waiting for CMS to release more details on the application. CMS’s Cell and Gene Therapy Access Model will first focus on people on Medicaid living with sickle cell disease — an inherited blood disorder which leads to pain crises, hospitalizations, and health issues.  

NCDHHS says around 6,800 North Carolinians have the disease, and 95% are Black, which parallels national numbers. 

Currently, the new FDA approved gene therapy cure for the disease is more than $2 million.

“For your average family, that is not something that, I would say, is accessible or feasible, but it does give us hope,” said Shapera Love, whose 11-year-old daughter has sickle cell disease. “One day at the right time, right place, we will have that option.”

Her daughter, Kylyn Love, was diagnosed at 2 days old. 

“[It’s] pain around my body, whether it’s my back or my arms or my legs — meaning I have to drink more water, use the heating pad, or take medicine,” said Kylyn Love. “I know if I do get gene therapy or a bone marrow transplant, I’m cured and I don’t have to suffer anymore.”

It’s something her parents, Shapera and Eddie Love, are working on for her. The Loves are doing their own research, asking doctors about their options, and are on the board for Sickle Cell Partners of the Carolinas.

“We’re just proud to be on the front lines, especially with Kylyn seeing us advocate for other families, it helps her to advocate for herself,” said Eddie Love. 

The Loves say when Kylyn has a pain crisis, her average hospital stay is about one to three days, typically costing around $5,000.

“Out of pocket expenses are pretty hefty but we’ve made do. And you know, once we get the cure, it will be a non-issue,” said Eddie Love.

Not on Medicare and Medicaid, the Loves ask about their own insurance and qualifications for the cure. Doctors say as insurance companies become more familiar with the sickle cell gene therapy treatment, they will be more likely to start covering at least parts of the treatment.