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Ever present, yet underfunded: UNC-Chapel Hill hosts event to support sickle cell patients

A white building with glass says "UNC Health" on it. The sky is blue and pink, reflecting in the windows
Courtesy of UNC Health
The UNC Comprehensive Sickle Cell program provides services to more than 300 adults and 250 children each year at various locations across the state. This Chapel Hill building is the primary outpatient Hematology clinic where adults receive routine care.

A UNC-Chapel Hill program is holding an event on Saturday to raise money in honor of Sickle Cell Awareness month. It’s called the “Full Court Press for Sickle Cell.”

The CDC estimates 100,000 Americans live with sickle cell disease. Hematologist Samuel Wilson is with the UNC Comprehensive Sickle Cell Program, which is organizing Saturday’s event. He said the disease can be a painful one.

“That pain is sort of the tip of the iceberg,” Wilson said. “Sometimes pain is the one thing that we see most, but a lot of other things can happen even without the pain. So, even some people may not have a ton of pain but may have problems with their organs. They may have strokes. They may have all these other health issues.”

Sickle cell disease can block blood flow, leading to health concerns like organ damage, or in severe cases, a shorter lifespan.

A drawing of sickle cells, which curve like a sickle, blocking a blood vessel.
UNC-Chapel Hill News Services
Sickled red blood cells can block blood flow, which can lead to pain and organ damage.
Illustration of red blood cells moving through a blood vessel. Unlike sickled cells, these ones cause no blockage
UNC-Chapel Hill News Services
Without sickle cell disease, red blood cells can pass more easily through blood vessels

More than 5,000 North Carolinians have sickle cell disease, but according to the UNC Comprehensive Sickle Cell Program, the treatment and research for the disease is chronically underfunded.

One study found that cystic fibrosis — which impacts fewer Americans — receives more than triple the funding per person. Wilson and the program attribute this underfunding to systemic racial disparities, as the disease primarily affects Black Americans.

“The amount of research dollars that have gone into sickle cell has been a lot less than some of these other diseases, like cystic fibrosis,” Wilson said. “We're always happy when more research funding and things like that go to different diseases. We just want to bring — from an equity standpoint — we want to bring sickle cell disease up to the same level.”

To help with funding, the UNC program is holding a basketball tournament on Saturday and is encouraging people to donate to the fundraising event. As of Wednesday, the group said it had met $6,000 of its $15,000 goal, with some donations being made directly to teams in the tournament.

Caroline Hale, UNC’s Sickle Cell Program coordinator, said donations will help fund state clinics, and a sickle cell clinic in Malawi, Africa. She said some goals are to cover travel expenses for patients, as well as fund a camp for adolescents to better understand their condition and meet more people with it.

“People often don't know anyone else with sickle cell,” Hale said, despite the disease’s prevalence. “There is often not someone else in their family, luckily, but that leaves them sometimes feeling pretty isolated, and not having someone who really understands and relates. So, I think that also giving patients an opportunity to meet each other will go a long way.”

Hale said she hopes Saturday’s event can serve a similar role.

In addition to the basketball tournament, Saturday’s event for the public will feature live music, food, blood and bone marrow drives, as well as a Carolina blue fire truck to tour. It starts at 10 a.m. at the Ernie Williamson Athletic Center on UNC’s campus.

Sophie Mallinson joined WUNC as a daily news intern in summer 2023. She since has worked as a reporter for the daily news team, largely focusing on environmental stories.
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