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UConn Health outlines sickle cell care, trials and a call for Black blood donors
Summary
Dr. Janice Nelson of UConn Health described diagnosis, standard care and emergency protocols for sickle cell disease, the limited curative role of bone marrow transplant, the cost and hospitalization risks of newer gene/stem-cell therapies, and urged Black donors to give blood earmarked for sickle cell patients.
Dr. Janice Nelson, nursing director at UConn Health’s New England Sickle Cell Institute, described the clinical management of sickle cell disease and the research work underway to expand local treatment options.
Nelson explained that sickle cell disease is an inherited red blood cell disorder; newborn screening in Connecticut identifies affected infants so they can begin care early. She said bone marrow transplant can cure some patients but requires a close genetic match and is not widely available, and that newer stem-cell and gene therapies can be life‑changing but are complex and costly. "There is a cure for sickle cell disease...a bone marrow transplant can cure sickle cell disease," Nelson said, while noting the intensive conditioning and matching requirements.
Nelson outlined standard treatments including chronic transfusion protocols for patients with stroke history and emergent transfusions for acute chest syndrome. She said the clinic currently has four clinical trials open and is working toward partnering with a bone marrow treatment program seeking accreditation to offer stem-cell therapeutics locally.
Nelson also urged more blood donations from the Black community because antigen differences reduce compatible blood supply for sickle cell patients and some patients develop antibodies after repeated transfusions. "If I could do anything, I would encourage the Black community to come out and donate blood and earmark it specifically for sickle cell disease," she said.
The podcast included a patient perspective: Dacia Dillon described how monthly infusion therapy and chronic pain management improved her ability to work and care for her child.
The episode noted approximate treatment cost ranges mentioned by Nelson for certain advanced therapies (transcript: about $3 million to $5 million) and said UConn is exploring offering stem‑cell therapeutics in the future. The program recommended consulting clinical teams for treatment eligibility and directs listeners to speak with their care providers about trials and transfusion needs.
