A Long Island hospital has said that it has successfully eliminated sickle cell disease from Sebastien Beauzile, a 21-year-old from Laurelton, using the groundbreaking Lyfgenia gene therapy.
Cohen Children’s Medical Center confirmed Beauzile as the first New Yorker to receive this life-changing treatment, as reported by the New York Post.
“This is a fix,” said Dr. Jeffrey Lipton, the center’s director of pediatric hematology oncology and stem cell transplantation. “Other drugs modify the disease, but this is a cure … I suspect this will replace bone marrow transplants in time.”
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Beauzile, who suffered his first severe sickle cell crisis at just four months old, has spent years in and out of Northwell Health’s facility in New Hyde Park due to his extremely severe condition, as reported by the New York Post.
“Lots of times, the pain was 10 out of 10,” he said. “My back felt like somebody was either pulling on it or hanging on it, my chest would feel like somebody is sitting on it.”
Beauzile’s severe sickle cell disease severely impacted his life, preventing him from traveling without hospital visits, holding a job, and continuing his studies at Queens Community College due to recurring health issues.
“Although he had tried several treatments, none of them were working,” Dr. Banu Aygun, associate chief of hematology, said.
“So when gene therapy became available when it was FDA approved [in late 2023], Sebastien was the first patient in our minds…so that he can dramatically change his life.”
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“At first, it was a little nerve-wracking. But the doctors spoke to me about it, told me what the side effects would be, and I was like, ‘why not?’” Beauzile, who passed time in the hospital building Lego and playing “Dragon Ball Z” video games, said.
“Honestly, it wasn’t that bad.”
Over several months, Beauzile underwent a process where his blood cells were periodically extracted and sent to a lab for gene insertion. In late December, the modified cells were successfully re-infused into his body within minutes.
“Now he’s producing normal adult hemoglobin in his parent cells. You see it in his blood as well,” Dr. Aygun said. “That’s why he’s not having any symptoms related to his sickle cell disease.”
Beauzile remained in the hospital for about a month for monitoring after receiving the gene therapy. He described January 13 as the day he felt like a new man as the treatment took effect.
“When I got my cells, it was like an out-of-body experience…like a second birthday,” he said.
“I’m not in pain anymore. I’ve been able to do a lot of new things,” Beauzile added of working out with no problems and having the first chance for a carefree vacation.
He is also looking to re-enroll in school to pursue a medical career, inspired by his own journey.
“Especially with children who have sickle cell, I feel like if they had somebody that experienced what they are experiencing, went through what they go through, then I could be that role model.”
