Deshawn “DJ” Chow he waited a year to receive the treatment that would change his life. The 19-year-old boy was born with sickle cell disease, which causes red blood cells to become sticky and sticky. Malformed cells build up and block blood vessels, cutting off oxygen to certain parts of the body and causing episodes of severe pain. The condition affects about 100,000 people in the United States, most of whom are Black.
The pain came frequently to Chow in high school, often putting him in the hospital. He missed school, birthday parties, and sleepovers with friends. Sometimes, the pain lasted for days. He says: “It’s like my body is on fire.
Last year, he found out about a new treatment called Casgevy that could end his years-long battle with pain. It is the first drug approved using the Nobel prize-winning technology known as Crispr, a type of gene editing. Chow found Casgevy on December 5 at the City of Hope Cancer Center in Los Angeles. He is among the first patients in the US to receive the treatment since it was approved in December 2023. It was also approved for beta thalassemia, a related blood disorder, this January.
Due to manufacturing complexity, insurance delays, and the extensive preparation involved for patients, few people in the US have been given a dose of Casgevy since it became commercially available. The slow rollout underscores the difficulty of marketing high-quality treatments and getting them to patients. Another sickle cell gene therapy, Lyfgenia, received approval last December, and the first patient was treated in September. Developed by Bluebird Bio, it uses an old technology that introduces a new gene to treat this disease.
Vertex Pharmaceuticals and Crispr Therapeutics, which developed Casgevy, have not publicly said how many patients have received the treatment so far. WIRED has reached all 34 US hospitals authorized to use it since December. Of the 26 that responded, only City of Hope and Nationwide Children’s Hospital in Washington, DC, said they offered Casgevy. (Three hospitals declined to comment, and five others did not respond to multiple inquiries.) Chow is the City of Hope’s first sickle cell patient, while a beta thalassemia patient is being treated at Children’s National. Most accredited facilities told WIRED they will treat their first patients as early as 2025.
“The process of getting this drug is very different from just taking a pill,” said Leo Wang, Chow’s hematologist-oncologist at City of Hope. A one-time treatment that involves collecting and organizing human stem cells. For the patient, it means a difficult cycle of chemotherapy before receiving the cells, and a month in the hospital afterwards.
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