Deshawn “DJ” Chow He waited a year for treatment that could have changed his life. The 19-year-old was born with sickle cell disease, which causes his red blood cells to be crescent-shaped and sticky. Malformed cells accumulate and block blood vessels, cutting off oxygen to parts of the body and causing episodes of excruciating pain. The disease affects approximately 100,000 people in the United States, most of them black people.
Chow’s pain became more habitual throughout high school, sending him to the hospital frequently. He missed school, birthday parties, and sleepovers with friends. Sometimes the pain lasted for several days. “It’s like my body is on fire,” he says.
A year ago, he learned about a modern drug called Casgevy that could end his long-standing struggle with pain. It is the first approved drug to utilize the Nobel Prize-winning technology known as Crispr, a type of gene editing. Chow received Casgevy on December 5 at City of Hope Cancer Center in Los Angeles. He is one of the first patients in the U.S. to receive the treatment since it was approved in December 2023. It was also approved in January this year to treat beta thalassemia, a related blood disorder.
Due to manufacturing complexity, insurance delays, and extensive patient preparation, few people in the U.S. have received Casgevy since it became available on the market. The sluggish implementation highlights the elaborate nature of commercializing cutting-edge treatments and delivering them to patients. Another genetic therapy for sickle cell disease, Lyfgenia, was approved last December, and the first patient was treated in September. Produced by Bluebird Bio, it uses older technology that introduces a modern gene to treat the disease.
Vertex Pharmaceuticals and Crispr Therapeutics, which developed Casgevy, have not publicly said how many patients have received the therapy so far. WIRED reached everyone 34 hospitals in the US agreed to administer it since December. Of the 26 that responded, only City of Hope and Children’s National Hospital in Washington said they administered Casgevy. (Three hospitals declined to comment and five others did not respond to repeated inquiries.) Chow is the first sickle cell disease patient at City of Hope, while a beta thalassemia patient is being treated at Children’s National. Several authorized centers told WIRED they will start administering Casgevy in early 2025.
“The process of receiving this drug is very different from simply taking a pill,” says Leo Wang, Chow’s hematologist-oncologist at City of Hope. This is a one-time treatment that involves collecting and editing a person’s stem cells. For the patient, this means a ponderous round of chemotherapy before cell collection, and then a month in the hospital.