“The fact that I'm past [the age of] 35 and completely cured with no pain … miracle is overused, but I wanna use the word miracle,” said Donte Cofield, the first adult in Los Angeles County cured of sickle cell disease.
For Cofield, soon-to-be 36 and a married father of three, the cure has changed more than his health. It has changed how he thinks about the future. After a lifetime of pain, hospitalizations and uncertainty, he credits Kaiser Permanente’s Sickle Cell Center of Excellence and an innovative stem cell procedure made possible through Kaiser Permanente’s collaboration with City of Hope.
Sickle cell disease is an inherited blood disorder that affects more than 100,000 people in the United States and approximately 8 million worldwide, according to the National Heart, Lung, and Blood Institute. The disease changes the shape of red blood cells, which can block blood flow, reduce oxygen delivery and trigger severe pain crises and serious complications. It disproportionately affects Black and African American individuals.
For generations, care has focused on managing symptoms, improving quality of life and extending life expectancy. Now, gene therapy is making possible outcomes clinicians describe as a “functional cure” — when the disease no longer causes its defining symptoms, even as long-term follow-up continues.
Cofield spent much of his life expecting sickle cell disease to limit and possibly shorten his future. As a child, he often avoided sports and activities because of his condition. As a young man, he assumed he might not live past 30 or 40. After becoming a father, he began planning for a future he feared he would not see, from securing insurance to recording milestone birthday videos for his daughter.
The pain could be relentless. Cofield endured hospitalizations, medications, and flare-ups he compared to being hit in the back with a hammer. Weather such as extreme cold, heat, and altitude could all trigger complications. Over time, he said, he “grew to loathe [the disease]” and stopped believing a cure would arrive in his lifetime.
“I didn't have the faith to believe that [my disease] would be cured,” Cofield said. “And to be one of the first to be cured is insane for me … I can't describe it.”
