Donte Cofield spent more than three decades believing he might die at any time. On the evening of September 9, he stood before a packed audience at Kaiser Permanente Bernard J. Tyson School of Medicine (KPSOM) as living proof of what has changed.
Cofield, a 36-year-old husband, father of three, and mechanic, is the first adult in Los Angeles County cured of sickle cell disease (SCD) through an innovative stem cell procedure made possible through a collaboration between Kaiser Permanente's Sickle Cell Center of Excellence and City of Hope. He was a featured guest at “Sickle Cell Awareness and Education,” an evening reception and panel discussion hosted by the KPSOM Office of Advancement that brought together clinicians, students, staff, and community members to mark National Sickle Cell Awareness Month.
“I've made video messages and postdated them for my kids’ birthdays that I didn't think I was going to make it to,” Cofield said. He provided advice for his eldest daughter when she was six years old for her 16th birthday explaining, "Hey, in case I'm not here, this is life advice I want to give you because I might not see you get to this age.” And when Jerry Cheng, MD, KPSOM Clinical Professor of Clinical Science, pediatric hematologist-oncologist, and Chief of Pediatrics for Kaiser Permanente Los Angeles Medical Center, told Cofield he would be here to raise his kids, Cofield said, “I'm down. I'll take any treatment you got.’”
Sickle cell disease is an inherited blood disorder that distorts red blood cells into a rigid, crescent shape that can block blood flow, starve tissue of oxygen, and trigger excruciating pain crises. It affects more than 100,000 people in the United States and disproportionately impacts African American individuals.
For most of his life, Cofield described his pain as being “constantly hit with a hammer every time your heart beats.” He was placed on morphine as a child, then cycled through multiple hospitalizations. As a teenager, he assumed “I ain't gonna be here that much longer,” a fatalism that fueled reckless choices in his youth, he said. That changed after Cofield learned about a newly FDA-approved gene therapy in an unlikely way: a “Saturday Night Live” sketch joking about the breakthrough. At Kaiser Permanente's Sickle Cell Center of Excellence, he underwent a roughly 10-month treatment process, including monthly blood exchanges and a lengthy hospital stay that concluded last December. He has not needed so much as an ibuprofen since, he said.
“I've never felt so much gratitude take over my life because I didn't expect to live to the age of 35, let alone be cured,” Cofield told the audience. “I'd lost hope in a cure a long time ago, and to be the first adult in the area to be cured is a prayer I never expected to be answered.”
Building trust, building systems
Cofield's cure did not happen in isolation. In the KPSOM panel discussion, clinicians described decades of relationship-building and the newly built clinical infrastructure that made the moment possible.
Diane Batham, RN, MSN, CPNP-PC, a pediatric nurse practitioner who has cared for sickle cell patients for nearly 40 years at Kaiser Permanente's Downey Sickle Cell/Hemoglobinopathy Center, has known Cofield since he was three weeks old. “I'm on your side,” she said, describing her approach to patients and families. “That's establishing that trust that we're like family.” Two of Cofield's children have sickle cell disease and another inherited the trait, and today, Batham is now their nurse practitioner as well.
“Once we got wind that there was an interest to invest in the care of sickle cell patients the last few years, beyond just stem cell transplants, we really created a strategic collaboration with City of Hope,” said Cheng, who helped broker the partnership that has made adult gene therapy possible within Kaiser Permanente Southern California. “The science in Kaiser Permanente is amazing because we have full line-of-sight on all our members with chronic disease. We have over 950 sickle cell patients insured by Kaiser Permanente; we have two Centers of Excellence … So, we have a process, we have a structure, we have a strategy, and that was the only reason we're able to do things like this.
“I'm proud to say, Donte is one of seven patients we've infused this year,” Cheng said. “Most activated treatment centers are not even doing close to that number at this point.”
