Stephon Fisher is a normal guy. He works, he hangs out with friends, he enjoys time with his family, he plans for a healthy future. And this type of existence is new to him. Stephon is the first person to undergo a remarkable new therapy at The University of Kansas Cancer Center that freed him from a lifetime of pain marked by regular hospital stays due to sickle cell disease.
“I feel amazing,” says Stephon of his life today. “I do feel like I’ve been able to reclaim an aspect of my life that I never had.”
Undergoing gene therapy reprogrammed his body’s ability to produce normal red blood cells and allowed the 30-year-old engineering technician to finally put his disease on the back burner while he forges ahead with life.
No stranger to pain
Sickle cell disease is an inherited condition that disproportionately affects people with African or Middle Eastern ancestry in which red blood cells are misshapen into a crescent or sickle shape. These cells block normal blood flow and cause anemia and other potential health problems. When the sickle-shaped cells stick to blood vessel walls they stop or slow blood flow and oxygenation to cells and tissue, causing severe pain, often referred to as a “pain crisis.”
Stephon was no stranger to pain crises, and sickle cell disease defined his childhood. “I was in the hospital maybe 2 or 3 times a year,” he recalls. “I was afraid to do strenuous activity because of my condition, so I didn’t really play sports, and my parents didn’t want me to be unsupervised for too long because they were afraid of what would happen.”
As a college student in Tennessee, working and studying, Stephon was stressed and going to the local hospital’s emergency department every 2 to 3 months with severe pain. One night, while he was triaged and admitted to get the drug and oxygen treatments needed to quell the pain, a nurse said in an offhand manner, “You know, they’re curing this now” and followed up with contact information for a physician who was part of a group studying the use of gene therapy for sickle cell disease.
Stephon wasn’t ready to commit to a clinical trial. “I was trying to finish my degree, I was really cautious, and it just wasn’t the right time for me,” he says. But gene therapy was on Stephon’s radar, and when he settled in Overland Park, Kansas, and began his career he made an appointment with Robert Kribs, MD, a hematologist with the cancer center.
Dr. Kribs was enthusiastic about gene therapy’s possibilities based on research data, but the treatment wasn’t yet widely available. However, the door was open, and when the cancer center began offering the new treatment, Dr. Kribs contacted Stephon. This time, Stephon was ready.