Participating in clinical trials to help cure the next person

“I love St. Jude, and I trust them with my life,” said Corey Luellen, who was treated at St. Jude for sickle cell disease. Sickle cell disease causes regular pain crises, as well as organ damage. Luellen was born with a mutation in the gene for the oxygen-carrying molecule hemoglobin. That single mutation causes red blood cells to take on a C or sickled shape and causes them to get stuck in narrow blood vessels. These clogged vessels are what cause problems throughout the body.

At St. Jude, Luellen had a special opportunity: to participate in a clinical trial of a new type of treatment for sickle cell disease. He was one of a handful of patients enrolled in the study that used gene editing to treat the condition at the DNA level. Gene editing for sickle cell disease is on the cutting edge of science-informed therapy and is a major focus of research at St. Jude.

How did the experimental treatment go for Luellen? The number of pain crises that Luellen has had has decreased dramatically. In the two years since he received gene therapy, he was only admitted for a pain crisis once.

“I haven’t had a blood transfusion in two years, and that’s kind of amazing,” Luellen said. Prior to treatment, he was receiving monthly transfusions to manage his symptoms. “I was always feeling down. I can tell the difference; I do feel better. I feel like I can do things more freely now.” 

The key to his choice to participate in clinical research was thinking about the future.

“I was thinking about my health really long term because I know sickle cell is a long-term disease,” Luellen said. “The problems I was having, I just didn’t want them to get worse as I got older.”

Throughout the study, another motivation emerged: helping other sickle cell patients. Rather than seeing the trial as just a treatment for him individually, Luellen came to see it as his opportunity to assist those struggling with the same condition. His participation advanced medicine one step closer to curing sickle cell disease.

“I got a chance to help somebody else who’s going through the same thing or who went through worse,” Luellen said. “I’m happy I did it because I got the chance to help somebody else, even though their disease may be different. I got a chance to help the next person.”