Clevetta Drew

Clevetta Drew, NIH gene therapy trial participant

Her story: Clevetta Drew, age 41, was diagnosed with sickle cell anemia at 18 months old and throughout her childhood found herself in and out of hospitals for infections and pneumonia. After she experienced her first pain crisis at age 19, the grueling fallout of the disease picked up pace, and Drew became a regular in emergency rooms. Sometimes she went 20 times in a year. “I wasn’t really living a life,” she said. She started a hydroxyurea treatment trial at the NIH in 2011, but over time the pain-reducing effects began to wane, and more complications emerged. She had chest and hip problems, a blood clot in an artery of her lung, and gastrointestinal bleeding from blood thinners. By 2018, she was in daily pain, and disability had put her life on hold. That’s when Drew found out about a gene therapy trial that could potentially change her life. So she weighed her options, consulted with her mother and partner, both of whom are in the medical field, researched the trial, signed up for a screening, prayed, and hoped for the best.

How she prepared: In preparation for the trial, Drew learned everything she could about sickle cell disease. She also did everything she could to prepare for the therapy, which involved transplanting genetically modified blood cells into her bone marrow. This took a lot of preparation. As part of the study, she shared cells from her bone marrow with researchers. They modified the blood-forming cells and transplanted them back into her bone marrow to help her body produce a normal hemoglobin – the protein that’s essential for red blood cells to carry oxygen to tissues in the body (and that is abnormal in sickle cell disease). Once the bone marrow transplant was complete, she followed stringent instructions for the first 100 days to reduce the risk for infection.

Her happy ending: “My whole life has changed,” Drew said. Just three months after the transplant in 2019, she started doing things she never thought were possible. She went off pain medications and antidepressants. She went for a hike. Soon, she was doing chores, cooking, and caring for her pets without pain. Eventually she got a job delivering packages starting at 4:30 a.m., which is physically strenuous but now tolerable – even in extreme weather. Drew said she can even walk into a frozen food aisle at the grocery store without fearing a pain crisis. “I don’t have to worry about these things anymore,” she said. “I turned 40 last year and had a complete rebirth.”

A new perspective: “I have not just had to train myself and my own thoughts, but [the thoughts of] my family, friends, and loved ones,” Drew said. “I tell them, when you call me or see me, you can say, How are you doing? Not, How are you feeling?” That’s because she’s feeling just fine. Even after suffering a respiratory tract infection, she felt okay and didn’t have to be hospitalized. She said she now realizes a minor cold doesn’t mean her disease is flaring up or she needs to brace for pain. Best of all, she said she can actually plan for retirement – something she never thought would be necessary before because she didn’t think she would live that long.

Spreading the word: “This is something I will shout to the world and talk to anyone about,” Drew said about the gene therapy trial. “It changed my life in less than a year.” And for those embarking on a similar journey, she plans to use her experience as a way to help others with sickle cell disease use similar tools that helped her prepare to live a life without pain.