With an estimated four million Nigerians living with sickle cell disease (SCD), health experts are advocating the adoption of gene therapy as a curative treatment option for patients in the country.

According to the 2018 National Demographic Survey, between 1.5% and 3% of Nigerians across various geopolitical zones are affected by the condition.

Speaking at the Global Congress on Sickle Cell in Abuja, Professor Jennifer Adair, a faculty member at the University of Massachusetts Chan Medical School and co-founder of the Global Gene Therapy Initiative, encouraged Nigerian patients to embrace curative therapies, including gene therapy and bone marrow transplants.

“Nigeria bears the largest burden of sickle cell disease globally. It’s vital that those living with the disease here understand that curative therapies like gene therapy and bone marrow transplants are real possibilities for a better future,” she said.

Dr. Alexis Thompson, former President of the American Society of Hematology and Chief of Hematology at the Children’s Hospital of Philadelphia, described gene therapy as an extraordinary but complex procedure.

“Gene therapy carries risks similar to those associated with other stem cell transplants,” she said. “These include side effects from chemotherapy, such as hair loss, mouth sores, infections, and bleeding. There are also potential long-term effects like liver abnormalities, lung fibrosis, and infertility.”
Dr. Thompson emphasized the importance of fertility preservation prior to therapy.

“For individuals who have not had children, we recommend harvesting and freezing eggs or sperm before the procedure. While the risk of cancer is considered low—likely below 5%—the risk of infertility is significant enough to warrant precautionary measures,” she noted.

On eligibility for gene therapy, Thompson explained, “Current clinical trials have focused on individuals between ages 12 and 35. However, this doesn’t mean patients outside this age range can’t benefit from future therapies.”

Reflecting on the progress made in the field, Thompson added, “In the past five to ten years, we’ve witnessed groundbreaking advances that allow patients to be their own donors. These developments were once unimaginable.”

Jimi Olaghere, a 39-year-old Nigerian who was cured of SCD through CRISPR gene-editing therapy four years ago, shared his journey.

“Before I was born, my mother didn’t have access to prenatal screening in Nigeria. Fortunately, she was able to go to the U.S., where screening confirmed I would have sickle cell disease,” he said.

Olaghere described gene therapy as life-changing. “It wasn’t easy—it took nearly a year and included chemotherapy, which caused hair loss. But if you’ve lived with sickle cell disease, you can handle the therapy.”

“Today, I have no more crises or pain. I feel like I’ve had an energy boost. But mentally, it’s been a challenge adjusting to life without the disease after living with it for 35 years.”