Nigeria, home to the largest population of people living with sickle cell disease (SCD) worldwide, urgently needs access to curative treatments such as gene therapy and bone marrow transplants, health experts have emphasized.
At the 5th Global Congress on Sickle Cell Disease held recently in Abuja, specialists highlighted the critical demand for innovative and accessible therapies in Nigeria, where approximately 150,000 babies are born with SCD each year.
Professor Jennifer Adair, of the University of Massachusetts Chan Medical School and co-founder of the Global Gene Therapy Initiative, stressed the importance of raising awareness in Nigeria about the promising potential of curative therapies.
“It is vital that patients and families in Nigeria understand that treatments offering a cure are now possible. They deserve a chance for a healthier, fuller life,” she said.
Dr. Alexis Thompson, former President of the American Society of Haematology and Chief of Haematology at the Children’s Hospital of Philadelphia, acknowledged the transformative power of gene therapy but cautioned about its risks.
“Gene therapy involves chemotherapy, which can cause infections, hair loss, and long-term complications like infertility or liver damage,” she explained. “Therefore, fertility preservation such as freezing sperm or eggs before treatment is strongly recommended.”
Reflecting on recent progress, Thompson described how advances in stem cell transplants, particularly patients using their own cells as donors, have revolutionized treatment options over the past decade.
“This is a pivotal moment for the global sickle cell community. While innovation continues, we are already seeing remarkable improvements—children can dream, and adults can live without the constant burden of pain,” she noted.
Sharing his personal journey, Jimi Olaghere, a 39-year-old Nigerian, recounted how he became one of the first people cured of sickle cell disease through a CRISPR gene-editing therapy trial in the United States.
“After 35 years of living with pain crises, hospital visits, and limitations, gene therapy has given me a second chance at life—free from pain and crises,” Olaghere said emotionally. “Coming back to Nigeria to share this story means everything to me.”
Born in the U.S. after his mother traveled for prenatal care, Olaghere’s experience highlights the stark disparities in healthcare access between Nigeria and developed countries.
“I’ve shared my story worldwide, but returning home is where it truly matters. This is where hope for many others begins,” he added.
