Group Urges NMA to Educate Nigerians on Evidence-Based Sickle Cell Management

By Nabob Ogbonna, Abakaliki

A group operating under the auspices of People Living with Sickle Cell Disorders has called on the Nigerian Medical Association (NMA) to intensify public education on evidence-based management and treatment of sickle cell disorder (SCD) including providing clear, responsible information on stem cell transplant therapy.
The group also urged the National Assembly to enact legislation that would protect the rights of persons living with sickle cell disorder, particularly against social discrimination, while ensuring access to institutional support.
In addition, it appealed to the Federal Government to subsidize sickle cell treatment in federal and state teaching hospitals and to provide health insurance coverage for affected persons across the 36 states of the federation and the Federal Capital Territory.
These demands were contained in a press statement signed by the National Coordinator of the group, Mrs. Aisha Maduagwu, and made available to journalists on Sunday.
According to Maduagwu, the group is calling on the national leadership of the NMA to collaborate with the Federal Ministry of Health in launching sustained nationwide awareness campaigns focused on scientifically proven approaches to managing sickle cell disorder.
“We respectfully urge the National Council of the NMA to initiate nationwide campaigns, in partnership with the Federal Ministry of Health, to educate Nigerians on evidence-based management of sickle cell disorder and the realistic role of advanced treatments such as stem cell transplantation,” she said.
She further appealed to the Federal Government to ease the financial burden borne by affected families.
“We are also calling on the Federal Government to subsidize treatment and provide insurance coverage for the millions of Nigerians living with sickle cell disorder.
Treatment should be accessible in federal hospitals and state teaching hospitals across all 36 states and the FCT, including rural communities,” she added.
Maduagwu noted that such interventions would significantly improve the quality of life of people living with the condition and enable them to live productive and meaningful lives.
The group’s coordinator, who is also the founder of the Sickle Cell Orphanage and Underprivileged Home in Agulu, Anambra State, expressed concern over the rising cost of stem cell transplant procedures, which she said now exceed ₦120 million per patient, placing them far beyond the reach of most Nigerian families.
She argued that, despite ongoing discussions, stem cell (bone marrow) transplantation has not yet been widely practiced or established in Nigeria as a straightforward or universally accessible cure for sickle cell disorder.
“As a concerned citizen and advocate for people living with sickle cell disease in Nigeria, I wish to draw the attention of the Nigerian Medical Association to the growing dissemination of unsubstantiated or overly optimistic claims about ‘cures’ for the disease, which undermine patient trust and demand urgent regulatory attention,” she said.
Maduagwu emphasized that sickle cell disorder, which affects millions of Nigerians, remains a major public health challenge and requires responsible communication from medical and advocacy institutions.
She reiterated that the condition is currently managed primarily through evidence-based interventions such as pain management, hydroxyurea therapy, blood transfusions, and preventive care against infections and other complications.
“When properly administered, these treatment options enable individuals living with sickle cell disorder to lead productive lives,” she said.
She further criticized what she described as aggressive promotion of stem cell transplant procedures by some organizations, noting that costs reportedly range between ₦120 million and ₦140 million per patient.
According to her, such treatments are not without serious limitations, as they carry significant risks, including infections and infertility, and do not guarantee success for all patients.
InsideOut News reports that the Sickle Cell Orphanage and Underprivileged Home in Agulu currently provides shelter and care for over 600 persons living with sickle cell disorder and other vulnerabilities.