A group under the auspices of People Living with Sickle Cell Disorders has charged the Nigerian Medical Association (NMA) to intensify public education on evidence-based management and treatment of sickle cell disorder, including clear guidance on the controversial stem cell transplant option.
The group also called on the National Assembly to enact laws protecting the rights of persons living with sickle cell disorder, including protection against social discrimination and provision of institutional support. It further urged the Federal Government to subsidise treatment at federal hospitals and state teaching hospitals, and to provide health insurance coverage for patients across the 36 states of the federation and the Federal Capital Territory, Abuja.
These demands were contained in a press statement signed by the group’s National Coordinator, Mrs Aisha Maduagwu, and made available to journalists on Sunday.
According to her, the group is appealing to the National Council of the NMA to initiate nationwide sensitisation campaigns, in partnership with the Federal Ministry of Health, to educate Nigerians on evidence-based sickle cell management and the realistic role of advanced treatments such as stem cell transplants.
“We are also calling on the Federal Government to subsidise treatment and provide insurance coverage for the millions of Nigerians living with sickle cell disorder, making care accessible in federal hospitals and state teaching hospitals across the 36 states and Abuja, including rural areas,” she said.
She noted that such measures would significantly improve the health and productivity of people living with sickle cell disorder.
Maduagwu, who is also the founder of the Sickle Cell Orphanage and Underprivileged Home in Agulu, Anambra State, condemned the high cost of stem cell transplant treatment, which she said costs over ₦120 million per patient and remains unaffordable for millions of families.
She further argued that stem cell transplant, also known as bone marrow transplant, has not been widely practised or proven as a straightforward cure for sickle cell disorder in Nigeria.
“Therefore, as a concerned citizen and advocate for sickle cell disease in Nigeria, I wish to draw the attention of the Nigerian Medical Association to a pressing issue that undermines patient trust,” she stated.
She described sickle cell disease as a major public health challenge affecting millions of Nigerians, adding that the spread of unsubstantiated or overly optimistic claims about a ‘cure’ calls for urgent regulatory intervention by the NMA.
“It is well established that sickle cell disease has no universally accessible cure and is primarily managed through symptomatic treatments such as pain management, hydroxyurea therapy, blood transfusions, and preventive care against infections and complications,” she said.
According to her, when properly administered, these treatments allow people living with sickle cell disorder to lead productive lives.
Maduagwu criticised what she described as “audacious claims” being amplified daily, noting that some treatments are priced between ₦120 million and ₦140 million, which she described as unacceptable.
She added that stem cell transplant is not without significant risks, including infection and infertility, and that success is not guaranteed for all patients.
The Sickle Cell Orphanage and Underprivileged Home in Agulu, she disclosed, is currently housing over 600 persons.