From Nabob Ogbonna, Abakaliki
Group under the auspices of People Living with Sickle Cell Disorders yesterday charged the Nigeria Medical Association (NMA) to educate Nigerians on best evidence based management and treatment of patients living with the disorder including the acclaimed stem cell transplant cure.
The group which also told the national assembly to come up with a law aimed at protecting their rights including anti-social discrimination and support, asked the federal government to subsidize their treatment at federal hospitals, state teaching hospitals and provide insurance cover for their colleagues across the 36 states of the federation including Abuja.
This was contained in a press statement signed by the national coordinator of the group, Mrs. Aisha Maduagwu and was made available to Salient Times on Sunday.
According to her,” we graciously implore the national council of NMA to launch nationwide campaigns, in partnership with the Federal Ministry of Health, to educate the public on evidence-based Sickle Cell Disorders, management and the realistic role of advanced treatments like stem cell transplants.
“We are also calling for the federal government to subsidize to provide insurance cover for the million of Nigerians living with sickle cell and to make treatment accessible to carriers in federal hospitals and state teaching hospitals services in all the 36 states including Abuja including those at the rural areas.
“These approach would go a long way in improving the health of sickle cell carriers to have a productive life,”she said.
Maduagwu, also the founder of Sickle Cell Orphanage and Underprivileged Home, in Agulu, Anambra State, who condemned the high cost of stem cell transplant treatment, added that it cost over 120 million naira per patient and it is unaffordable to millions of parents.
She however argued that stem cell transplant (bone marrow transplant) approach has not medically been practice and proven as straightforward “cure” 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 (NMA) to a pressing issue that undermines patient trust.
“Sickle Cell disease (SCD) affecting millions of Nigerians, remains a significant public health challenge in our country.
“And the dissemination of unsubstantiated or overly optimistic claims about “cures” demand urgent regulatory intervention from your esteemed body, NMA.
“It is well established that SCD has no universally accessible cure and is primarily managed through symptomatic treatments such as pain relief, hydroxyurea therapy, blood transfusions, and preventive measures against infections and complications.
“These approaches, when properly administered, allow individuals with SCD to lead productive lives.
“These audacious claims are being amplified day to day by the Sickle Cell Foundation Nigeria (SCFN) where treatment are pegged approximately between 120 million to 140 million naira is unacceptable.
“And this treatment is not without significant limitations, as it carries risks such as infection and infertility, and it’s success is not guaranteed for all patients,”she stated.
Salient Times observed that the Sickle Cell Orphanage and Underprivileged Home, in Agulu, house over 600 persons.
