A Group under the auspices of People Living with Sickle Cell Disorders has urged the Nigerian Medical Association (NMA) to educate Nigerians on evidence-based management and treatment of the disorder.
The group also called on the National Assembly to pass a law protecting their rights and preventing discrimination.
In a statement signed by National Coordinator Aisha Maduagwu, the group asked the Federal Government to subsidize treatment at federal hospitals and provide insurance cover for patients across the 36 states and Abuja.
Maduagwu, also condemned the high cost of stem cell transplant treatment, saying it's unaffordable for millions of parents.
She argued that the treatment is not a straightforward "cure" in Nigeria and urged NMA to regulate unsubstantiated claims about cures.
The Sickle Cell Orphanage and Underprivileged Home in Agulu, Anambra State founded by Maduagwu, houses over 600 persons.
The group also called on the National Assembly to pass a law protecting their rights and preventing discrimination.
In a statement signed by National Coordinator Aisha Maduagwu, the group asked the Federal Government to subsidize treatment at federal hospitals and provide insurance cover for patients across the 36 states and Abuja.
Maduagwu, also condemned the high cost of stem cell transplant treatment, saying it's unaffordable for millions of parents.
She argued that the treatment is not a straightforward "cure" in Nigeria and urged NMA to regulate unsubstantiated claims about cures.
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.
"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.
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.
"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.
The Sickle Cell Orphanage and Underprivileged Home in Agulu, Anambra State founded by Maduagwu, houses over 600 persons.
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