The National Coordinator, Association of Persons Living with Sickle Cell Disease, Mrs Aisha Edwards Maduagwu has raised concerns over what she described as the dissemination of unsubstantiated claims by a group, about a possible cure for Sickle Cell Disease, SCD, craving the regulatory intervention of the Nigerian Medical Association (NMA) towards addressing the anomaly.
Statistics show 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.
However, recent reports and social media discussions have highlighted claims by some individuals and entities promoting stem cell transplant (bone marrow transplant) as a straightforward cure for SCD.
According to Maduagwu, these audacious claims are being amplified day to day by the Sickle Cell Foundation Nigeria (SCFN), where treatment is pegged at between 60 million to 90 million naira.
She noted that the said treatment is not without significant limitations, as it carries risks such as infection and infertility, while its success is not guaranteed for all patients, especially those without compatible donors.
“Instead of solely promoting stem cell transplant as the only panacea, efforts should be focused on comprehensive management programs for sickle cell disease, such as subsidized medical costs through free or low-cost health insurance coverage, providing tools and resources for economic survival, such as job training and employment opportunities, and advocating for legislation to protect the rights of individuals with sickle cell, including anti-discrimination laws and social support.
“As a full grown adult and a mother warrior, and founder of both the Association of People Living with Sickle Cell Disorder, and the Sickle Cell Orphanage and Underprivileged Home, providing exclusive care and shelter to numerous orphaned and vulnerable sickle cell children in south east Nigeria, my major concern are centered on the medical , economic and social wellbeing of sickle cell individuals, and to full extent we’ve been able to provide such succor to them in their hundreds freely.
“I have received calls from warriors nationwide, Lagos, Kano, Bayelsa, etc, begging that they become registered and admitted under our umbrella, to start benefiting from our social support programs.
“We are relentless in our push for government interventions which is our hope and the only panacea for the sickle cell disease and its management.
“If those proponents of stem cell transplant can channel their energies towards such social support programs, the sickle cell communities nationwide would be far better off, rather than coming out every Christmas period to hype stem cell with the sole motive to gain weight in naira or dollars causing so much financial distress and mental breakdown among the rich families with Sickle Cell Anemia Children,” she said.
Maduagwu expressed worry how the common man in the streets can afford 60 to 80 million naira for stem cell transplant when he cannot feed, arguing that it is more expedient to first provide sufferers with comfort that will necessitate their growth.
According to her, experiences have shown that when sickle cell individuals are provided with the basic needs of life, good food, shelter, access to medicare, economic stability, security from discrimination and stigma, and emotional support, they tend to adjust productively and contribute meaningfully to the society.
She also expressed concern over the recklessness and errors of laboratory scientist/technicians, which lead to false results, and misinformation of couples about their genotype results, calling for the NMA intervention.
“I have received numerous complaints from anxious couples whom are emotionally traumatized by the mistakes of these practitioners. This is gross and unacceptable, and I hope NMA would do something urgently about it,” she said.
