ADDRESSING MISLEADING CLAIMS ON CURES FOR SICKLE CELL DISEASES

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. The dissemination of unsubstantiated or overly optimistic claims about “cures” demand urgent regulatory intervention from your esteemed body.

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. 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.

These audacious claims are being amplified day to day by the Sickle Cell Foundation Nigeria (SCFN) where treatment are pegged approximately between 60 million to 90 million naira! 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, 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, eg. 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. 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, (first of its kind in Nigeria) 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 it 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.

When Laycon, a sickle cell warrior, won BBN in 2020, he toured the facility of the Sickle Cell Foundation Nigeria, donating handsomely as well as major corporate bodies and international donor agencies towards their programs, but the impact of these contributions was never felt across the nation among warriors at the lowest economic strata because of the agendas of the intellectual elites in SCFN.

How can the common man in the streets afford 60 to 80 million naira for stem cell transplant when he is at loss where his next meal would come from? Isn’t it more expedient to first provide him with comfort that will necessitate his growth? My experiences has proven overtime 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, emotional support, etc, they tend to adjust productively and contribute meaningfully to the society.

Another particular note of worrying concern is directed to laboratory scientist/technicians, who out of their recklessness and errors lead to false results, misinforming couples about their genotype results. I have received numerous complaints from anxious couples whom are emotionally traumatized by the mistakes of these practitioners, thereby tethering their families on the brink of collapse. This is gross and unacceptable, and I hope NMA would do something urgently about it.

In conclusion, I want to thank the following individuals and entities who has stood firmly in support and solidarity for our sickle cell community, registering success after success because of their faithfulness. Former Anambra State First Lady, Chief Mrs Ebele Obiano, who enrolled numerous sickle cell persons from our community into the health insurance scheme. Sir Paul Chukwuma, who donated a well equipped Ambulance bus to our organization to help ferry warriors to hospitals in emergencies. The Anambra State Chapter of the Nigerian Medical Association, ably led by Dr Princeton Okam and his entire Exco. The Commissioner for Health, Anambra State, Dr Afam Obidike for making life easier for all SCD persons in the state with the upgraded and functional public health care facilities. Anambra State Health Insurance Agency (ASHIA) and other too numerous to mention.

I urge the Sickle Cell Foundation Nigeria (SCFN) and cronies, from the point of duty, to provide concrete evidence of successful cure. In this case, if they can provide two or more persons living free from SCD after undergoing this procedure, we would join them in celebrations. I’m also calling on independent experts in the field and the press to take a close look at these claims.

I 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 SCD management and the realistic role of advanced treatments like stem cell transplants. Push for government subsidies, insurance coverage, and affordable alternatives tailored to our population. I urge you all to consider this matter at your next council meeting and provide a public response outlining steps forward.

Thank you all for your unwavering commitment to ethical medicine and the wellbeing of Nigerians living with SCD.

Aisha Edwards Maduagwu,
National Coordinator,
APLSCD and
Director,
Sickle Cell Orphanage and Underprivileged Home Agulu.
08033222007.