Tony May Foundation, a non-profit organisation that offers care, awareness and advocacy for people living with Sickle Cell Disorder (SCD) is seeking an upgrade in Nigeria’s capacity to manage the disease, especially in terms of kitting hospitals and medical workers to avert deaths.
The organisation said the country’s health system needs to be better resourced to drive down the prevalence of SCD and the attendant deaths in the near future so that affected individuals can live a good quality and contribute meaningfully to society.
SCD is an inherited disorder of haemoglobin and the most prevalent genetic disease in Nigeria.
A study 2021 study by the Lancet shows that the burden of child mortality from sickle cell disease in Nigeria continues to be disproportionately higher than the burden of mortality of children without sickle cell disease.
About 24 percent of the Nigerian population are carriers of the mutant gene, with the prevalence of sickle-cell anaemia about 20 per 1,000 births, according to the World Health Organisation.
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The situation in most African countries where about 10 to 40 percent of the population carries sickle cell indicates that current national policies and plans are inadequate, the global body says in a strategy report. Appropriate facilities and trained personnel are also scarce and adequate diagnostic tools and treatment is insufficient.
Part of its recommendation is that strategies and interventions to reduce SCD-related illnesses and mortality should focus on adequate management of these vulnerable groups through improved awareness, disease prevention and early detection. The interventions should target improvements in health-care provision; effective clinical, laboratory, diagnostic and imaging facilities adapted to different levels of the health system.
It should also cover the screening of newborns; training of health workers and development of protocols; genetic counselling and testing; accessibility to health care; establishment of patient support groups; advocacy; and research.
Based on this, the foundation on its path is looking to create awareness for people living with SCD in communities and to equip People living with the disease with self-care information through its monthly Sickle Cell Education clinics.
It works to connect patients with hospitals that can receive quality and affordable care and advocates for their acceptance through social media campaigns, stakeholder meetings, memoranda, summits and seminars.
The foundation began in 2011 following the demise of Anthony and Mary, two promising siblings, in a space of six months as a result of sickle cell complications and poor access to healthcare.
“At TonyMay Foundation, we imagine a world where the term ‘sickle cell’ is not synonymous with death and in which sickle cell warriors can enjoy a good quality of life; and a world where Nigerian hospitals and medical staff are better equipped with adequate training, care and facilities to properly manage sickle cell patients,” Winifred Otokhina, the Chief Operating Officer of TonyMay Foundation said.
Since its inception, the organisation has organised monthly clinics for over two thousand people living with sickle cell disorder in KiriKiri communities in Lagos State.
In addition to healthcare, TMF advocates for policies that improve the well-being of sickle cell warriors in Nigeria.
In 2019, TMF partnered with the United States Department and a host of other Sickle Cell Organizations to organize the first Sickle Cell Summit in Nigeria with the theme: “Achieving a Sustainable Policy for People living with Sickle Cell Disorder: Challenges and Prospects”.
TMF has created awareness in over ten local communities in Nigeria and in educational institutions such as the University of Lagos, Akoka, Yaba, Yaba College of Technology, Grenville Schools, Ikeja, Great Trinity College, Olodi-Apapa, Queen Mary Schools, and Radiance High School, Festac Town, Lagos among others.
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