Favour Adinya
Experts drawn from all walks of life have sued for premarital screening laws in Nigeria to combat sickle cell disease in families.
This was the summary of the one-day event on ‘A Sickle Cell Research Review and Book Reading of Northwest’ organized by the Founder of Okares Sickle Cell Foundation, Barrister Onor-Obasi Tawo.
The event brought together legal, medical, and advocacy experts to discuss the importance of premarital screening laws in reducing the prevalence of sickle cell disease in the country.
The State Commissioner of Health, Dr. Henry Ayuk, and other experts emphasize that premarital screening and genetic counseling can significantly reduce the risk of passing the disease to offspring.
The event proposed the establishment of laws requiring premarital screening for sickle cell trait, as well as increased awareness and education programs.
Dr. Marcus Inyama, Consultant Haematologist at the University of Calabar Teaching Hospital (UCTH), highlighted the importance of early detection and treatment.
READ: Can Nigeria Conquer Sickle Cell? Foundation Battles Ignorance And Inadequate Care
Founder of Stilt Mental Health Initiative, Elizabeth Ita, emphasized the psychological impact of the disease on individuals and families.
The event underscored the urgent need for action to combat sickle cell disease in Nigeria. This is said to be achieved by implementing premarital screening laws and increasing awareness that can reduce the prevalence of the disease and improve the quality of life for those affected.
Sickle Cell And Scary Data
According to the World Health Organisation, sickle-cell disease is marked by changes in the shape of the red blood cell from its characteristic doughnut shape into a crescent shape. The misshapen cells often lack plasticity and can block small blood vessels from transporting blood to vital organs.
In Nigeria and other African regions, the majority of children with the most severe form of the disease die before the age of 5, usually from an infection or severe blood loss. In countries such as Cameroon, the Republic of Congo, Gabon, Ghana, and Nigeria, the prevalence is between 20% and 30%. Yet in a place like Uganda, the incidence can be as high as 45%.
The Sickle Cell Foundation of Nigeria estimates that 40 million Nigerians are healthy carriers of the sickle cell gene, with at least 150,000 babies born with sickle cell anemia (Hb SS each year). This is by far the largest burden of the disorder anywhere in the world, compounded by ignorance and inadequate access to proper diagnosis and care.
Burden Turned Into Research – Barr. Onor-Obasi Narrates
I have been a sickle cell health advocate since 2018 when I deliberately planned and executed sickle cell awareness programs and support group events for persons living with SCD otherwise called warriors under the platform of an NGO I founded for that purpose; Okares Sickle Cell Foundation.
Every year so far, we have experienced positive shifts in our programming. We started with hosting SCD awareness campaigns, blogging experiences, then support group events, outreaches to schools, and free genotype test events, before I discovered I could write and wrote my first non-fiction, Rate Your Pain to further the objectives of my foundation. I would go on to write another non-fiction – Northwest in 2021, and we introduced yet another program; voluntary blood donation events. The blood donated was strictly for warriors’ use.
READ ALSO: #TDWAJ EPISODE 356 – Sickle Cell And Public Health Care: Between Knowledge, Rights, And Reality
I like to consider this research as another aspect of our programming; “advocacy and policy influencing.” The journey to today began early last year when I was selected as a change leader for the “We Create Change launchpad 2” by the Nguvu Collective Team and with their help, I launched a campaign on one campaign.
The campaign was addressed to the Ministry of Interior to mandate genotype counseling and testing for intending couples in Nigeria as part of the marriage requirement process. I have close to 1000 signatures on that campaign, I have written letters, open and closed to the Minister but haven’t received any feedback. The most demoralizing was when I wrote to the local marriage registry in Calabar and they rejected my letter.
This year, with the aid of the Nguvu Collective Team, my advocacy efforts have been more on radio and print media. In the course of writing these many articles for the media, I saw the need for this research.
Nigeria bears the highest burden of sickle cell disorders in the world with an estimated 150,000 sickle cell births annually. What are we doing about it? Like Ebola, COVID-19, or HIV, should we wait for international aid or intervention? Would it come? What happened to the WHO’s warning to States most affected by SCD to strengthen their response?” Is our healthcare system suitable to deal with this burden? I also considered this from a Lawyer’s perspective. Do we have laws for the prevention, care, and management of sickle cell disorders?
I remember speaking with Omolara (the partnership specialist who will soon be speaking) about these questions and deciding on that phone call that I wanted to do a Comparative Analysis of Existing laws. She and the Nguvu Collective Team have kept me accountable till this moment. See what came of it. – the research.
Highlights of the interactive event include a book review, question and answer, spoken words, and group photographs among others.
