Onor-Obassi Egim Tawo is an Nguvu Change leader, health advocate, and founder of the OKares Sickle Cell Foundation whose advocacy includes the “Know Your Genotype” campaign. In this interview, he spoke on the ineffective laws against Sickle Cell Disease in the country, reasons to mandate genotype testing before marriage as well as her campaigns against the disease, among others.
Can you briefly share your experience with Sickle Cell Disease?
Sickle cell disorder (SCD) is an inherited blood disorder affecting haemoglobin, the oxygen-carrying protein. Normally, red blood cells are round and flexible and alive for 100-120 days.
In SCD, they are rigid, sticky, sickle-shaped, and die within 10-12 days. This irregularity leads to numerous health issues, including pain episodes, chronic anaemia, severe fatigue, strokes, organ damage and leg ulcers. I was born with sickle cell anaemia, as was my younger brother.
I was certain we would always overcome this crisis until my brother died. This had a huge impact on my life and health because I was afraid I would die too.
In the years that followed, I learnt more about this condition so I could live better. That made me realise that awareness of SCD is very important for surviving this condition. In 2018, I started a foundation in memory of my late brother. Okares Sickle Cell Foundation now promotes awareness regarding the prevention and management of SCD, mostly in Cross River.
What is your assessment about the rate of genotype testing across the country?
According to the World Health Organisation (WHO), approximately 5 per cent of the world’s population carries trait genes for haemoglobin disorders, mainly Sickle Cell Disease and thalassemia.
Over 300,000 babies with severe haemoglobin disorders are born each year. SCD predominates in Africa, with Nigeria, known as the sickle cell capital of the world, being the greatest sufferer, with 150,000 sickle cell births annually.
While organising Okares Sickle Cell Foundation’s SCD awareness campaigns, I realised that there was a lot of ignorance and indifference towards this topic, creating stigma and discrimination for most people living with this disease. We also found that many young adults do not know their genotypes, genetic counselling is not emphasised before marriage, and even our secondary schools do not understand what sickle cell is, despite teaching genetics in Biology.
That is why I launched an online petition with the support of the Nguvu Collective, urging the Ministry of Interior to mandate genotype counselling and testing for intending couples.
What is your take on genotype test awareness in the country?
In my letter to the Honourable Minister Olubunmi Tunji Ojo, I have already highlighted the poor state of awareness regarding genotype tests in our country. Sickle Cell Disease is not just a medical condition; it is a relentless affliction that imposes severe emotional and financial strain on families, depriving children of their health and robbing families of their joy. I have witnessed firsthand the devastating impact of this disease.
The government’s response to SCD remains insufficient despite the urgent need for better prevention, awareness, treatment and care. Hospitals are inadequately equipped, and the national health insurance scheme fails to provide the necessary coverage, leaving many vulnerable.
The existing laws and regulations intended to manage and mitigate the disease are inconsistent and ineffective. Our nation cannot remain passive in the face of this overwhelming burden; we must act decisively to combat sickle cell disorders.
Why do you think there should be a national law for genotype testing before marriage?
It is crucial to mandate genotype counselling and testing for intending couples as part of the marriage registration process, and this should be strictly monitored by the Ministry of Interior. This initiative is not merely a policy change but is an intervention that underscores our commitment to safeguarding the well-being of future generations. By educating couples about their genotypes, we can also alleviate the economic strain on families and the healthcare system. It will offer hope to parents fearing the heartbreak of watching their children suffer. This way we can support communities burdened by SCD, and steer our nation towards a healthier future.
Can you briefly describe your advocacy/campaign on knowing one’s genotype?
My campaign advocates for a national policy that outlines a strategy for prevention, management, awareness creation and SCD research. The special focus should be on intending couples, helping them to know their genotypes and undergo genetic counselling with documented evidence before marriage.
This initiative aims to significantly reduce ignorance gaps and ensure that young individuals are properly informed about their genetics and its impact on the health and well-being of their future children.
What is your call to action for the government?
I would also like to urge the government to promote SCD awareness and education by implementing nationwide public awareness campaigns, highlighting the importance of early detection and treatment.
To enhance the effectiveness of these campaigns, they could consider partnering with community health workers, community-based organisations (CBOs), NGOs, and local organisations to reach grassroots levels, especially rural communities. Integrating sickle cell education into primary and secondary school curricula will also help foster an early understanding of this disease.
Moreover, a comprehensive policy covering all these aspects will further underscore the country’s dedication to making a substantial impact on public health, aligning with the WHO resolution in 2006 urging states affected by SCD to strengthen their response to the condition.
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