How Nigeria’s interior ministry can end sickle cell diseases

BY ONOR-OBASSI TAIWO

We can all agree that planning a wedding can most times be rather tedious.  I was so immersed in the preparations for my sister’s wedding last year, you’d think it was me getting married. Since I am the lawyer, I processed the paperwork for their registry marriage and something struck me.

Intending couples in their bid to legalise their union will satisfy everything required of them to make it work. Why don’t we require them to also present a genetic counselling certificate and their genotype test results along with other required documents? As much as we assume they already know, most couples don’t. From experience and as a sickle cell health advocate, it is not out of place for me to think like this.

I was born with sickle cell anaemia and so was my immediate younger brother. I didn’t understand it was a problem until I understood we had to take certain precautions and medicines more than others to reduce frequent breakdowns. I  was certain we would always overcome any crisis until my brother died. This had a huge impact on my life and my health because I was afraid I would die too. In the years that followed, I learnt more about this health condition to live better.

As an adult, I have had reasons to interact with family and friends about genotype compatibility especially as it relates to birthing children living with sickle cell. Then I understood that there was a lot of ignorance and indifference on this topic, coupled with the negative religious and cultural myths around sickle cell disorders. This has contributed to creating stigma and discrimination for most people living with sickle cell disorders. The more significant consequence of this problem is that Nigeria is the sickle cell capital of the world, with 150,000 sickle cell births annually.

In 2018, I began a foundation named in memory of my late brother, Okares Sickle Cell Foundation to promote awareness of the prevention and management of sickle cell disorders mostly in Calabar. In the course of our work, we found that a lot of 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, in spite of learning genetics as a topic in Biology.

I believe people at the point of making a decision as important as getting married, should know their genotypes and understand the implications of their genetic match. The ministry of interior is the licensing authority for the registration of marriages in Nigeria. Mandating genotype tests and counselling for intending couples will increase knowledge and awareness of the prevention and management of sickle cell disorders, and consequently reduce the high birth rates of persons living with sickle cell.

Onor-Obassi is a lawyer, author, and health advocate. He is the founder and chief executive officer of OKares Sickle Cell Foundation.