By Efe Onodjae

Sickle cell advocates have called upon the members of the National Assembly to prioritise the enactment of the Sickle Cell Bill for the good living of all Nigerians, particularly those living with sickle cell disease.

They made this call during the Red Umbrella Walk as part of the 2024 celebration marking World Sickle Cell Day.

The Red Umbrella Walk, organised by the Coalition of Sickle Cell NGOs in Nigeria, was decentralised into various parts of Lagos and other states in Nigeria to maximise impact. The event was themed: ‘Breaking Barriers: Celebrating Strength and Resilience’.

The advocates recalled that the Sickle Cell Bill was debated in the Nigerian Senate in 2021 but has since been abandoned in its transmission to the Federal House of Representatives. The bill, sponsored by Senator Sam Egwu, is for an act to provide for the prevention, control, and management of sickle cell anemia.

Speaking at the venue of the walk, the Founding Executive Director of Sickle Cell Advocacy and Management Initiative (SAMI) and Chairperson of the Coalition of Sickle Cell NGOs in Nigeria, Ms. Toyin Adesola, stated: “The idea of the Coalition of Sickle Cell NGOs is so that we will not work in silos. We believe in working together on the issue of sickle cell. We believe that when we come together as a group, people will understand us better. My hope is that the Red Umbrella Walk, held in different parts of Lagos and Nigeria, will create awareness in our population and spark curiosity when they see different people doing the same thing across different parts of the country. Let people know that this is an issue that needs to be discussed not only now but every time. You cannot wish away people living with sickle cell. You cannot ignore the fact that people will marry and have children with sickle cell because it is still a choice matter. I told someone that unless malaria is eradicated, you cannot eradicate sickle cell.”

On the Sickle Cell Bill, Ms. Adesola added, “There was a bill on the floor of the Senate some years ago that we had to intervene as the Coalition of Sickle Cell NGOs because it infringed on the human rights of not only the parents and parents-to-be but also persons living with sickle cell themselves. The Senate corrected some issues and then moved it to the House of Representatives, but we have not heard anything since.

“From the Ministry of Health, we keep pushing, but they tell us that we are not the only ones they are taking care of and that there are other diseases. But the thing is, if you carry such a mindset, nothing will be done. You should take it one step at a time. You can say we will address sickle cell to this extent, then we will tackle cancer and so on. We know resources are limited, but take one issue at a time, do it before you move on to another issue. The government should arise; you cannot continue to rely on NGOs.

“I would like to tell our 360 members of the House of Representatives to imagine if this person was your child. I know that some of you have children who live with sickle cell but are not disclosing it. You have the money to support them, but what about all these people who don’t have that kind of money? This is not about someone else; it is about you, it is about us, it is about Nigeria. It concerns the productive population of Nigeria, the productive human resources of Nigeria who are intelligent, productive, and can do well for the country.”

Other participants also expressed their thoughts on the celebration.

A mother of a 7-year-old living with sickle cell, Mrs. Omowunmi Odumosu, said, “The Red Umbrella Walk is a great initiative. My child, who has sickle cell, participated in today’s walk. He walked, he is not in pain, he didn’t have a bad experience, in fact, he enjoyed it. People who live with sickle cell have strong bones. It made people who don’t know about SAMI become aware of it. It made people who don’t know about those living with sickle cell realize that they are glorious children, children worth caring for. It showed that SAMI is taking good care of us, even those of us who are parents. I am excited since knowing SAMI.”

“Our government, we beg you. We want to thank you for all that you are doing. We want you to do more. Medicines that we use are now very expensive. Getting them is also another problem. And if we don’t have the medicines, there can be problems. It is not our wish, but God has given us these children, and the God who gave them to us will help them survive and succeed.”