Sickle Cell
Blood Cells with Sickle Cell Anemia

Group Calls on National Assembly to Enact Sickle Cell Bill  

A sickle cell advocacy group, the Coalition of Sickle Cell NGOs, has urged the National Assembly to prioritise the enactment of the Sickle Cell Bill.

The appeal, intended to benefit individuals living with sickle cell disease and the broader Nigerian population, was announced in a statement in recognition of World Sickle Cell Day.

The United Nations, during its 63rd General Assembly session in December 2008, identified sickle cell disease as a significant public health issue and one of the most prominent genetic disorders worldwide.

Subsequently, the UN designated June 19 as World Sickle Cell Day to increase global awareness, a tradition that has been observed annually since 2009.

The advocates highlighted the history of the Sickle Cell Bill in Nigeria, noting that it was first debated in the Senate in 2021.

However, the bill has since stalled in the legislative process, failing to progress to the Federal House of Representatives.

Sponsored by Senator Sam Egwu, the bill seeks to establish measures for the prevention, control, and management of sickle cell anemia.

Founding Executive Director of the Sickle Cell Advocacy and Management Initiative and Chairperson of the Coalition of Sickle Cell NGOs, Ms. Toyin Adesola, emphasized the critical need for increased awareness about sickle cell disease.

She underscored the importance of collective action in raising awareness, particularly through initiatives like the Red Umbrella Walk held in various parts of Lagos and Nigeria.

Adesola urged legislators to revisit and pass the Sickle Cell Bill, citing the significant human rights implications for parents and individuals living with the disease.

She recounted previous efforts by the Coalition of Sickle Cell NGOs to amend the bill in the Senate to address these concerns before it stalled in the House of Representatives.

Adesola criticized the Ministry of Health for not giving adequate attention to sickle cell disease, stressing the need for a focused approach to healthcare legislation.

“There was a bill on the floor of the Senate some years ago that we had to intervene as Coalition of Sickle Cell NGOs because it stepped on human rights of not only the parents and parents-to-be but even persons living with sickle cell themselves. The Senate corrected some things and then moved it to the House of Reps, it was at this point that we didn’t hear anything again.

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

“I would like to tell our 360 members of the House of Reps that they should imagine if this person was your child. And I know that some of you have children who live with sickle cell but you are not telling it. You have the money to support them but what about those 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,” she said.

Mrs. Omowunmi Odumosu, a mother of a seven-year-old boy with sickle cell, appealed to the government to address the rising costs of medication, which pose significant challenges for affected families.

She expressed gratitude for existing government efforts but called for increased support to ensure the well-being of children with sickle cell.

“Our government, we beg you. We want to thank you for all that you are doing. We want you to do more. The medicines that we use are now costly. Getting it 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 God that gave them to us will make them survive and succeed,” Odumosu said.

A medical professional who participated in the Red Umbrella Walk, Dr. Emeka Nwune highlighted the importance of genotype testing, particularly for those planning to marry.

He advocated for increased advocacy and the involvement of celebrities to reduce stigma and promote awareness.

Dr. Nwune also called on the government to implement policies that would ensure individuals with sickle cell have access to comprehensive healthcare and support.

“In terms of management, advocacy is the first step. Genotype testing is crucial even if your parents told you your genotype, you still need to go ahead to check yourself in at least two to three places to confirm your correct genotype. Before settling down, know the genotype of the person you are settling with, this is to avoid giving birth to a child living with sickle cell. We can do more in terms of advocacy.

“I noticed Nigerians love to listen to celebrities so if celebrities can lend their voice, it will help. If others like us who don’t live with sickle cell do not stigmatise and support persons with sickle cell, it would greatly help,” he said.