Janet Ogundepo
A sickle cell advocacy group, the Coalition of Sickle Cell NGOs, has called on members of the National Assembly, including the Nigerian Senate and the Federal House of Representatives, to prioritize the enactment of the Sickle Cell Bill for the benefit of people living with the disease and all Nigerians.
They made the call in a press release sent to PUNCH Healthwise following the commemoration of World Sickle Cell Day.
The United Nations declared Sickle Cell a public health problem and ‘one of the world’s foremost genetic diseases’ at the 63rd session of its General Assembly in December 2008.
It then urged member states and organisations to raise awareness of sickle cell disease on June 19 every year, a practice which has gained traction since 2009.
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 as sponsored by Senator Sam Egwu is for an act to provide for the prevention, control and management of sickle cell anemia.
The statement quoted the Founding Executive Director of Sickle Cell Advocacy and Management Initiative and Chairperson of the Coalition of Sickle Cell NGOs in Nigeria, Ms Toyin Adesola as saying that more awareness about sickle cell was needed to ensure people made the right choices.
She said, “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 when we come together as a group, people will understand us better and I hope that the Red Umbrella Walk held in different parts of Lagos and Nigeria will create awareness in our population and create 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 dream of a person living with sickle cell. You cannot dream of the fact that people will marry away because it is still a choice matter. I told someone that unless malaria is eradicated, you cannot eradicate sickle cell.”
Further commenting on the need to revisit the Sickle Cell Bill, Adesola said, “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.”
A mother of a seven-year-old boy, who lives with sickle cell, Mrs Omowunmi Odumosu said people who live with sickle cell have strong bones and such children are worth caring for.
She pleaded with the government to intervene in the rise in drug prices.
Odumosu said, “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 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 to survive and succeed.”
A medical doctor, who joined the Red Umbrella Walk organised by the organisation to commemorate World Sickle Cell Day, Emeka Nwune, asserted that genotype testing was important for every individual, especially for those who are about to get married.
“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.
Nwune further urged the government to enact and implement policies that would ensure persons living with sickle cell live good lives and enjoy adequate healthcare.
“We need the government’s support. We need policies that will make warriors enjoy good healthcare. We need specialised Health Maintenance Organisation plans and it will take government policies to achieve that,” the doctor said.
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