A bill to prevent, control and manage sickle cell anaemia in Nigeria scaled second reading at the senate yesterday.
One of the provisions of the Bill seeks to prevent persons who are carriers (AS and SS) of the diseased gene from marrying other carriers.
The bill, sponsored by Senator Sam Egwu, also seeks to curb preventable massive deaths and avoidable hardships caused by the disease.
This, the sponsor said, will be achieved by placing a statutory duty on the federal government to engage in and encourage the prevention, control and management of the occurrence, spread and effect of sickle cell anaemia.
Thousands of the Nigerians are under the grasp of the deadly disease.
Experts have said the disease prevails in the country because of the wrong matching of conflicting genotypes in marriages and procreation.
Sickle cell anaemia is known for distorting the red blood cells which mostly result in severely painful blood clots and is among the top genetic haemoglobin disorders.
The genetically inherited disease which can also lead to death troubles a little less than five per cent of the global population. But for people whose origins can be traced to Africa, the risk is higher.
While over 300,000 babies globally are born with severe sickle cell disease, 75 per cent of that number are born in Sub-Saharan Africa.
Nigeria carries 66 per cent of the burden in the region, the American Centre for Disease Control and Prevention (CDC) states.
According to a report from the World Health Organisation (WHO), 24 per cent of the Nigerian population are carriers of the mutant gene and the prevalence of sickle-cell anaemia is about 20 per 1,000 births.
Provisions of the bill
Leading the debate, Egwu said the prevalence of sickle cell anaemia in Nigeria has risen to an alarming proportion, yet little is known about it and far little is done about it.
He said the legislation will enable the Ministry of Health to direct, coordinate and supervise the prevention, control and management of the disease.
It will also empower the ministry to accredit reputable public and private hospitals and medical clinics across the country, including the rural areas, to function as accredited participants in the prevention, control and management of the disease in Nigeria, he said.
The bill empowers the Ministry of Health to receive donations, literature and other relevant materials from persons, organisations and bodies or governments and ensure proper utilisation of such resources for the management of the disease.
The lawmaker explained that the passage of the bill will ensure that experts and other stakeholders are committed to the prevention and control of sickle cell disease in the country through adequate sensitisation and counseling to prevent persons who are carriers (AS and SS) from marrying other carriers, while facilitating uniformity and standardisation of care for those living with the disease.
“It will ensure that these campaigns, sensitisation and services are taken to the rural areas across the nation where majority of the citizens are ignorant of this disease and do not carry out the relevant tests to ascertain their genotype before getting married.
“Proper sensitisation of the rural dwellers and accessibility of the blood testing services, which this Bill seeks to enhance, will lead to an appreciable reduction in the number of fresh cases in a short time.”
“It will attract no significant additional cost to the government because it is not setting up any new body or commission; its implementation is to be carried out by the Federal Ministry of Health,” Egwu noted.
“It will, however, lead to achievement of better results through better utilisation of resources, stronger political will, greater mutual accountability and more research in the area of Sickle Cell Disease and these efforts will culminate in reduced morbidity and mortality caused by the disease.”
By passing the bill, he said, “the Senate would have played its part in bringing to an end the unfortunate and preventable hardships and deaths which hundreds of thousands of innocent young Nigerians are subjected to on yearly basis”.
Biodun Olujimi (PDP, Ekiti) said it is time for Nigeria to look inwards to solve some health needs and also support institutions that are doing so.
“Going forward, we need to take serious blood testing for intending couples. We will not allow love take away the best part of our marriages,” she said.
Chukwuka Utazi narrated his traumatic experience after he discovered he could not marry a partner at the time.
“I knew the trauma. After that incident, for five years I didn’t come out of it. So I am speaking from experience and I know how it pains that you have made a choice and you discover that the choice can’t work.
“Because in Africa, we marry for children, we don’t marry for love. A test is done to show the blood group, the genotype before leaving. In the birth certificate of the child, all those things are put in place.
“We should not be waiting for when people want to go and marry, that is when they will start checking their genotype and their blood group, it shouldn’t be,” he said.
A few lawmakers took turns to speak after which the bill passed second reading and was referred to the Senate committee on health for further legislative work.
The committee is to report back in four weeks.