Joy as Anambra state assembly passes sickle cell anemia bill

If the Anambra State Sickle Cell Disease Control and Eradication Law 2019 just passed by the state House of Assembly is eventually signed by Governor Willie Obiano, it would save many couples some agonising moments as OKEY CHRIS reports.

 Sickle cell anemia is a group of inherited red blood cell disorders that effects hemoglobin, the molecule in red blood cells which delivers oxygen to cells throughout the body. Investigation shows that people with this ‘hereditary’ disease often referred to as Sickle Cell Disorder (SCD) patients or ‘sicklers’ possess a typical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle or crescent shape.

 This could also be the reason in modern times, intending couples are being advised to go for a laboratory test to discover their genetics combinations. The human genotypes are AA, AS, AC, SS. AC is rare and abnormal like AS. According to medical experts, it is normal for AA carriers to marry AA or any other genotypes carriers, but those with AS, AC or SS must not marry because doing so could amount to reproducing sickle cell anemia-prone children.

 Obviously, the life-span of SCD patients are usually cut short in most countries in Africa including Nigeria due to societal stigmatisation, poor diets, poor health system, among others. The World Health Organisation (WHO) reports that in the African region, majority of children with the most severe form of the disease die before the age of 5, usually from an infection or severe blood loss. The global body added that in countries like Cameroon, Republic of Congo, Gabon, Ghana and Nigeria, the prevalence is between 20% to 30% while in some parts of Uganda it is as high as 45% due to the absence of enlightenment and in some cases non compliance.

To reduce the effects on the society and SCD patients, many laws have been made by both international, national and states governments. For instance, on December 20 2018, US President Donald Trump signed into law a bipartisan bill aimed at fighting sickle cell disease. Nigeria signed it into law many years ago, and many states of the federation had domesticated it. Anambra state joined the league on April 30, 2019 as the state House of Assembly, passed into law, a bill to repeal and re-enact the Anambra State Sickle Cell Disease Control and Eradication law 2019.

Introduced in the chamber in 2017 by the member representing Anaocha State constituency II, Hon Charles Chukwuma Ezeani and 15 other legislators, the bill came into force on April 30, 2019 to repeal that passed in 2002 by the 2nd assembly and assented to by the then Governor Chinwoke Mbadinuju.

 Reading some amendments to the bill before passage, the sixth assembly speaker, Rt Hon Rita Maduagwu, announced that four new paragraphs were inserted into it. Blueprint learnt that the new law, if assented to by Governor Willie Obiano, would make it mandatory for intending couples to present ‘sickle cell status’ certificate issued by a qualified licensed medical laboratory scientist before any church can join them in holy matrimony.

Similarly, the bill gives the state ministry of education the opportunity to introduce genetic education at secondary and tertiary institutions, back the state ministry of health to monitor its compliance across the 21 local government areas even as it also provides that only professionals should treat such patients in time of crises.

Blueprint also learnt that the bill provides for the employment of qualified SCD carriers in government institutions without discrimination, and also guarantees their fundamental, social and political rights as well as prevents spreading the disease.

The bill stipulates further that no parent, guardian or group shall give out a maiden in marriage without verification of a qualified Sickle Cell Disease Prevention Certificate. It also provides that no religious body or registry shall perform holy matrimony without the verification of a qualified doctor, adding that whoever contravenes the provisions shall be guilty of an offence and liable on conviction to the fine of N200, 000 or imprisonment to a term of three years or both.

 Speaking to the newsmen, Hon Ezeani, said, “I had an opportunity when I was young to live with a family where almost all the children were living with sickle cell disease and in my very presence all the male children died. Some of the girls also died. So with that, I felt I was living with sickle cell disease. So, when I came to the house in collaboration with the association of people living with sickle cell, I had to align myself with them and came up with repealing an existing law to take it to the point of getting it eradicated.”

Ezeani added that the bill is life-saving which will put a final stop to the notion that love is blind, the reason for which, he said, couple whose genotype don’t tally marry and keep having children with sickle cell disorder.

 To the national coordinator, Association of People Living With Sickle Cell Disorder (APLSCD), Mrs Aisha Edward, “The bill would help SCD patients a lot because they go through a lot of discrimination, experience marginalisation in virtually every sphere of their lives and existence as human beings. They are not given jobs, with employers chanting excuses of how they cannot efficiently carry out tasks that are assigned them. How they are physically unfit and could die any minute.”

She said further, “Some unavoidable evils that come with the sickle cell disorder like ulcer of the leg can really mess up appearance and employers equally use that as grounds to deny such persons their employment right and this kills their self-esteem. Women living with the disorder are seen as ill-suited to get married as they may lose a lot of blood and die during child birth, their husbands perceive them as romantically dysfunctional, hence cheating on them. Women also take undue advantage of their husbands living with the disorder because they know they are incapable of getting physical with them. We expect to record more positive disposal of the Governor Willie Obiano’s administration towards the full implementation of the Law.”

Unfortunately, the passage of the bill into law by the state assembly turned to a day of mourning for Mrs Edward, a member of APLSCD, the organisation that had been crying for its passage. One of their own, a 15-year-old Chidozie Nwankwo, who had been battling with a stroke that kept him bedridden for some months, died some hours later.

According to the group’s national coordinator, Nwankwo, who hailed from Ufuma, Orumba North LGA, was the only son of his widowed mum. “He was admitted in a private hospital on Monday April 29, 2019 and during the passage of the sickle cell law the following day, I was called to send them money for blood transfusion which I transferred eletronically to the mother, Mrs Elizabeth Nwankwo. Chidozie finally died in the evening of Tuesday, April 30 after blood transfusion,” she said.

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