Sickle Cell Disease is one of the most prevalent public health issues in Nigeria, which is known to have the greatest number of sickle cell disease patients per country in the world.
The American Centre for Disease Control and Prevention (CDC) states that, “Slightly above 300,000 babies globally are born with severe sickle cell disease. Seventy-five percent of that number, 225,000, are born in Sub-Saharan Africa. Nigeria carries 66% of the burden in Sub-Saharan Africa, with a total of 150,000 babies born with severe sickle cell disease annually. Nigeria also bears 50% of the global burden.” This means that, globally, for every two babies born with the sickle cell disease, one is a Nigerian.
Two Nigerian senators are sponsoring a bill that would make it mandatory for couples to get genotype testing before they can get married, and before new births can be registered. The bill has passed the second reading, and is scheduled for public hearing.
Senators Ogembe (at right) and Omo-Agege (at left), who sponsored the Compulsory Haemoglobin-Genotype Screening Test Bill
Sponsored by Senator Ahmed Salau Ogembe (Kogi Central) and co-sponsored by Senator Ovie Omo-Agege (Delta Central), the bill is titled, “The Compulsory Haemoglobin-Genotype Screening Test” Bill. According to the bill’s sponsors, its objectives are threefold; to establish a clear legislative framework for effective management of sickle cell disease; to avoid human anxieties, pains and deaths associated with the disease and; to improve the lives of citizens who live with it.
Sickle–Cell Disease (SCD) is a genetic disorder that affects the haemoglobin within the red blood cells. It causes recurrent pains and complications that interfere with many aspects of a patient’s life including education, employment and psychological development. It is a life-long illness, meaning that a person with SCD will likely suffer its complications and recurrent pain for life. These effects are more manifest and often more severe when the condition is not properly managed.
Research has shown that only 5% of children born with SCD live past the age of 10 in Nigeria. In parts of the world where care is available for the condition, such as the United States, the life expectancy of a person with SCD is 40 – 60 years. This was not always the case. For instance, in 1973, the life expectancy of a SCD patient in the US was 14 years. What seems to have made the difference in that system is legislation making genotype testing compulsory, as well as SCD management programmes.
Senator Ogembe pointed out at the second reading of the bill that, “Every State in the U.S.A and the District of Columbia require that every baby is tested for SCD as part of their new-born screening program. Ghana and Togo also have screening programs for new-born babies.”
He said the heart of the bill was to address the prevalence of SCD in Nigeria. “This Bill is a direct response to Sickle Cell Disease, a disease that is no respecter of status and position,” he said, adding, “When it comes into a poor home, it worsens their plight; and when it comes into a rich home, aside from depleting their wealth, it wrecks emotional havoc. If we achieve more effective management of SCD by this Bill, then we have played our role well as our people’s representatives.
Senami Ohiomokhare of the Jephthah Ohiomokhare Sickle Cell Foundation and Mrs Tamara Ahmed Ogembe at the launch of a Campaign to raise awareness about the Genotype Testing Bill. The campaign is titled “What’s Your Type?”
He noted that Anambra in 2002 enacted a law mandating intending couples to undergo SCD testing before marriage, but pointed out that there is no uniform law on Sickle Cell Disease in Nigeria. “This bill fills that lacuna,” he said.
According to a Vanguard Nigeria report, in a statement last year to mark Sickle Cell Day, Anambra State Governor Willie Obiano reportedly said that his government would implement the State’s Sickle Cell Law. The report stated that couples who violate the law “would be denied certain privileges by the state government, adding that involving the churches would ensure strict compliance to the law. The governor said the state government would set up sickle cell clinics in the three senatorial districts of the state with state- of- the- art facilities and explained that people living with sickle cell disorder would be treated free of-charge under a Health Insurance Scheme that would be launched in the state soon.” Anambra State signed its Health Insurance Bill into law in June of this year, and has earmarked N200m for its Health Insurance Scheme.
The Jephthah Ohiomokhare Sickle Cell Foundation is raising awareness about the genotype testing bill.
The Jephthah Ohiomokhare Sickle Cell Foundation in Abuja has partnered with Mrs. Tamara Ahmed Ogembe, wife of Senator Ahmed Ogembe, to raise awareness about SCD, and about the Bill. The Foundation was co-founded by Emmanuel and Senami Ohiomokhare, in memory of their first son Jephthah, who was a Sickle Cell Warrior. Jephthah Ohiomokhare passed away this year, at the age of 15. The Foundation and Mrs. Ogembe are currently advocating for young people to be knowledgeable about their genotype under the campaign #WhatsYourType?
Senami Ohiomokhare said the Genotype Test Bill is important because “it is big on prevention, making people go for compulsory testing. We have found out that people do tests and sometimes it comes out false, so the bill also ensures that people do their testing in government owned labs, so that the tests can be verified. The bill will also enforce that children from birth are screened and registered with their genotypes so that government can track children with sickle cell disease and make care and management of SCD available early.”
She said one major concern not addressed by the bill comes from those caring for or living with SCD. “The bill does open up a lot of other issues. There are people already living with SCD and they are more concerned about their current care. Medical personnel only treat them with general knowledge, and sometimes they accuse them of abusing their pain medication or pretending to be in pain. Most doctors are not trained on sickle cell management. We need to ensure that those living with sickle cell disease can access the specialist care they need. This is where hematologists come in. Right now in Abuja we only have one hematologist. We should have at least four in Abuja in secondary and tertiary health institutions.”
Ogembe and Omi-Agege’s Bill has 6 sections. Sections One and Two are on citations and requirements for SCD Testing for intending couples and new born babies. Section Three lists out the responsibility of certain persons, including registrars of marriages, and ministers in licensed places of worship, to advice and counsel intending couples on SCD testing before solemnization of marriage. Section Four is on offences and penalties under the Bill. Section 5 is on the responsibility of some government institutions and professional health bodies to sensitize the public about SCD testing under the Bill. Section 6 is the interpretation section.
The Compulsory Haemoglobin-Genotype Screening Test Bill is hinged on two existing laws in the National Assembly, namely, the Marriage Act and the Births, Deaths e.t.c. (Compulsory Registration) Act.
The bill has passed the second reading, and is slated to go to public hearing after the Senators’ recess.
Off course, sickle cell disease is one of the major public health problems in Nigeria. So, having the bill with good creation awareness, especially to intending couples is very encouraging and the future children would be free from the disease by the grace of Almighty Allah.
Once again we sincerely appreciate the initiators of this bill and we also wished them all the best.
EXCELLENT INITIATIVE
This is long overdue.
Well beyond a mandatory testing is the need for information on the disease. The issue really is to make people aware of the heightened risks when the AS genotype marries another AS genotype. This is an area that requires a lot of cooperation between the government, civil society groups -especially religious- to curb the process of the AS/SS genotype marriage without making the carriers open to unguided public shunning as happened to other people such as the HIV sufferers.
Nice initiative. SCD is very distressing for the patient, parents, siblings and attending medical personnel, so any initiative to reduce its incidence in Nigeria will be welcome. Let us hope it is backed by excellent counseling and treatment services. The rights of the intending couple to marry the person of their choice will also have to be respected at all times.
Availability of reliable SCKLING TESTS FOR ALL NIGER IAN CHILDREN before AGE 5!
Your Comment
A really laudable project, but one that goes in the same direction that other bills had gone before now. It’s true that Nigeria has the highest burden of SCD in the whole world, which means that at least five million people are alive and live with it while another thirty to forty million carry the trait.
How can ten or so people rise up to protect five million people, or speak for them, where are the rest of the people? I believe that if the Voice of the people affected by this disorder are raised in unison, there would be a better response. Dear Mr Senator, you still need to go one step higher.
I was born with the disorder over fifty eight years ago and always watch people who want to ‘speak’ for me, but look down on me and think its beneath their dignity to associate with people of my type and the millions of other unfortunate people who need the intervention of a very uncaring nation.
Please mobilize the individuals themselves, call a meeting or set up a page where affected individuals can sign a petition to the Government. thank you.
You have spoken well.
I am concerned that though it sounds good, forcing a compulsory genotype test may be counter-productive. It may just be like forcing people to do compulsory HIV test and likely to encourage more discrimination and stigmatization of persons living with SCD. Why not make genetic counselling/sickle cell education compulsory for all especially pre-weds? Awareness is key.
DR AKPA
It is an infringement on the fundamental human rights of the individual to privacy of his medical hsitory. Even HIV is not madatorily tested except in pregnancy and even here apropriate counselling is mandatory before tesing. Who will pay for this test? Is it the government? Will these senator apropriate the funds for it in their meagre health budgets?
The NMA should rise up to this challenge and do everything possible to stop its passage.
I wish , I am the person responsible for this decision I would have signed it with an immediate effect , but I hope our noble representatives will not delay in doing that and make effort to put it into action as we know delay of even a second definitely will increase the burden .thanks for this initiative.
I have lost a few friends to SC . This is a great piece of legislation and commend both senators and all those lobbying for it and hope it becomes law soon.
One thing I feel we are getting wrong is this.
I feel people who are carriers should be told the truth and aware of their genotypes. Advice them to break up, and also give them other options like adoption, Medically there is PGD pre implantation genetic diagnosis, CVS ways of preventing the traits from continuing by preselecting before putting in the womb of the wife why don’t government set up labs and make that cheaper and research on it. We can’t have a problem and our way of preventing it is to prevent people who love each other from marrying, look at rhesus factor a medication as be created for it. If we pay more attention to technology and research, we can make waves in this area and that might even become what Nigeria is known for, but no we always look for the easy way out.
I know some hospitals do PGD in Nigeria but due to its expensive nature people are not able to afford it.
That what they should be looking into how to make it cheaper how to make the procedure cheaper better and safer and improve the chances of it working for couples who decide to go the Israelite journey.
There is also bone marrow transplant for Sickle cell patient which I don’t think is done in Nigeria till date. Yet we have the highest number of sickle cell patients shouldn’t our country be the centre where this procedure is done and more search done on it, genotypes of sickle cell patients can be changed buy transplant of bone marrow of healthy sibling or match, we don’t have to watch people suffer when we can improve technologies.
That’s my own take most people are not happy in their marriages because they had to marry AA they don’t love, why allow this when technology is already here and can be improved on?