Anambra Sickle Cell Law Stirs up Hornets’ Nest

NIGERIA ATTEMPTS TO WIPE OUT SCD

  • In 1995, under the administration of Colonel ikechinyere Nwosu, the Oyo State Government issued an edict PROSCRIBING the marriage of sickle cell carriers;
  • In 2011, Senator (Dr.) Ifeanyi Arthur Okowa and Senator Nnenadi Usman presented a Bill for the Control of SCD in Nigeria – sections of the Bill sought to DISCOURAGE sickle cell carriers from venturing into marriage;
  • In 2019, the Anambra State House of Assembly passed a law BANNING the marriage of carriers of the sickle cell gene (trait).

Comments/Reaction From Around the World

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THIS ISN’T SOMETHING TO LEGISLATE! I don’t believe that matters of the heart like marriage should be legislated. It may work initially, but later some people will prefer to be fined or jailed for love. We must remember that in this day and age not everyone marries for children. Children can be adopted if necessary. I think it is not the way to reduce the prevalence of sickle cell disease. Increase awareness, encourage people to know their phenotype and allow them to make informed decisions. Professor Norah Akinola, Head of Haematology, OAUTH, Ile Ife, Nigeria

Akinsete: Criminalizing marriages won’t work!’

WRONG WAY TO GO! Criminalizing marriage between carriers of the sickle cell gene – or any genetic disorder for that matter – does not work.  Studies have shown this empirically. What it does is increase stigmatization and drive the condition in the closet. It also increases fraudulent practices whereby some people actually pay for falsified genotype results just so they can go ahead and marry who they want.

There is indeed need for legislation but one that puts forward comprehensive provisions that address prevention, treatment and care as well as the social issues around the disorder (eg stigmatization in employment)…. including free treatment for children and pregnant women with sickle cell.

Also, legislation that provides for NEWBORN SCREENING for early diagnosis of the disorder in order that prompt prophylactic treatment can be instituted to prevent those complications that lead to premature mortality.

There must also be a comprehensive health policy on SCD which emphasizes genetic counseling for individuals, couples and families.

Dr. Annette Akinsete, CEO, Sickle Cell Foundation (Nigeria), Lagos

Usoro: ‘Prevention better than treatment!’

THE LEGISLATION IS GOOD! Government and other Healthcare Providers bear the brunt of this pathology following matrimony or sexual intercourse of carriers of the sickle cell gene. Legislation is good and futuristic to reduce or eliminate this burden over a few generations. Preventive measures are cheaper for governments and parents.

Dr. Anthony Usoro, former National Coordinator, Non-Communicable Diseases, Federal Ministry of Health, Abuja, Nigeria.

Ihuoma-Ngumoha MD: ‘The Law is welcome.’

WORTHY LAW: The Anambra Law is a worthy step – SCD is as a result of ignorance of old. Now in 21st century, we know better than to bring forth babies to live in perpetual agony. Dr. Nne Ihuoma-Ngumoha, Sickle Cell Enigma Consultants, Florissant, MI, USA

MRS. ONONOKPONO
Ononokpono: ‘The Anambra Law is OK.’

THE RIGHT DECISION: I know we would want to exercise our fundamental human right; we should be careful not to bring in a child who would be deprived of enjoying good health – this will be seen as selfishness. The government has seen the increased birth of SC babies; the same government has seen the plight these babies go through and probably the increased mortality rate. They took the right decision. Deborah Ononokpono: President, Sickle Cell Support Network, Calabar, Nigeria

AM IN SUPPORT: I fully support the Anambra Law. I am working out something similar for my state and by extension the nation. One step at a time. The responses am getting based on these opinions from prominent men and women in our society is amazing and encouraging. Many people don’t know this angle to sickle cell. Pastor Emmanuel Dickson Ibekwe, Chairman, DabMa Sickle Cell Foundation, Lagos, Nigeria


WHY MAKE A CHILD SUFFER? Having children with sickle cell when the parents are aware is criminal. Their blind love will see clearly they start spending months in the hospital with all their resources. The love victim who is going through all the pain will CURSE them in the end.

How can someone willfully bring a child into the world to suffer? Adedamola Adeyemo, Legal Practitioner, Lagos, Nigeria

WELCOME DEVELOPMENT: By the law of averages, some marriages between carriers of the sickle cell trait end up producing no sufferer. Notwithstanding, for the most part, the dangers of such a marriage are palpable and direful. For this reason, and, the need to clean out sickle cell disorder from our society, the law is a welcome development.

Ugochukwu Ahiarakwe, Founder & Program Director, Society for Healthy Lifestyle

Suleiman: ‘It’s discriminatory!’

IT’S DISCRIMINATORY! This kind of legislation /policy is a discriminatory and an ineffective way of preventing sickle cell anaemia. Suleiman Olatunji, Founder/CEO, TunMicro Sickle Cell Foundation, UK

Nigeria presently has the largest burden of sickle cell disease in the world. I think it’s time to have a law forbidding such marriages and Nigeria of course should spearhead it. Olowodola Benjamin, Sickle Cell Support, Abuja

COMMENDABLE GOAL, BUT

The goal is commendable but it’s a crude way to eradicate sickle cell anaemia. The Law stigmatises carriers of the sickle cell gene no end!

Philomena Aladei, Sickle Cell Health Watch, Yenagoa.

Elizabeth Nneka Anionwu, CBE
Anionwu: ‘Unworkable Law.’

UNWORKABLE, DRACONIAN LAW: Sickle cell is a major public health issue and requires the relevant education and health care resources. So I do understand the pressure it brings to bear on families and society in general. However, rather than this draconian, stigmatizing and unworkable legislation, I would have preferred to see a major education drive about sickle cell, free and reliable sickle cell testing together with non-directive genetic counselling and specialist sickle cell clinics and support for all affected with the condition. Professor Dame Elizabeth Nneka Anionwu, CBE Patron of Sickle Cell Society UK, First ever UK Specialist Sickle Cell Nurse Counsellor.

Dr. Abraham Idokoko
Idokoko: ‘Hearty Support.’

HEARTILY SUPPORTED, BUT … I heartily support the Anambra State Law, provided that it is enforced along with an effective mass re-orientation campaign to ensure that the public do not misconstrue the law to mean oppression and stigmatization of people living with SCD/SCT.
We must not make the mistake of thinking that the new law will eliminate the inheritance of sickle cell gene. I don’t see that happening at any point except, carriers are banned from raising children at all. And that is certainly impossible. The main measure needed is persistent and effective health education.

Dr. Abraham Idokoko, physician and population health expert, Lagos

LEGISLATION HAS NEVER WORKED ANYWHERE! I am aware of the bill being passed in Anambra StAte. My immediate thought is that is does not appear to be proportionate. In contrast, in my opinion it feels rather draconian. I am not aware of any evidence that this approach will work or has worked in other countries where there is a high prevalence of SCD. Resources on education and awareness and access to appropriate treatment may have been a more appropriate step in the first instance.

John James, OBE, Chief Executive, SICKLE CELL SOCIETY UK

JUST PRESENT THE FACTS: You simply cannot prevent adults from voluntarily choosing their life partners. It is against fundamental human rights. The whole essence of premarital genetic counseling in a disease like SCD is to present all the facts to intending couples and allow them to make an informed choice.

Professor Adekunle Adekile, University of Kuwait


Tunji-Ajayi: ‘Sending people to jail may be counter-productive.’

LET’S FOCUS MORE ON AWARENESS: Rather than sending carriers of the sickle cell trait that marry each other to jail, I propose we intensify education and  awareness. When we do this, we are providing people with the opportunity to make informed decision. Everyone has the right to make their own procreation decision and providing counseling will go a long way in ensuring people make the best decision for themselves and their community.

It will also improve their psycho-social health as they feel empowered to make their own procreation decisions.

Sending people to jail may be counterproductive.

Lanre Tunji-Ajayi, President/CEO, Sickle Cell Awareness Group of Ontario (SCAGO)

Tawo: ‘Right step, right direction.’

I think this is a right step in the right direction. As much as people should have the right to be married, there should also be the consideration that another persons health does not suffer as a result of the exercise of their right.

Our liberty/freedom stops where another persons freedom begins.

Onor-Obassi Egim Tawo Esq. CEO/Founder, Okares Sickle Cell Foundation, Calabar.

ANAMBRA, CONGRATS! Kudos to Anambra State! One day, sickle cell prevalence in Africa will plummet to ZERO. The Law is Ok. My congratulations to Anambra State.

Djikpo Beni, Afrique Zéro Drépanocytaire, Togo

TOTALLY AGAINST! I disagree with this law. You just can’t legislate matters of the heart! Let people know their genotype and make an informed decision.

Bernadette Moraes, SCD Advocate, Zambia

IT’S A SHAME! Reading the above article made me violently sick and very furious that a stupid Law can be allowed to pass through in this day and age. What happened to educating the nation? SCD patients are already stigmatized in the society due to lack of understanding.

It’s ironic that a government that is supposed to be full of educated people is making primitive decisions. What a shame.

Anonymous, London, UK

Professor Konotey-Ahulu: ‘Wicked Law’

WICKED LAW! Those Lawmakers in Nigeria must be told in no uncertain terms that it is a wicked Law. What we have here is Population Control being turned into law.

Professor Felix Israel Konotey-Ahulu, Accra, Ghana

Faloye: ‘A welcome development!’

WELCOME DEVELOPMENT: It’s a welcome development to control the breeding cycle of sickle cell children. When couples get married or go into a relationship knowing they are genetically incompatible, it becomes willful procreation of sickly babies. Stories abound. This tide must be curbed via a drastic measure such as this.

– Olutayo Faloye, Founder, DISCON (Disability & Sickle Cell Organization of Nigeria), Lagos, Nigeria

BAN NOT THE ANSWER: Anambra State is clearly discriminating against people who are carriers of sickle cell gene. In this world babies will be born with or without a sickness, that’s how God created this world. Education is paramount: People need to be enlightened about Sickle cell. A ban is not the answer.

Tola Dehinde, Punch columnist, UK

SUPPORTED … MY OWN LITTLE OF CURBING SCD IN MY FAMILY: Sickle cell disease has become a pandemic in Nigeria.

It is very expensive to manage and puts a lot of stress on the sufferers and their care givers.

Even the bone marrow transplant option carries a lot of risks. When successful it does not convey immunity on the unborn child and the procedure causes sterility unless eggs and sperm are stored before it is done.

Pregnancies carry high risks for females with SCD.

Other debilitating complications like strokes, kidney failure, AVN and so on are medical nightmares that put a lot of financial and psychological strain on the family.

PREVENTION IS BETTER THAN CURE! So why don’t we support legislation to prevent carriers from consummating unions that will continue to increase the incidence of people living with the menace?

I have in my own little way curbed the prevalence in my immediate family by counseling my three daughters who are carriers of the trait and one with sickle cell anaemia not to date other carriers. They are all married with husbands who are AA genotype.

Heaven helps those who help themselves.

Mrs. Falilat Funmilayo Salami, retired nurse/midwife, Lagos

Ogunrinde: ‘Choose your partner wisely, bring happiness home!’

BRING HAPPINESS HOME! Since the people going into marriage are AS & AS and are both healthy, when they bring forth an SS child, they become dis-illusioned, it is necessary for that law to be passed as the Bible’s says, “My people perish for lack of Knowledge”(Hosea 4:6).

In marriage, choose your partner correctly and bring Happiness home.

Venerable Engr O I Ogunrinde, Chairman/CEO OLUWATOKI OLUSEYE  FOUNDATION(TEE-KAY FOUNDATION) Ibadan.

Tussy-Obi: ‘It’s the way to go!’

WAY TO GO: I stand with the pace setting State,  Anambra State. Why bring into the world children who will suffer unduly for no fault of theirs. If lovers or couples to be would decide to be blind, the government should intervene. I’m all for it 100%.

Barrister Afam Tussy-Obi, outgoing President, Rotary Club of Agbara, District 9110 Nigeria

Ayinde: ‘It’s a positive step.’

POSITIVE STEP: It is a positive step. I hope it helps the lawmakers at the Federal level do the same.

Aduralere Deborah Ayinde, Gasbol Pipe Entertainment, Shagamu, Nigeria

DETESTABLE NON-SOLUTION! I think this is a grossly detestable non-solution that will fail in the long run. I suggest those who came up with such a ridiculous law be themselves penalised!

Tosin Coker, author, Genetic Nemesis HbSS: Sickle Cell Anaemia all about?

A STIGMATIZING BILL: I am pro choice. And I believe everyone has a right to decide what they want and who they want to marry. SCD incidence is on the rise mainly because of ignorance.

Energy should be put into creating awareness right from primary school – SCD should be part of the curriculum in the educational system. If I fall in love with someone with the Genotype AS, I will get married!

The bill is stigmatizing, to say the least.

O. Dabota, Sickle Cell Awareness Forum, Port Harcourt

BARRISTER AYAVGA: ‘The Law is unconstitutional!’

UNCONSTITUTIONAL LAW! A lot of people are ignorant of this whole disorder and until government has raised enough awareness, it is unjustifiable to mete out punishment to erring citizens. I don’t feel it is a constitutional to pass a Law like this. Government should actually find a way to sensitize the public rather than punish carriers of the sickle gene….

Sewuese-Ter Ayavga, Lagos, Nigeria

IN TOTAL SUPPORT: I am in total support of the bill. If we are really serious about eradicating sickle cell anaemia in Nigeria, this is one of the many viable ways of achieving this. The time to act is now!

Dr. Medupin Patricia F., Hope Aglow Sickle Cell Clubs, Lokoja, Nigeria

Worthey-Diaz: ‘Nigeria takes giant step in backwards!’

NIGERIA TAKES GIANT STEP BACKWARDS! Nigeria should be on the front lines for sickle cell research and education but decided to take a huge back step. We should be giving sickle cell warriors every opportunity the world has to offer. Life is difficult enough without having the government take away basic human rights. 

Ashley Worthey-Diaz, New York, USA

Ashiraf: ‘It’s an ugly law.’

IT’S NOT NICE: I think it’s ugly for people to come up with a law banning carriers from marrying another carrier. We very much want to achieve a sickle cell free generation but we shouldn’t achieve it by iron fist and violating human rights. And we should differentiate between getting marriage and bearing children.

Sebandeke Ashiraf, International Sickle Cell Advocate (ISCAY) of 2017, Director, Sickle Cell Network, Uganda

Alkhadem: SCD prevalence almost down to zero by education and awareness

LAWS FIGHT PEOPLE, NOT THEIR ILLNESSES: In 2010, Bahrain wanted to tread this carrier marriage ban route to stamping put sickle cell, but we resisted. It was against human rights, and stigmatizing. Law does not fight a health condition, it fights human beings. We eventually co-opted grandmothers into the awareness campaign. Today, the incidence of SCD in Bahrain is moving towards zero.

Zakareya Alkhadem, President, Bahrain Sickle Cell Association, Bahrain

IT’S A GOOD IDEA: Then Anambra bill is a welcome idea if it can also be passed here in Lagos State. Every court and  religious institutions joining two people together should check their genotype themselves before joining them. How I wish this was done at the registry and church where I wedded then!!!

Mojisola Joshua, Lagos

SENSIBLE LAW: The Government move makes sense. There is no sense in willfully making life miserable for your offspring if you knew the consequences of your action. It is a crime to do that, and crimes must be punished to deter others!

Olaniyan Olajide, Lagos.

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