The Genotype Test Bill: An attempt to curb Sickle Cell Disease in Nigeria?
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.
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 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.
Originally published at nigeriahealthwatch.com.