The whole world is eagerly waiting for the mass production of the recently approved sickle cell vaccine introduced in the U.S. Whether or not the vaccine has the endorsement of the WHO is what everyone does not know. SUNNY IDACHABA writes on the reactions about the vaccines.
At last, relief is coming the way of parents and intending couples with the introduction of vaccines capable of curing sickle cell anaemia, a blood disorder (disease) that has caused unprecedented pains to many sufferers and their relations over the years.
It is a known fact that a number of children with sickle cell disorder have died while many who were lucky to survive went through a painful experience of frequent illnesses. Therefore, to individuals with hitherto direct contact with the ailment, what they passed through can only be better imagined than experienced.
Any family with a history of sickle cell patient has unpleasant stories to tell. From visiting hospitals when unexpected to unexpected, untimely death except in few cases. Often times, most sickle cell patients, according to investigation, do not live up to 20 years of age. However, the mystery about the ailment is that any sufferer capable of exceeding that age lives to give the testimony thereafter.
This is why in the recent times religious organisations require a valid medical clearance from intending couples certifying them free of sickle cell disorder (apart from HIV test) before they are joined in holy matrimony. As a result of this, many genuine lovers have parted ways based on expert advice; so, the damage caused by this ailment to many families speaks volumes. This is why sickle cell disease has remained a source of concern to many all over the world.
At last, hope beckons as, according to the United States Food and Drug Administration (FDA), it has approved a therapy called Casgevy made by Vertex Pharmaceuticals and CRISPR Therapeutics for the treatment of sickle cell disease. This is coming as a great relief to many people all over the world as there has never been any validly approved known cure for the ailment until this time.
Also, the FDA approved another sickle cell disease treatment called Lyfgenia, a gene therapy produced by drug-maker Bluebird Bio. The two approved treatments, according to investigation, work by genetically modifying a patient’s own stem cells.
This is the first medicine that uses the gene-editing tool CRISPR to be approved for treatment of sickle cell in the United States and other parts of the world.
According to Dr. Alexis Thompson, the chief of haematology at Children’s Hospital of Philadelphia, who has previously consulted for Vertex, he said in excitement that “it’s been really remarkable how quickly we went from the actual discovery of CRISPR, the awarding of a Nobel Prize, and now actually seeing it being an approved product.”
Before this latest development, the only known treatment for sickle cell disorder was bone marrow transplant. However, it was discovered that adopting that method of treatment was a difficult one due to the risk of rejection by the immune system of the recipient and the inability to get a matching donor.
Sickle cell is a hereditary blood disorder passed from parents to their children that reduces the lifespan of the red blood cells and capable of causing anemia.
WHO’s report about SCD
Records from the World Health Organisation (WHO) said more than 66 per cent of sickle cell patients live in Africa. The report stated further that about 1, 000 children born daily in the region carry the disease, making it the most prevalent genetically-acquired disease on the continent. In Nigeria today, it is one of the most prevalent public health issues, according to statistics from the Ministry of Health.
Research has shown that only 5% of children born with sickle cell disorder live past the age of 10 in Nigeria. In parts of the world like the US where medical care is available for the condition, the life expectancy of a sufferer is between 40 and 60 years. This was, however, not always the case. For instance, way back in 1973, the life expectancy of a sickle cell patient in the US was 14 years. What seems to make a difference in that system is legislation, compulsory genotype testing as well as effective management system?
Attempted legislation
Moved by the psychological trauma this ailment has caused, two lawmakers in the eighth assembly (Senator Ahmed Salau Ogembe (Kogi-central) and Senator Ovie Omo-Agege (Delta- central), made attempt at sponsoring a bill that would make it mandatory for intending couples to get their genotype status tested before they can get married and before new births can be registered. The bill, Blueprint Weekend learnt, passed the second reading, but shortly after that assembly’s tenure ended, nothing was done or heard about it again.
Entitled, ‘The Compulsory Haemoglobin-Genotype Screening Test, bill, its objectives, according to the sponsors, are to establish a clear legislative framework for effective management of sickle cell disease; avoid human anxieties, pains and deaths associated with the disease and improve the lives of citizens who live with it.
Justifying the essence of the bill, Senator Ogembe noted that out at the second reading, “Every state in the US and the District of Columbia require that every baby is tested for sickle cell disease as part of their new-born screening programmes. Ghana and Togo also have screening programmes for new-born babies, so with proper legislation, why would it not work in Nigeria?
“This bill is a direct response to sickle cell disease, a disease that is no respecter of status and position. 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.”
That bill by the two law makers, according to investigation, has six sections.
Sections One and Two are on the citations and requirements for testing for intending couples and new born babies. Section Three lists out the responsibilities of certain persons, including registrars of marriages and ministers in approved places of worship to advice and counsel intending couples about testing before marriage.
Section Four is on offences and penalties as a result of violation. Section Five is on the responsibilities of government institutions and professional health bodies to sensitise the public about the need for testing while Section Six is on what it simply refer to as interpretation.
The bill was hinged on two existing laws in the National Assembly namely: Marriage Act and the Births, Deaths, etc (Compulsory Registration) Act.
Precedent
It would be recalled that in Anambra state under its former governor Willie Obiano, the state government equally made attempt, though futile now, to adopt legislation for intending couples to embark in compulsory genotype testing before marriage.
According to Obiano, his government would implement the state’s sickle cell law which stipulated that couples who violate the law would be denied certain privileges by the state government, as according to him, involving religious organisations was to ensure strict compliance to the law.
Reactions
While applauding this latest development, a parent, Mr. Momoh Oseni, whose only son among three children died at a private medical facility at Benin in 2019 told Blueprint Weekend via telephone conversation that if a new vaccine capable of addressing sickle cell disorders enters the market anywhere in the world, that would be a great relief to many people though a lot of damage have been caused before now.
“I cannot explain how heartbroken I am over the trauma SCD has caused my family, but all I can say is that there is no legislation that can assuage the pain caused by SCD. If the vaccines are available, that would help a lot of people. I personally would get the vaccine and I know many families would be willing to as well. I lost my only son among three girls in 2019. Since then, life has not been the same again,” he told this reporter.
In the opinion of Dr. Marcel Essiet of Excel Clinic in Yaba, Lagos, “In modern medical science, all things are possible. If there could be Robotic Engineering making waves across the globe, it’s not impossible for a new approved SCD vaccine to be introduced into the market. It is however coming too late, but like they say ‘it’s better late than never.’
Raising a valid question, he asked, “But has the World Health Organisation approved for mass production and application of the vaccines? That is another angle to this excitement, to me.”
