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More awareness, research needed to stem sickle cell disorder

This year’s World Sickle Cell Day, recognised by the World Health Organisation (WHO) and the United Nations and celebrated on June 19th of every year,…

This year’s World Sickle Cell Day, recognised by the World Health Organisation (WHO) and the United Nations and celebrated on June 19th of every year, was marked with calls on stakeholders to consider Sickle Cell Disorders (SCD) as a global health issue that requires attention in the global health care system.

Experts describe SCD as a chronic, lifelong inherited disorder, affecting millions of people all over the world. It affects haemoglobin production, causing the red blood cells to be sickle-shaped, hence the name. This results in the blockage of the small blood vessels thus causing severe pains and complications in the blood system. According to the experts, this pain, which characterises the life of a sickle cell patient if not properly handled, can result in severe complications, organ damage and possible death in severe cases.

Of the 300,000 estimated cases of children born annually with SCD globally, about half come from Nigeria and of this number, half may not survive up to five years due mainly to accompanying infections and ailments that may further complicate the patient’s condition.

In marking this year’s sickle cell day, the African Health Organisation (AHO) said it aimed to focus on increasing awareness of SCD; getting health institutions to develop programmes and operation of special treatment centres; and premarital screening to reduce transmission of SCD from generation to generation.

These objectives are commendable because although SCD has been with us for some time now, very little information about it has been disseminated to the general public. This has led to stigmatisation. of the patients as well as the misconception that it is contagious. In some cases, employers even deny SCD patients employment or discriminate against them at the workplace.

It is not encouraging that with the highest record of SCD patients globally, Nigeria has lagged behind in creating programmes that would address the issue satisfactorily. Apart from absence of comprehensive awareness campaigns, there are also little or no research institutes for the study of SCD to increase our knowledge of the ailment and how to tackle it. Again, the pharmaceutical remedies and medication for the ailment are hard to come by due perhaps to the fact that the major pharmaceutical companies do not consider it serious enough, or less commercially rewarding, to commit funds to producing and marketing the medication. Such companies prefer to concentrate their efforts on signature ailments with global prominence and attention like HIV, COVID-19.

As a first step to reducing its prevalence, there is the urgent need for governments to make testing for couples before marriage compulsory.

In this regard, we commend the Kano State government for taking the lead by legislating compulsory genotype testing for would-be couples.

Daily Trust calls on both federal and state governments to wake up to the danger of the incidence of SCD in the country. It is certainly not flattering that Nigeria has the unenviable record of the highest number of SCD cases in the world. It is even more disheartening that despite this, Nigeria has not done enough to close the considerably wide gap that exists in implementing programmes and policies that would bring the ailment under control and management.

We, therefore, call for an all-encompassing national policy on SCD. Additionally, the National Orientation Agency (NOA) should be tasked to provide platforms for national awareness on SCD and its effects on our daily lives. We should work in collaboration with WHO and AFO and key into their awareness and technical programmes.

Similarly, the government must upgrade the facilities in our hospitals, especially those departments handling cases of SCD.  There is also the need for continuous training for health staff to enable them to identify and provide pro-active medical care and counselling of patients so as to guide them through their paces with the ailment.

Our universities must also key into the collective national effort on SCD. Indeed the universities can be both centres of research and treatment as they are doing now on other similar major ailments. This will not only help the country to successfully tackle the challenge of SCD, it will also enable us to join the global effort at reducing if not totally eradicating the ailment.

 

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