Nobody wants to fall sick or contract a disease. Nevertheless, falling sick or contracting a disease is a fact of life. Some sicknesses or diseases are common; some are not so common and some are a rarity. Again, some have certain perceptions, assumptions and beliefs attached to them. Matters are even made worse when the ignorant, the superstitious and the semi-literate twist the facts of a health issue to suit their own notions, and fiercely want to convince others, irrespective of what science (diagnosis), research and even conventional wisdom say. Add the fact that some diseases are costly to treat, spread very fast, signal (prima facie) a loose lifestyle, or lack of discipline.
Accordingly, some diseases have become ‘high-profile’ simply because people view them from a perspective that has to do with their own jaundiced perceptions, assumptions and beliefs, and they have certain characteristics that stand out because they generate anxiety and instil fear in people. The end result is that some diseases carry with them instant stigmatisation! Examples include HIV/AIDS, SARS/COVID-19, sickle cell anaemia, tuberculosis, cancer, and Alzheimer’s. Hence, people don’t want to be associated with them even when diagnosis has proved they have them. Consequently, they try to keep it as secret as they can. They become secretive and reclusive as soon as they are diagnosed with these diseases. That is worrying enough. But what is more worrying is the attitude of most other entities (individual and institutional health care providers, health ministries, health departments and agencies of government, relations and friends and colleagues, and the general public) towards the high-profile disease sufferers.
It appears that people who are inclined to ‘hide’ or ‘disappear’ after testing positive for a high-profile disease in Nigeria are often left like that with no serious efforts to follow them up. Many of them have no choice but to hide and disappear because, come to think of it, they have the misfortune of double stigmatisation; a definitely heavier burden of stigmatisation. It is a crushing burden! How many people can endure that in this part of the world where the level of stigmatisation is so high? Take for instance a gay. They are already stigmatised because of their sexuality. And now, if any of them has an HPD, especially HIV (to which a homosexual is said to be easily susceptible), it is another trouble for the person! He will hide; he will disappear after testing positive for an HPD.
If there is an inclination (and there will very likely be) to go out of circulation after being diagnosed with a disease which is likely to attract stigmatisation, the person concerned first needs counselling at that diagnostic stage. From the available information, there is not enough of that. The person simply moves out of the public glare and would not want anybody to know their status! But if there had been enough of counselling, the person could confidently move to the next level; the treatment level. At that level, they should be encouraged to start and continue with their medication and will be clearly told the consequences of not continuing with medication. There is no evidence that much of that is being done either, and so they drop off after that second-level encounter. For those with infectious HPDs, there is a need for close monitoring and especially contact tracing to know who the sufferer had come in contact with, or had anything to do with so that they too will be encouraged to come for testing, and if found positive, undergo a treatment regime. There is no evidence much of that is being done. High-profile disease sufferers are let loose, and the people they had infected are at large!
And so there are problems of the HPDS not being sufficiently counselled about the disease that afflicts them; the problem of not being encouraged to start and continue with medication; the problem of health workers and other persons and entities that have something to do with health not doing enough to cut short the spread of the infectious diseases. There is a lot of laxity, indifference, nonchalance, detachment, disregard, name it, and, without doubt, a whole lot of implications for these kinds of attitudes towards the HPDS. The secretive and reclusive HPDS do not have hope or encouragement to continue living. They feel they are on their own, that they don’t have anybody who understands them sufficiently to care. They see hostility and a lack of love and care all around them.
When HPDS hide and disappear, the nation is losing; low productivity, more avoidable deaths, reduction in the labour force, quick and uncontrolled spread of diseases, spending more than should have been the case, disorganisation of families, and so on.
To begin to solve the problem of the secretive and reclusive HPDS, and hence make the nation healthier, everybody or entity at the level of testing/diagnosis, treatment and consequential activities must sit up, and do what they are supposed to do in terms of following up on these people so that they know that having a HPD is not a death sentence, that it is possible to survive, to live long and still be as productive as possible. They should be tracked and up-to-date statistics about their number and health status should be available. HIV/AIDS, for instance, is no longer a death sentence. There is medication to reduce the viral load consistently so the sufferers can live a normal life. There is no reason HPDS should be allowed to hide and disappear into a life of misery and die when they should not. The country should prioritise the post-testing healthcare needs of people forced to go out of circulation by external circumstances of their ailment. It is one giant step towards a healthier nation.
- Chijioke Madu is an Abuja-based medical laboratory scientist
