HIV/AIDS: When stigma becomes deadlier than the virus
It is common even in early 2017 to read newspaper headlines that go like this: “The deadly HIV/AIDS is still a major public health issue”. An indication that even some reporters and editors still reflect the perceptions of their societies, in so far as HIV/AIDS is concerned and entrench stigmatization.
These perceptions influenced by fear, culminate in the stigmatization of sufferers, despite the progress that has been made with management of HIV/AIDS and the easy availability of information about the disease.
Stigmatization is a global challenge, as most diseases are stigmatized worldwide – from tuberculosis to epilepsy and recently, Ebola.
Since the first case of Human Immunodeficiency Virus Infection and Acquired Immune Deficiency Syndrome (HIV/AIDS) was diagnosed in 1981, persons living with the virus have been stigmatized, in spite of efforts towards awareness creation both locally and internationally. No matter how much education has been done about the disease, stigmatization of sufferers is still a major issue to contend with in the management of HIV/AIDS.
In an interview with ghanabusinessnews.com, Prof. Margaret Lartey, a Specialist in Infectious Diseases and Dermatology (HIV Physician), said most people stigmatize out of fear, making stigma one of the biggest issues that health experts and HIV/AIDS advocates have had to contend with.
Stigma has no advantage she says, “what it does is, it pushes people underground and especially in healthcare, there has been instances where we have treatments but people are so afraid of being stigmatized and would not come and access treatment and therefore end up being sick and dying.”
Prof. Lartey pointed out two major sources of stigma – the internal and external sources.
Internal source of stigma
In this case, she says people living with the HIV/AIDS virus and, or the syndrome, stigmatize themselves. “They feel they are not worthy of joining a group or worthy of doing something and if the person is a mother she feels guilty for infecting her child with the virus.”
Prof. Lartey indicated that there are lots of internal stigma but the ones that have to be dealt with are the external sources of stigma.
External sources of stigma
“External sources of stigma come from all aspects of our lives and that is why as part of the national response to HIV/AIDS we have a multi-sectoral response.
In education, there are instances where teachers may lose their jobs because they are HIV positive or a student may be expelled from school because of the virus. When this happens, it’s going to cost the child his or her education and the teacher, his or her job and an income,” she observed.
She stated that there are instances where people with the virus are tested without their consent and occasionally their test results which are supposed to be confidential are leaked to others.
Additionally, some health workers who are supposed to have more knowledge about HIV/AIDS refuse to care for patients infected with the virus for fear of being infected while caring for them, she pointed out.
“Those patients are sometimes put in some corner in the ward and are avoided,” she said.
When it comes to other sectors like the entertainment industry, “some musicians do not want to perform with others and audiences do not attend some shows because the artiste is living with the HIV virus.”
Effects of stigmatization on persons living with HIV/AIDS
Prof. Lartey cited loss of basic human rights as one of the biggest effects of stigmatization on persons living with the virus: loss of employment, lack of food and no access to education.
“We have food vendors who refuse to sell food to persons living with HIV/AIDS: we have landlords/landladies who eject tenants because of their positive HIV status.
“There are even some compound houses where neighbours do not share bathrooms and toilet facilities with persons living with the virus for fear of being infected and that is a basic human right: the ability to share a washroom facility,” she added.
Stigmatization among sufferers
A more shocking revelation is the fact that even persons living with HIV/AIDS stigmatize among themselves.
“We are even amazed to find out in our practice that those who are infected with the virus and, or the syndrome and are now better tend to stigmatize and are unwilling to associate with those who are very ill,” Prof. Lartey said, stressing that stigma is pervasive and must be dealt with at the personal, group, and national levels.
Working to mitigate stigma of persons living with HIV/AIDS
“In Ghana, the Ghana AIDS Commission (GAC) spearheads most of the initiatives to mitigate stigma: It does a lot of education and workshops. The Commission came out with the work place HIV policy and also an HIV draft to help address issues of stigma.”
The Commission a few years back ran adverts on stigma just to get the public to learn to live with people living with the virus.
She also acknowledged the efforts of the various health institutions playing crucial roles to reduce stigma and that although the level of stigma has dropped it has not been totally dealt with.
Worldwide, one of the things that were being done about stigma is the Stigma Index which required every country to work on its own index towards reducing stigma, she said adding, “the Ghana AIDS Commission in 2015 worked on its stigma index and presented its report.”
The higher the prevalence of HIV/AIDS the lower the stigma
Prof. Lartey further observed that in areas where prevalence is high, society tends to accept sufferers. “If you take South Africa for example where at a point the HIV prevalence was 25 per cent, meaning one out of every four persons was living with HIV, it got to a point that people became used to living and working with people with the virus, so stigma dropped.”
“In the Eastern Region of Ghana also where prevalence was high, you will find out that stigma is not profound,” she added.
The way forward
Prof. Margaret Lartey who is also a member of the Technical Working Group on HIV for the Ghana Health Service, was surprised that even the educated tends to stigmatize persons living with the virus and therefore continuous advocacy and education is required to help people change their perception.
On the new Act to be effected this year by the GAC which will make provision for people who stigmatize others to be sanctioned, she notes that “the Act has been work in progress for a long time and the aim is for it to serve as a deterrent to perpetrators and not to punish so many people.
It is most painful when you realize that people are stigmatized and discriminated against and sometimes stigma is worse than the disease itself.
I will advice that people should know the facts and let go of the irrational fear and allow people with HIV/AIDS to live their near normal life as possible,” she concluded.
The number of HIV/AIDS positive people in the world
Some 36.7 million people worldwide are currently living with HIV/AIDS and 1.8 million children worldwide are living with the virus.
In sub-Saharan Africa, 24.7 million people are said to be living with HIV/AIDS.
An estimated 250,000 people are living with the disease in Ghana, and there were 12,803 new infections in 2015.
By Emmanuel K. Dogbevi & Pamela Ofori-Boateng
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