“Getting to Zero", I am of the opinion that Stigma is the final battle front in the war on HIV and AIDS. We have made unbelievable strides in care and treatment. Treatment as prevention (TASP) is in our hands, used correctly we can achieve the objective of "Zero New Infections" and soon "Zero AIDS Related Deaths" will become a reality, it is not impossible to have a vision of an AIDS free future! However, all these efforts will fail if we do not overcome stigma and discrimination. Getting to an 'AIDS Free Future' will require strong political will, effort and commitment from all if we wish to succeed and reach the target of "Getting to Zero Stigma and Discrimination". This final frontier must be overcome now! We cannot afford not to! Without wiping out stigma ....HIV and AIDS will continue to spread and the AIDS related deaths will continue unabated!
Let us first reflect back on the past.
Acquired Immune Deficiency Syndrome (AIDS). I first heard those words more than 25 years ago. But it wasn't until eight years later; when I heard the following words from my doctor “your HIV test has come back positive”, that the reality of what it meant really hit me. By that time more than 4million South African’s had contracted HIV, and many thousands had died of AIDS. The disease had become real for me and for my colleagues in virtually every corner of the country.
So much about HIV/AIDS and the epidemic has changed since then. Yet one thing has not changed nearly enough -- HIV is now, as it was in 1980’s, the most stigmatised disease in South African society.
In the 1980’s, the stigma attached to HIV, while undeserved, was at least a little more understandable. We knew very little about the disease then. Fears of being infected from kissing, holding hands or sharing a cup with someone with HIV was still common.
Doctors and patients were scrambling to stir up scientific research programs that in many ways had been slow to respond. Despite a rapidly expanding caseload, there was very little reliable medical or scientific information about the virus, how it was transmitted, or what could be done to treat it.
In fact, effective HIV treatments were virtually non-existent at that time. The few medicines that were being used were no match for the virus, treatments quickly became ineffective as resistance to these drugs occured. The treatment regimens often involved so many pills and such severe side effects that many people felt that taking their medicines every day was as difficult as the disease itself.
Too often, being HIV positive meant having to cope on your own. It wasn't uncommon for doctors and other healthcare workers to refuse to see patients who they knew were HIV positive. Social workers, lay counsellors and activists around the country responded at that time, and services for many people began, gradually, to improve.
The situation today is very different. We now know how HIV is transmitted, and we know how to prevent infection. Scientists have learned how HIV attacks the body's immune system, what its weaknesses are and how to exploit them. They've even mapped out the virus's genetic structure.
HIV treatments have also improved dramatically in recent years. With the introduction of powerful new drugs in the mid-1990s, HIV/AIDS death rates began to drop for the first time since the start of the epidemic. More recently, treatments that require fewer pills and cause fewer side effects have begun to help people with HIV/AIDS live longer, healthier and fulfilled lives. Thanks to these advances in care, HIV is well established as a chronic but medically manageable condition.
Support services for people with HIV have also improved. In practically every city across the country you will find community organisations and groups dedicated to helping ensure that HIV positive individuals get the care and support they need and deserve.
Yet, despite all this progress, the terrible stigma associated with HIV and AIDS continues unabated. Isolation, fear and shame continue to cloud this diagnosis of an HIV status for many.
What's worse is that the stigma surrounding HIV actually helps to perpetuate the epidemic. Most of the over six million South African’s estimated to be infected with HIV don't even know they have the virus. The cause of this reality is not ignorance as much as it is fear of rejection and discrimination. Each year, thousands of people who have contracted HIV do not get tested out of fear that an HIV positive diagnosis will mean a life of isolation and discrimination.
Misinformation accelerates the spread of HIV in communities across the Southern Africa, particularly among minority and poorer populations that already suffer more than their share of prejudice and discrimination. Despite progress in so many other areas, HIV infection rates continue to grow.
We can't afford to let another 20 years go by before we separate the myths surrounding HIV and AIDS from the reality. It's time we started seeing the disease for what it is: a serious communicable disease that is both avoidable and although still incurable has become very treatable and manageable. We need more open and frank education and more community leadership to address this epidemic. We must also target resources to address the changing demographics of the disease, so that information and education programs can be tailored to the audiences that need them most.
Finally, people living with HIV/AIDS must have access to the medical care, prevention and treatment information they need. Research advances have meant that more and more people with HIV are living full, normal lives. It's time that the human progress in how we handle HIV/AIDS in our community begins to match the advances being made in the research lab.
Give the following questions some thought:
Has the message about HIV/AIDS over the past 30 years helped or increased stigma and discrimination around HIV/AIDS? Consider the following:
- Today, people with HIV are still stigmatised and continue to face many forms of discrimination.
- Some people are refused employment or membership of employee benefit schemes.
- Some people are refused proper health care and equal membership of medical schemes, or their children are victimised at schools.
- Many people are tested for HIV in our hospitals without giving informed consent, or are told about their HIV status without receiving proper counselling.
- Breaches (breaking of) of confidentiality and privacy happen almost every day.
Why does stigma and discrimination help spread HIV? Consider the following:
- Is it who and what you are that puts you at high risk of contracting HIV, or
- Is it behaviour that puts you at greater risk
How do we stop discrimination? Consider the following:
- Can the law help?
- Does having a constitution help?
- Does having knowledge help?
Today, we know that stigma and discrimination has helped the spread of HIV. Discrimination has made it easy for people to blame others without protecting themselves. Instead of campaigns that educate everyone in our society, people have been taught to believe that HIV infection only happens to gay people, prostitutes and ‘people who sleep around’. If you are not gay, a prostitute, or promiscuous you are ‘safe’. This is not true.
- Types of behaviour, not groups of people, put you at risk of HIV infection.
- For as long as people with HIV continue to face discrimination, people will be afraid to volunteer for an HIV test,
- This means that it will be more likely that they will unknowingly pass HIV on to other people.
- Unless people are encourages to come forward freely to tell others about their HIV status, ignorance and misunderstanding about HIV and who is affected by it will continue.
Discrimination is prejudice in action!
The non-legal definition of prejudice is “Preconceived judgments or decision; unreasonable predilection or objection; esp. an opinion or leaning adverse to anything without just grounds or before sufficient knowledge.”
Now that is a bit complicated so I am going to simplify it down to “illogical reaction to fears of anything outside ourselves”. And, yes, people often have prejudices even when they have been presented with the facts that point to the fears being groundless.
The list of prejudices dreamed up by the public and especially public figures, educators, clerics, generals, and politicians is almost endless. Just about any complaint that has been thought of has soon had its associated prejudice.
In the First and Second World War hatred of Germans was considered national pride, even though a great percentage of the people who founded the United States were German. In fact, In the USA, English as the national language won over German by just a few votes!
In the Second World War hatred of Japanese was even more irrational. Driven by movies and the press, that hatred came to a fever pitch during the WW11. Those of Japanese descent and Japanese on American soil were rounded up, thrown into concentration camps, and deprived of their land and possessions. Amazingly enough, this did not happen to those of German descent! Talk about irrational.
Now people in the United States can’t get enough of Japanese cars, computers, electronics, etc. And they admire the German people for their cars, military, clean living, etc. Talk about irrational. But there it is: once the threat is past, all the bad things we perceived about the “enemy” are forgotten.
The best example of how prejudices, fuelled by fear creates myths and illogical reactions is the story of “Juliana’s cloth disease” of Tanzania.
The story goes as follows:
A handsome Ugandan trader arrived selling cloth for women’s kangas with a sort after patterned named Juliana. A village girl with no money traded sex for a kanga, as did several other women who converted the beautiful Juliana patterned cloth into a wrap or kanga. Some months later the first girl became sick: she had no appetite, could hold down no food, and had constant diarrhoea, which filled her with shame. In a few weeks she wasted away, grey and weak, and had to be carried everywhere. Before she died, two other women, also adorned in Juliana’s cloth, came down with the same strange disease. The people of Lukunya decided that the Ugandan was a witch, and that the Juliana cloth had evil powers. To conquer Juliana’s disease, traditional healers toiled to lift the stranger’s curse. But the curse was too powerful and the death toll continued to rise. Within a year the curse had spread to the neighbouring villages. Rumours of widespread witchcraft spread through the Kagera region, and traditional healers felt compelled to solve the Juliana mystery. (Garrett, 1995:334-335)
In 1995 doctors identified that the reported cases of wasting disease (“Juliana’s disease”) in Kagera, Tanzania as AIDS cases, based on comparisons with published symptoms in the medical journals in the U.S.
However the story does illustrate how people can experience the world in a unique and very specific way that is different from the way in which others experience it. Understanding these beliefs and not simply laughing them off as silly prejudices that result from ignorance is critical to our ability to address HIV and AIDS prevention messages in Africa.
Below is an exert taken from Alan’s recently published book called, “Positively Alive” published by Jacana, 2005 which is available at Exclusive Books.
I remember the first World AIDS Day celebration that I attended in 1998. A number of HIV/AIDS organisation rallied together to commemorate the event at Zoo Lake in Johannesburg. It was only a small gathering of people but the event made a huge impact on me at the time. Beautiful, haunting music was being played from a car radio. The event was more a memorial ceremony than a celebration. As the sun set, a prayer was said and everyone was given the opportunity to light floating candles. These were then placed on the lake in memory of loved ones that had died of AIDS. As I watched, I was struck by an overwhelming sense of the hopelessness and loss that each candle represented. To make matters worse a gentle breeze was blowing and as each candle was placed on the water it would simply flicker and die. Hands reach out to try and keep them protected from the breeze. A few managed to be re-lit only to quickly fade and sink beneath the water. The entire event reflected the hopelessness and lack of ability to do anything for those infected at that point in time.
In this time of despair, I was forced to consider the purpose of my life. As I began to examine my belief structures I entered into a holistic approach to health through the crisis of this terminal illness. I have learnt so much and become a far more spiritually mature person.
So much has changed since 1998. HIV is now classified as a chronic manageable disease with continuing improvements in the availability of medical treatment. Much more is known about the effects of balanced nutrition in relation to maintaining a healthy immune system. The effect that stress has on the individuals’ ability to heal is well documented.
The HI virus, however, continues to affect millions of people throughout the world. The traumas experienced by so many people infected by HIV and AIDS indicates that health is generated by a balance of the emotional, psychological and spiritual aspects that form the core of who we are. In the same way that my being HIV-positive has brought a crisis into my family so the planetary family is facing the same crisis of HIV. We will never be able to overcome this epidemic by individual responses. By begin to think of ourselves as united in our efforts – firstly healing ourselves – and then our relationship to each other; we can embrace the reality of healing our planet. If it is true that, “AIDS is, indeed a virus that thrives on “victim” consciousness, fear responses and isolation” - Caroline M. Myss then surely love with compassion and acceptance will go along way in helping those affected by HIV and AIDS to remain ‘Positively Alive’.
Contact Alan Brand from Positively Alive should you wish to inquire about a quotation to host the accredited workplace related employee wellness and training modules at your workplace, these courses are facilitated by Alan Brand from Positively Alive, and include amongst others the highly successful: “Mitigation of HIV and AIDS related stigma & discrimination in the workplace – Training Module”.
POSITIVELY ALIVE cc
Employee Wellness Consultant and Specialist Trainer