Stamping out the HIV stigma

By Lionel WIJESIRI

Consultant Specialist Dr. P. Weerasinghe revealed recently that as at March 31, 2012 there were 775 AIDS patients and 1,503 individuals who had contracted HIV in Sri Lanka. He added that according to the figures available, there are more than 3,000 people affected by HIV in the island.

Sri Lanka is considered a low prevalence country in the South Asian region with less than 0.1 percent of the general population infected with HIV. According to the National STD/AIDS Control Program, the HIV prevalence rate has remained less than one percent even among most-at-risk populations such as female sex workers.

Still, Sri Lanka also has risk factors which could potentially increase the rates of HIV transmission. Among them are:

* Migration for employment,
* Increasing number of sex workers. It is estimated that there are 40,000 women engaged in commercial sex today,
* Increasing number of sexually active youth,
* Low levels of knowledge about HIV,
* Booming tourism.

There are a number of factors which act as barriers to public action. Among them, stigma remains the most important one. It is the main reason too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if they do.

It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is the chief reason the AIDS epidemic continues to devastate societies around the world.

A physician once told me, “If you had an opportunity to talk to a few patients with HIV, you will understand that their overriding concern is not the infection itself, but the way other people will treat them should they find out about their condition”.

Death sentence

Even now, 30 years after the virus was identified and despite the availability of potent drugs that mean a positive diagnosis is no longer an automatic death sentence, HIV/AIDS remains a disease shrouded in secrecy because of the persistent stigma attached to it. People who are HIV positive can be anywhere in our community and still at risk of discrimination, based on misunderstanding and half-truths. HIV attracts ignorant infamy and hostility like few other diseases.

Back in the eighties, there was rampant speculation about the infection, because scientists were baffled by it. The legislation and guidance originating from that era reflects this huge uncertainty. However, HIV is now one of the most scrutinised of all viruses, its transmission, spread, management, treatment and prevention understood like no other. This knowledge has rendered many of the restrictions put in place 20 or more years ago, based on what was known then, massively out of date.

Stigma not only makes it more difficult for people trying to come to terms with HIV and manage their illness on a personal level, it also interferes with attempts to fight the AIDS epidemic as a whole. On a national level, the stigma associated with HIV can deter governments from taking fast, effective action against the epidemic, while on a personal level it can make people reluctant to access HIV testing, treatment and care.

What is the reason for this stigma? Fear of infection coupled with negative, value-based assumptions about people who are infected leads to high levels of stigma surrounding HIV and AIDS.

Factors that contribute to HIV/AIDS-related stigma include:

* HIV infection is associated with behaviour (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised in many societies.
* Most people become infected with HIV through sex, which often carries a social stigma.
* There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and misconceptions of personal risk.
* HIV infection is often thought to be the result of personal irresponsibility.
* Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault that deserves to be punished.
* The effects of therapy on people’s physical appearance can result in forced disclosure and discrimination based on appearance.

Different contexts

In 2003, when launching a major campaign to scale up treatment in the developing world, the World Health Organization (WHO) said: “As HIV/AIDS becomes a disease that can be both prevented and treated, attitudes will change, and denial, stigma and discrimination will rapidly be reduced.”

It is difficult to assess the accuracy of this statement as levels of stigma are hard to measure and a number of small-scale studies has shown that the relationship between increased access to HIV treatment and a reduction in stigma is not always clear.

The fact that stigma remains in developed countries such as USA, where treatment has been widely available, also indicates that the relationship between HIV treatment and stigma is not straightforward. An estimated 27 percent of Americans would prefer not to work closely with a woman living with HIV. Moreover, preliminary results found that 17 percent of respondents living with HIV in the UK had been denied health care and that verbal harassment or assault had been experienced by 21 percent of respondents.

I asked a young educated woman what she thinks about a colleague living with HIV. “Because it is about sex, I think she got it because she has been loose…she is not anything better than a prostitute.”

This woman’s experience reveals the multi-layered nature of stigma. Within her quote she reveals being stigmatised, but perhaps unknowingly accepting of the stigma against infected sex workers.

In the workplace, people living with HIV may suffer stigma from their co-workers and employers, such as social isolation and ridicule, or experience discriminatory practices such as termination or refusal of employment. Fear of an employer’s reaction can cause anxiety in a person living with HIV.

Community

A community’s reaction to somebody living with HIV can have a huge effect on that person’s life. If the reaction is hostile a person may be discriminated against and may be forced to leave their home, or change their daily activities such as shopping, socialising or schooling.

Community-level stigma and discrimination can manifest as rejection and verbal and physical abuse. It has even extended to murder. AIDS related murders have been reported in countries as diverse as Brazil, Colombia, Ethiopia, India, South Africa and Thailand. It is therefore not surprising that 79 percent of people living with HIV who participated in a global study, feared social discrimination following their status disclosure.

Family

In developing countries, families are the primary caregivers when somebody falls ill. There is clear evidence that families play an important role in providing support and care for people living with HIV and AIDS. However, not all family responses are supportive. HIV positive members of the family can find themselves stigmatised and discriminated against within the home.

Progress

So how can progress be made in overcoming this stigma and discrimination? How can we change people's attitudes to AIDS? A certain amount can be achieved through the legal process.

In some countries people living with HIV lack knowledge of their rights in society. In this case, education is needed so they can challenge the discrimination, stigma and denial that they encounter. Institutional and other monitoring mechanisms can enforce the rights of people with HIV and provide powerful means of mitigating the worst effects of discrimination and stigma.

However, no policy or law can combat HIV/AIDS related discrimination on its own. Stigma and discrimination will continue to exist as long as societies have a poor understanding of HIV and AIDS and the pain and suffering caused by negative attitudes and discriminatory practices.

The fear and prejudice that lie at the core of the HIV/AIDS-related discrimination need to be tackled at the community and national levels with AIDS education playing a crucial role.

A more enabling environment needs to be created to increase the visibility of people with HIV/AIDS as a ‘normal’ part of any society.

The presence of treatment can make this task easier; where there is the opportunity to live a fulfilling and long life with HIV, people are less afraid of AIDS; they are more willing to be tested for HIV, to disclose their status, and seek care if necessary.

The task is to confront the fear-based messages and biased social attitudes, to reduce the discrimination and stigma of people living with HIV and AIDS.