Discrimination Against Those With AIDS

When one ... look[s] at the experiences of people with HIV/AIDS, two things stand out. The first is the diversity of people with HIV/AIDS. The second is how often and in how many ways people with HIV/AIDS are stigmatized or discriminated against. Sometimes it appears as if the various people with HIV/AIDS have only two things in common: HIV infection and HIV-related stigma and discrimination.
– HIV/AIDS and Discrimination: A Discussion Paper

An Epidemic of Stigma and Discrimination

In many ways the stigma of HIV/AIDS has had an even wider reach and a greater effect than the virus itself. The stigma of HIV/AIDS affects the lives not only of people with HIV/AIDS, but also of their lovers, families, and caregivers. It affects not only those who are stigmatized, but also those who stigmatize them through their attitudes or their actions – in the community, on the job, in professional capacities, in public office, or in the media. Often, the stigma of HIV/AIDS adds new prejudices to old.

Consequences

An Epidemic of Stigma and Discrimination

Since the beginning of the HIV/AIDS epidemic, there has been a second epidemic – one of stigma and discrimination. Today, stigma and discrimination associated with HIV/AIDS are still pervasive, but the forms they take and the context in which they are experienced have changed.

This epidemic of stigma has consequences: people with HIV/AIDS have been prevented from seeking or obtaining the health care and social support they require; adults with HIV/AIDS have lost their jobs or have been denied employment, insurance, housing, and other services; children with HIV/AIDS have been denied day care.

Stigmatization has also been a barrier to prevention efforts: because of their beliefs and values, some people (and governments) have chosen to withhold information about preventing the transmission of HIV, and have supported laws and policies that make the victims of stigma more vulnerable to HIV infection.

The Current Situation

One Step Forward ...
The early societal panic about AIDS has diminished. The federal and several provincial human rights commissions have adopted policies that clearly state that disability or handicap provisions in existing human rights acts protect people with HIV against discrimination. More and more Canadians know someone who lives with HIV or has died of AIDS, prominent celebrities have announced that they are HIV-positive, and AIDS activists have won admiration in many quarters of society. These developments have somewhat lessened fears that the inevitable result of infection with HIV is complete social isolation.

... But Discrimination Remains Pervasive
Nevertheless, today stigma and discrimination associated with HIV/AIDS are still pervasive in Canada, although the forms they take and the context in which they are experienced have changed.

The epidemic of HIV infection is expanding among diverse populations, many of whom live on the margins of Canadian society: injection drug users, prisoners, Aboriginal people, young gay men, women. While many aspects of HIV-related discrimination are the same for all populations, in some ways the experience and impact of discrimination are unique to specific populations. The most marginalized people living with HIV experience many forms of stigma and discrimination. They also have the least resources or support to enable them to fight back.

With the advent of protease inhibitors and combination therapies, many – but not all – people with HIV/AIDS are living longer and enjoying better health. While these therapies have produced considerable benefits, the often-made presumption that people with HIV/AIDS can now lead “normal” lives is dangerous. For example, it has resulted in a tendency to become more restrictive in determining whether they qualify for disability benefits. The fact that people with HIV/AIDS are still vulnerable to stigma and discrimination is forgotten in these discussions. In many ways, the era of combination therapies has exposed people with HIV/AIDS to a greater threat of discrimination. As one person stated: “I was able to remain invisible living with HIV until two years ago. Now I have to carry my bag of medications around all the time – I am always visible. I carry my stigma around.”

The era of combination therapies is also raising new concerns about the ethics of informed choice in treatment decisions. There are reports that people with HIV/AIDS have been pressured by their physicians to begin treatment with the latest generation of HIV drugs and have been denied services if they refuse to begin treatment.

There continue to be problems of access to care for marginalized populations. People with HIV/AIDS are often not provided with the support they need to assist them in maintaining the complicated combination therapy regimens.

Discrimination has become more subtle and less explicit. In the past, for example, people may have been fired outright when it was discovered they were HIV-positive. Today they may be laid off for “other reasons,” or they may be harassed and pressured to the point that they quit their jobs or go on disability. Fear of being identified at work and of losing their job in fact prevents some people from taking HIV-related medications.

Written in 1999. Last reviewed: 10/05