It is hard to measure stigma–people with HIV see it in a scornful look in the marketplace, in the refusal of family and friends to visit, care for or even touch them, in the maltreatment of their children or the loss of their job on a flimsy pretext. But stigma is a very real obstacle to both prevention and care. In many of the hardest-hit countries, government officials and ordinary citizens–including those most affected by the epidemic–often continue to look the other way because of the rejection, discrimination and shame attached to AIDS.
Stigma and the fear it engenders both fuel the spread of HIV, since those with risky behaviour in the past may be reluctant to change that behaviour in case the change is interpreted as an admission of infection. Fear of acknowledging HIV infection can stop a married man from raising the subject of condom use with his wife. Fear of advertising her HIV status may prevent an infected woman from giving her baby replacement feeding to avoid transmitting the virus through breastmilk.
The stigma attached to HIV affects both sexes. However, the consequences may be more severe for women, who risk being beaten and even thrown out of the house by their husband if their status is revealed. This is true even when the husband was the source of the woman’s infection. An HIV-infected woman may be blamed for the death of her children, and deprived of care.
In places where shame and stigma are the rule, many people simply do not want to know if they are HIV-infected, even when counselling and testing are offered. And the small minority of people who know their HIV status rarely share it with others, even in confidential support groups. In Zimbabwe’s city of Mutare, for example, surveillance data show that close to 40% of pregnant women are HIV-infected, and infection levels in men are likely to be similarly high. There are probably 30 000 adults living with HIV in Mutare. Yet there is just one HIV support group in the city, and it has just 70 members. Many more people know or fear they are HIV infected: some will find support in their partners or families but many will struggle alone with the implications of their infection.