Rejection. Fear. Anger. These are some of the feelings that come to the surface when HIV-positive women talk about stigma and discrimination.
"It's like being completely invisible to society," said Esther Sheehama, 24, of the Young Women's Christian Association (YWCA) of Namibia. Sheehama and other women living with the virus have many stories about how they were rejected by their families and communities because of their status.
These accounts had never been organised in a systematic way said Alejandra Trossero, an HIV coordinator for the International Planned Parenthood Federation (IPPF). Until now, most studies measuring prejudice had focused on the attitudes of health workers, families and communities.
"We are collecting the experiences of how people with HIV deal with stigma and discrimination. We have anecdotal evidence, but we want to bring it all together in order to match it with existing data," Trossero explained. So the idea came up of compiling an index about people with HIV, for people with HIV.
If a government demonstrates that stigma in its country has diminished, and health services are more accessible, the index could be used to compare official information with the perceptions of HIV positive people in that country.
A pilot programme was launched in October 2006 in Kenya, India, Lesotho and Trinidad and Tobago, by a partnership between UNAIDS, the IPPF, the World YWCA, and the International Community of Women Living with HIV/AIDS (ICW).
About 20 people in each country responded to a questionnaire that included questions on personal experience of stigma, HIV testing, diagnostics, treatment and parenthood. The preliminary results were presented at the first global conference on Women and AIDS, in Nairobi, Kenya, in early July.
In the pilot phase of the project 16 percent of interviewees reported they had been excluded from social gatherings at some point; 35 percent felt sexually rejected; 30 percent reported that their families suffered discrimination; and 17 percent said that they had received poor medical treatment due to their HIV status.
"If we know how prejudice works, we can help eliminate it," said Kate Thomson, a partnership counsellor to UNAIDS, who is HIV-positive. "And if we manage to prove it scientifically, people will listen to us."
Trossero said another objective of the pilot programme was to capture the particular experiences of specific groups, such as men who have sex with men, injecting drug users and sex workers.
The next step will be to conduct research at national level in the countries where the pilot programmes were carried out. According to international standards, an average sample size of 2,000 respondents is required for the resulting data to be considered relevant. The pilot programme involved just 100 interviewees, or only five percent of what is necessary.
The data will be made available to organisations working with people with HIV, UNAIDS would include the information in its annual report, and it would also be an important advocacy tool.
"The key to the index is recognising that people living with HIV are agents for change," said Thomson, of UNAIDS.
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