Worse Than HIV, the Stigma

By Mehru Jaffer Reprint | | Print |

Mehru Jaffer

VIENNA, Jul 23 2010 (IPS) - Kiren Kaur, 37, has come to terms with HIV she contracted from her husband in 1997. The HIV positive status, per se, is not difficult to deal with. But dealing with the stigma that comes with it is an excruciating experience.

“My HIV status does not bother me any more,” she told IPS at the global conference on AIDS that concludes in Vienna Jul. 23. “It is the double stigma that I face as a widow and an openly HIV positive person that is painful. It is stigma that prevents me from enjoying an intimate relationship (with my family).”

Kaur was 24 years old when her husband died in her arms of AIDS. She suspects he contracted HIV before marrying her.

“My husband was depressed after he was told he had AIDS and he did not talk much. He did not say how he got HIV and I did not ask,” says Kaur, who is a Bangkok-based coordinator for Women of Asia Pacific Network of People Living with HIV/AIDS, a support group.

Kaur’s in-laws blamed her for her husband’s death. She was forced to return to her parents. For many years, she was too depressed to do anything. Her HIV positive status was holding her back, but in 2004, Kaur agreed to set up a support group at a hospital in Kuala Lumpur.

That opened up a slew of other avenues. She became a member of the Kuala Lumpur AIDS Support Services Society (KLASS), another support group, and got the opportunity to travel to Bangkok to attend the International AIDS Conference on a scholarship partly funded by the University Malaya Medical Centre.

“Today I have a great career and I am happy but I still dream of falling in love and having children,” Kaur said.

What holds her back from realising her dream is social stigma.

While a great deal of success has been achieved in both the prevention and treatment of HIV, stigma and discrimination constitute the greatest barriers in dealing effectively with the epidemic, according to the United Nations Development Fund for Women (UNIFEM).

A combination of shame and fear leads HIV positive people to delay testing. It deters them from seeking early treatment and care, and encourages reckless sexual behaviour without contraceptives. Stigma is also known to affect the economic well being of HIV positive people.

In Asia, the spread of HIV is exacerbated by stigma and discrimination.

“Our part of the world continues to be shrouded in fairy tales. People strongly believe that our culture is self-regulatory, that young women have sex only after marriage and that men do not have sex with men,” Dr. Nafis Sadik, United Nations Special Envoy for HIV/AIDS in Asia and the Pacific told IPS. “There is a total lack of awareness. Most women don’t know about the use of condoms or about childbirth. Many people still think that AIDS is transmitted through a handshake.”

Research shows that illiterate women are four times more likely not to know how to prevent the contraction of HIV. Out of 875 million illiterate people in the world, 66 percent are women.

World Health Organisation (WHO) statistics reveal that HIV is the leading cause of mortality and disease among women of childbearing age between 15 years and 19 years worldwide.

Early marriage increases the risk of HIV infection. In Bangladesh, Ethiopia, India and Nigeria, 40 percent of women are married before the age of 15. And most women don’t have any knowledge about the virus.

Only 1.2 percent women in Indonesia who are married or living with a partner use condoms. That number is 1.3 percent in Thailand, 8.3 percent in Vietnam and 5.2 percent in India.

Eastern Europe and Central Asia are the world’s fastest growing epidemic region. The infection is expanding rapidly in the Baltic States, the Russian Federation and several Central Asian republics, fuelled by high rates of injecting drug use among young people.

In Southern Africa, the average HIV prevalence among young women aged between 15 and 25 is three times higher than among men of the same age. In sub-Saharan Africa, 60 percent of people living with HIV are women.

“As a woman, I am really happy to hear about microbicides (substances which reduce the risk of HIV infection), but as a HIV positive woman, it is too late for me. HIV positive women still have sex. If you have access to a female condom, you can protect your partner, and you can protect yourself from unwanted pregnancy,” said Carol Nawina Nyrienda, national coordinator of the Community Initiative for TB, HIV/AIDS and Malaria in Zambia.

Nyrienda contracted HIV from her husband. She advocates the use of female condoms because she says women can no longer take the risk of depending on male partners to keep them safe.