Uzbekistan: Activists Strive to Raise Awareness about HIV/AIDS

Fueled by cheap heroin from neighboring Afghanistan, Uzbekistan's drug problem is growing, and with it, the incidence of HIV/AIDS.

Yuri Bartenev, a pediatrician-turned-playwright, is trying to do something to soften the social impact of the spread of HIV/AIDS. Bartenev, 35, has seen a number of friends die from the disease, and he has witnessed how HIV-positive people are often shunned by family, friends, and society at large.

In an effort to raise awareness - and confront the lack of public discussion about the illness - Bartenev decided to mount a series of one-act plays that directly addressed the issue. He visited several Tashkent's theaters in search of a space, only to have his request rejected at each venue. At one theater, he was told that if he altered the play so that its protagonist was not a gay man, he would be allowed to perform there. Homosexuality is a crime in Uzbekistan, and theaters are state-run entities that cannot risk angering officials. Bartenev refused.

Though AIDS education in schools is widespread, and young people are often well informed about the topic, the official press rarely acknowledges problems within the country, most especially the growing number of HIV infections. The Uzbek government is also reluctant to openly address a drug or HIV/AIDS problem.

For example, in the eastern city of Namangan last November, an HIV crisis came to light only after the British Broadcasting Corp. reported that many children there had been infected with the virus. The government at first denied the report. Eventually, officials declared that 28 babies had been infected, but some observers believe the actual number to be higher. The means of infection has not yet been confirmed, according to a health worker close to the investigation, although unsterile needles are widely believed to have played a role.

Bartenev's window into this world was his longtime friend Sergei Uchaev. Uchaev leads support groups for those with HIV/AIDS at the government AIDS clinic in Tashkent's Chilonzar District.

Those with HIV/AIDS are often fiercely protective of their status, Bartenev noticed; the stigma that surrounds the issue often leads them to cut themselves off from society. When Bartenev visited one of Uchaev's support groups, for example, he was the first non-HIV positive person allowed to take part in a meeting. "I saw how they were socially unaccepted and discriminated against," he said.

Bartenev was moved to act "because I wanted to do something positive and attract attention to the issue."

Uchaev, 36, discovered he was infected with the HIV virus 12 years ago after an operation; a long-term heroin addict, he had regularly shared dirty needles with others. The doctor who informed him he was HIV positive turned her back on him in apparent disgust, he recalled. After a year of deep depression during which he rarely left the apartment he shared with his family, he eventually emerged to visit the Chilonzar center.

Bartenev and others offer praise for the Ministry of Health for providing free treatment to those with HIV/AIDS, clean needles to drug users, and publishing informational materials about HIV/AIDS. "But people always close their eyes," Bartenev noted, and meanwhile "the situation is deteriorating."

Officially, 16,588 persons are HIV positive in Uzbekistan, although as with many official statistics in the country, the number is considered inexact. In 2007, the official number was 13,184 registered infections.

After an extended search, Bartenev finally found a space for his performance at the avant-garde Ilkhom Theater. The one-day show - providing practical information such as how HIV can be transmitted and clarifying the difference between HIV and AIDS - ran in March. The performance, which sought to humanize those with HIV/AIDS, also highlighted how HIV can be managed with proper treatment, a fact that seems widely misunderstood. "My goal was to make people react to those with HIV/AIDS as 'normal' people," Bartenev said. Underlining that effort, five members of Uchaev's support group performed in the show that night.

After the production, called "Status Plus" - which featured three one-act pieces by playwrights from Kazakhstan, Belarus, and Uzbekistan - Bartenev invited spectators to discuss the plays.

In the audience that night was Gulnara, 35, a business professional from Tashkent, and her 15-year-old daughter. Although drawn to attend, she says, because she felt that "finally someone is going to discuss the problems we have in Uzbekistan, which we usually pretend we do not have," she, like many others, felt a profound discomfort talking about such issues.

"I come from a very conservative Uzbek family, and I don't know how to talk with my daughter about sexual relationships and topics such as sexually transmitted diseases," Gulnara admitted. "Mothers always hope that their children are taught such things at school, but I found out they never had lessons on sex matters," she said. "After the play, we had a long discussion, and she asked me a million questions."

People with HIV/AIDS provoke anger, she said, because "many think it is acquired from unacceptable sexual relationships." The plays showed her that was "a mistake."

Sexual taboos play a big role. "Our parents never teach us how to be tolerant," Gulnara explained. "Abnormal" sexual behaviors, which she defined as "homosexuality, fellatio, and prostitution," are considered "disgusting and dirty."

"HIV/AIDS is still something dark and unknown [in Uzbekistan]," says Dr. Ruslon Remetov, who works at the Chilonzar AIDS clinic. For patients, fully comprehending that HIV is not a death sentence takes repeated visits to understand, he says. "No one is aware of the possibility of living."

If Bartenev can secure the funding - this year's show was self-financed - he plans to produce the performances again next March. He hopes also to produce a series of plays that confront other unexplored social problems. As for Uchaev, he is working to register an NGO called "Network HIV Positive" to spread a simple message: "it's OK to be HIV positive."