Tajiks With HIV/AIDS Suffer in Silence

Thirty-nine-year-old Vika, a junior nurse in Dushanbe, Tajikistan, shudders whenever she remembers the moment she had to tell her boss she was HIV-positive.

She needed the day off for treatment and decided to tell her employers what was going on.

The result was worse than she could have imagined.

“When they found out I was HIV-positive, my colleagues changed their attitude to me a lot,” she recalled. “I even overheard two of my colleagues saying people with HIV or AIDS should be rounded up and burned.”

Vika says her medical colleagues were far more hostile than the prisoners she encountered in jail, where she once served a sentence for drug abuse.

Now she volunteers as an HIV/AIDS awareness activist, but she is still wary of speaking openly about her disease.

Ironically, her reluctance to talk about her status only deepened when she attended a workshop last year on the subject of the stigma faced by HIV-infected people.

“I was shocked when I found out what most members of society really thought of people like me,” she said.

RELENTLESS SPREAD

Tajikistan is struggling to cope with the slow but steady spread of HIV/AIDS, hindered not only by the poverty of its the medical service but also by conservative moral attitudes which encourage shame and secrecy.

According to recent data, there are just over 1,000 officially confirmed cases of HIV in Tajikistan. The disease is clearly picking up speed - 2007 saw 339 new cases, almost eight times the number recorded in 2001.

In six out of ten cases, the infection is spread through the use of contaminated needles.

The figures may only be the tip of the iceberg, however, and many medics believe the real number of infected people is much higher.

HIV infection rates are marching upwards across Central Asia, spurred on by poor healthcare systems, an increasingly mobile population, and rising drug use in a region that is a major transit route for Afghan heroin. (See HIV Shadow Lengthens Over South Kyrgyzstan, (RCA No. 533, 21-Feb-08.)

One doctor working on HIV/AIDS issues in Tajikistan said the poor state of health records in the country meant no one could determine the exact number of HIV-positive people.

“Young people are being diagnosed as dying from cancer, tuberculosis and other diseases but it could well be AIDS that’s to blame; no one checked their status,” he said.

Pulod Jamolov knows from personal experience what it is like to live with HIV, and what treatment such people can expect.

To improve the life of HIV-positive people and help them defend their rights, he started up a group calling itself SPIN PLUS, a community of HIV-positive drug addicts and people with type-C hepatitis.

“I want to help people living with HIV and AIDS and offer them moral support,” he explained.

One member of SPIN PLUS is Mumin (not his real name), who was refused treatment at his local addiction clinic after admitting his HIV status.

“The clinic’s medical personnel changed their attitude and allowed me to be admitted to the hospital for treatment only after SPIN PLUS insisted they give me a written refusal,” Mumin says.

Savsan is another beneficiary of SPIN PLUS’s lobbying, which secured her the hospital operation she needed, which was initially refused when doctors found out she was HIV-positive.

In theory, doctors have no right to withhold treatment from people with HIV or AIDS. A law on HIV/AIDS says state healthcare institutions are obliged to provide such people with the medicines and support they need, free of charge.

But Jamolov says these rights exist only on paper. In reality, merely to receive free syringe, patients must submit a health certificate specifying whether they are HIV-positive.

WOMEN PARTICULARLY VULNERABLE

While the commonest infection route is via shared needle use among drug users, experts note an increase in the number of women infected by husbands returning from time spent away working as labour migrants.

The risk of transmission from husband to wife is very high, notes Amonullo Ghoibov, secretary of the National Coordination Committee to Prevent and Fight HIV/AIDS, Tuberculosis and Malaria.

“The mentality of the Tajik people, their culture and traditions, do not allow for an open discussion about sex education issues, HIV transmission routes and protection from infection,” said Ghoibov.

“Many labour migrants get infected with HIV by casual sexual partners, as a result of their own ignorance about sexual hygiene,” he adds.

According to experts, 40 per cent of HIV-positive people in Tajikistan are labour migrants, many of whom have picked up the infection working abroad.

Matluba Rahmonova, head of Tajikistan’s National AIDS Centre, says the wives of these men are in a parlous condition.

Traditional gender stereotypes and the subordinate status of women mean few of them get any information on sexual health and reproductive issues, let alone HIV prevention, she says. As a result, there is also a high rate of transmission from mother to child.

“The first case of HIV infection among pregnant women was recorded only in 2005, and now we have 28 HIV-positive pregnant women,” she said.

Rahmonova says research carried out by the AIDS Centre at gynaecology clinics in Dushanbe confirms that while some of the women are drug users, a growing number are the wives of labour migrants.

“Many are in shock when they find out about their HIV-positive status,” she continued. “Their relatives start to blame them for sins they have not committed.”

Manija Haitova, director of the HIV/AIDS Centre for Mental Health, agrees that more and more woman are becoming vulnerable the infection.

“Many get HIV from their husbands because they don’t dare to insist that their husbands get tested for HIV or use condoms,” she said.

Gulbi’s story typifies how the infection is often transmitted. Her husband spent four years working abroad, and on one of his trips home, he passed on the virus to her.

It was only by accident that she found out she was infected, when she took a blood test while being treated for another illness.

Gulbi laments that if she had only known more about the disease, and about the ways it could be transmitted, she would have been “more demanding”.

“I was afraid to talk about HIV/AIDS with anyone,” Gulbi recalls. “Even now, I don’t dare to talk about it with strangers so that people don’t condemn me. But I do have to reveal my status in certain places to get the medical support and drugs I need.”

TRADITIONAL VALUES ENCOURAGE SILENCE

HIV/AIDS experts complain that the culture of secrecy surrounding the virus is perpetuated by negative stereotypes that are widespread in society.

HIV infection and AIDS are commonly believed to be exclusive to drug addicts and people leading a sexually promiscuous lifestyle.

This explains why HIV-positive people encounter such hostility, said Dr Ghoibov.

“People avoid contact with HIV-positive people, believing they can [easily] transmit their infection, though in fact it is easier to catch hepatitis-C,” he said.

Such stigmatisation is a consequence of the low level of awareness, even among trained medics, about how HIV/AIDS can be transmitted.

Haitova said ignorance about HIV in the medical system remains shockingly widespread, mentioning an example she heard about last year, when a young HIV-positive woman was refused help by her own doctor when she went into labour.

“She would have been entitled to bring a lawsuit against her gynaecologist,” said Haitova.

“But she did not want to make her HIV status known and become an object of reproach, so she just went to another doctor.”

PREJUDICE AMONG DOCTORS AND TEACHERS

To shed light on the various forms of discrimination experienced by HIV-positive people, Tajikistan’s Centre for Strategic Studies, working with UNAIDS, the Joint UN Programme on HIV/AIDS, carried out the first national research on the subject in 2007.

The results were illuminating and showed that HIV-positive children often suffered the worst forms of stigma. Disappointingly, the survey showed that prejudice against HIV-infected children was common among both doctors and teachers, who might have been expected to know better.

About half of all secondary school teachers in the country believed HIV-positive children should not be allowed to share classes with others, while 60 per cent of doctors would not want their own children to have any contact with HIV-positive children.

More than 60 per cent of the medics in the poll did not believe HIV-positive staff should be allowed to work in healthcare institutions, either.

The vast majority of clerics were against HIV-positive people holding religious posts.

Most of the respondents said they would not go to an HIV-positive doctor for treatment.

Of course, not all doctors, dentists or teachers are as ill-informed as this.

Mehrobon Sultanov, head of a dental practice in Dushanbe, said he did not believe his colleagues would turn away HIV-positive patients.

“We do not have the right to discriminate against an HIV-positive person,” he said. “They have the same rights as everyone else. We just need to be hygienic and ensure the instruments are sterilised.”

A salesman at one of the main chemists’ shops in the capital also told IWPR he thought it unethical to ask customers about their HIV status.

ENDING THE CULTURE OF SILENCE

Such attitudes are, however, still the exception rather than the norm in Tajikistan.

“Our society is not ready to accept HIV-positive people, and as a result they are exposed to a double stigma – from society and from themselves,” said Dr Haitova. “This stigma applies not only to sufferers but to their families, too.”

She continued, “Even when they know their rights, HIV-positive people often don’t use them because they fear revealing their status.”

The discrimination suffered by HIV-positive people needs to be tackled through wide-ranging education programmes that target various sectors of society, experts say.

According to Haitova, awareness-raising campaigns should “encourage people to break down the wall of silence and clear away the barriers to effective prevention and treatment for HIV/AIDS”.

“Only by declaring war on stigma and discrimination is it going to be possible to work on a solution of the problems that arise because of HIV/AIDS,” she concluded.

Jamila Majidova is an IWPR-trained journalist in Dushanbe.