Tajikistan HIV-infected women fight for their rights

DUSHANBE – Karina Safarova had a good job, where she was treated the same as her co-workers – until she contracted HIV.

“Instructions were issued for everyone to undergo the HIV test in connection with travelling abroad,” said Safarova, who declined to disclose her age or how she contracted the virus. “Shortly after the test, I overheard a fellow worker telling others one of our staffers had been diagnosed to have AIDS. Those words were like a dagger to my heart. ... Who among us had AIDS?”

After she endured several sleepless nights of wondering, she said, her supervisor told her that her test had come back positive. That’s when things started to change.

“He told me to go get re-tested to be sure there was no mistake,” Safarova recalled. “He summoned the foremen over his walkie-talkie and told them to wash (the railway car I had been guarding) with chlorine. .... He said there and then, ‘She’s the AIDS-infected one, and everything here needs to be cleaned up to protect others.’”

After a second test confirmed she had the virus, her employer forced her to retire.

She eventually found a temporary job with an organisation helping other HIV-infected citizens – but even there, she felt “ill-treated, stigmatised and discriminated against.”

She turned to the Mental Health and HIV/AIDS Centre (MHAIDS).

“It’s there that I finally stopped suffering stigmatisation and discrimination,” she said. “Soon afterward, they offered me a full-time job.”

HIV victims stigmatized in Tajikistan

Safarova’s experience is far from unique; stigmatisation of HIV sufferers is common in Tajik society. Khosiyat Kurbonova, 32, a mother of four, acquired the virus from her husband.

“I learned about my status when I was pregnant,” she said. “My first thought was about committing suicide. But I didn’t – thanks to the physicians who helped me overcome that stress.”

After divorcing her husband because he had long known of his infection, Kurbonova faced difficulties applying for a job and obtaining medical care but stayed optimistic.

As she prepared to give birth, though, the maternity hospital refused to accept her. The doctor who had promised to deliver the baby wouldn’t take her calls.

“I then decided to turn to a private healer. Thank Allah, I gave birth to a healthy boy,” Kurbonova said. “But with this kind of doctors’ negative attitude toward HIV-infected women, it might have turned out differently. I’m sorry the doctors don’t understand anyone may get infected. Someday they may find themselves in my place.”

Safarova and Kurbonova are among the few women who openly admit they are HIV carriers, and both have said they’ve “learned to live and enjoy living in spite of the disease.”

Tajik HIV cases on the rise

“The number of HIV-infected people in Tajikistan is 2,336 and keeps growing, just as elsewhere in the world,” MHAIDS director Manizha Khaitova said.

In particular, the growing number of infected pregnant women is a challenge to Tajik society, Khaitova said. Of 145 infected pregnant women registered between 2004 and October 2010, 40 were registered this year alone.

“In the past, we used to think HIV was widespread only among drug addicts and sex workers,” Khaitova said. “But today, the risk group potentially includes also migrant workers’ wives and their would-be children.”

The centre, which opened in 2006, aims to combat the social rejection, limited access to healthcare, and other problems that HIV patients, especially women, face daily, Khaitova said.

“We give them psychological, medical, social and legal assistance,” she said. “We provide training, conduct research and organise mutual assistance groups for HIV carriers. Also, we are providing milk formula to ten HIV-infected mothers to prevent the transfer of HIV to their babies.”

Doctors have registered 483 new HIV patients, including 362 men, this year, Tajik Health Minister Nusratullo Salimov said October 13.

“One of the major reasons for the spread of this disease in Tajikistan is the mass ... work migration abroad,” Salimov said. “Since this year began, 635 HIV carriers have been given anti-retroviral treatment.”

But Firuz Saidov, head of the presidential office’s Social Problems and Labour Market Research Department, said drug users far outnumber migrant workers among HIV carriers.

“The number of HIV-infected citizens exceeds 6,000, 70% of them men,” Saidov said. “Fortunately, early diagnosis results in many HIV carriers giving birth to healthy children. In the first half of this year, 16 absolutely healthy babies were born to HIV-infected mothers.”

Children born with HIV will receive a monthly allowance of 230 TJS (US $52) – about three minimum salaries – beginning in January.

HIV victims must fight negative sentiment

Public sentiment toward HIV victims still varies, Salimov said.

“I hear the number of HIV carriers in our city has been growing,” Safarali Ruzimatov of Dushanbe said. “That’s very dangerous, because healthy people may get infected. … If I happen to learn that someone I know is infected, I’ll stop meeting with him or her.”

“One of my son’s classmates is HIV-infected – what of it?” Rukhsara Valiyeva said. “The head teacher for his grade is an understanding woman who has explained everything to the kids – and to the worried parents too.”

Bacteriologist Rokhilla Shukurova blames the physicians who refuse to help HIV carriers for the continued social stigma.

“A doctor must treat HIV carriers with understanding and help them in every possible way,” she said. “If such a patient turns to me for assistance, I’ll be sure to do whatever I can.”

Ultimately, Safarova said victims must not surrender to despair and must focus, instead, on what’s important.

“I have a daughter who started university this year,” she said. “I want to live and work for her sake and enjoy each extra day I am offered to live.”