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Dagestani Activists Confront AIDS Ignorance

A pioneering group tries to turn around public attitudes on HIV-infection.
By Anya Zhuzhleva
Introducing themselves, they give false names: Marat, Amina, Albina and Kazbek. The four form the backbone of the organisation SVOI (the Russian word means “our own” and is also an abbreviation for “freedom of expression of common interests”.)

The quartet have sent themselves a breathtakingly difficult goal - to turn around public attitudes towards HIV-infection in one of Russia’s most traditional and conservative regions, the mountainous autonomous republic of Dagestan.

After learning about their HIV diagnosis, Marat, Albina and Kazbek (Amina is not infected, but she is married to Marat) initially tried to cope with their problems on their own. They joined forces in May 2005 to found an organisation bringing together people diagnosed with HIV that aims to halt the spread of the infection and increase public awareness about it.

“Although the information about the infection and ways of contracting it are readily available, we constantly encounter ignorance about HIV,” said Amina. “For instance, many believe that HIV-positive people cannot give birth to healthy children. But this isn’t true! The family Marat and I have is proof of that - our three kids are absolutely healthy.”

For HIV sufferers, a slight cold can be potentially fatal. “That is why when we come to beauty salons, saunas, restaurants and cafes, we check if the conditions are sanitary,” said Amina. “We do this to reduce the risk of my husband and other guys catching diseases that are dangerous for them, rather than to prevent the spread of HIV.”

The pattern of the disease is changing and numbers are rising fast. Doctors say that HIV-infection in Dagestan is no longer a condition that affects only drug-addicts and prostitutes and that housewives are becoming infected as well.

“The most common form of infection is parenteral transmission (through injection into the blood),” said Zuvuzhat Tukayeva of the Republican AIDS Centre. “After that comes sexual transmission. Along with drug-addicts, an increasing number of women from remote mountainous villages, who got HIV from their husbands, have been coming to us.”

Albina was infected by her husband. He insisted he was not a sufferer until there was no denying the fact. Albina’s family turned their backs on her and she was sacked from her job. Her husband was also made redundant.

“I appear on television and radio programmes and collaborate actively with newspapers,” said Marat. “Thanks to this, my life has changed drastically. The telephone rings non-stop. The people who call do not ask me how they can avoid getting the infection. They just pour out their hearts to a man, who is one of them, complaining that even the closest people have turned away from them.”

The Republican AIDS Centre reports that there are 879 people infected with HIV and AIDS in Dagestan, the largest autonomous republic in the North Caucasus with a population of around two million. Most of them are drug-addicts. The latest upsurge of infection occurred in 2005, when the number of intravenous drug abusers increased abruptly in southern Dagestan.

In a conservative region where there are strong taboos about HIV-infection, the real figures may be much higher.

“Currently, there are around nine thousand people dependant on weed (cannabis) or a syringe in Dagestan,” said Raisat Sagidova, who heads the ambulatory-polyclinic department of the republic’s drugs dispensary. “And the figure is increasing with geometric progression.”

Marat, Amina, Albina and Kazbek say they try to help everyone who wants assistance, irrespective of how those people got the infection and what their life was before this happened.

“We have reasons for concealing our names,” said Marat. “Dagestani society is not ready to accept people who are HIV-positive yet. And most of our problems stem from our fear of confessing to ourselves and those around us that something has happened. Innocent people suffer as a result.”

“For example, a young man, who is infected with HIV, but won’t tell his parents about this, gets married and infects his young wife. But in the long run, people will find out about his disease.”

Doctors in Dagestan have identified a high-risk group that comprises prostitutes, homosexuals and drug abusers – people considered to have the greatest chance of getting infected. However, most of those who come to SVOI do not belong to this group. That is why the organisation focuses on the prevention of HIV and receives support not only from newspapers, radio and television, but also from religious bodies, such as the official Spiritual Board of Muslims of Dagestan.

“These people propagandise a healthy life-style,” said the press secretary of the Dagestan Mufti, Magomedrasul Omarov. “They are not fighting to halt the spread of the disease, but also help each other. That is why we, of course, approve their activities.”

Since SVOI started work in Dagestan, posters with the phone numbers of the organisation have been posted on public transport and on the walls of buildings in Makhachkala, Kizilyurt and other towns.

“As a matter of fact, I am frequently asked to stick advertisements on my vehicle’s windows,” said the driver of a mini-bus, Jamil. “And frequently I refuse. But these people are offering help. That is why I do not remove SVOI’s advertisement. Let them stay there. Maybe, it will help save someone”.

“We should always remember that HIV-positive people are not lepers,” said psychologist Yelena Mkrtchian. “They should not be ostracised.”

Currently, SVOI boasts more than 30 members.

Locals have long become accustomed to reading about the organisation in the republic’s newspapers or hearing about it on television. However, Marat, Amina, Albina and Kazbek still prefer to remain anonymous, never showing their faces during their appearances on television.

Despite their success and changing public attitudes, they are still afraid of revealing their true identities in public.

Anya Zhuzhleva is a correspondent with Biznes-Zhurnal newspaper in Makhachkala.

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