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Last Updated: Friday, 1 December 2006, 01:34 GMT
HIV stories from Russia
Sveta (L) and Ilya

As part of the BBC's coverage of World Aids Day on 1 December, BBCRussian.com spoke to four Russians living with HIV.

Ilya and Svetlana (Sveta) are a married couple from Moscow. They are both HIV positive. Sveta was the winner of Miss Positive 2005 - a Russian beauty contest for HIV positive women.

Ilya: In 2004 I was diagnosed with HIV. I contracted it through sexual intercourse. I got married recently to Sveta.

Sveta: In one month I will be 26. I have been living with HIV since 2003. I am expecting a baby.

The decision to have a baby came naturally to us after we got married. We didn't even talk about it.

We did talk about the need to get tested for other diseases, to be on the safe side. But we had no doubts - we were so happy we were going to have a child.

Doctors have asked me what we will do if our baby is born with HIV. They have asked us if we are afraid.

A paediatrician phoned me and said: "Sveta, you dyed my hair last week. What will happen now? Could I get it [HIV] through my hair?" I said to her: "You are a doctor, how can you say such a thing?"

When I got pregnant we both had this inner fear. But we try to chase these worries away. We try not to think about it. I am sure that our baby will be healthy. But still there is always a tiny tinge of worry.

Ilya: Aids is not a plague. One can and should go on living with this disease.

Sveta: But some people don't realise this. I was raised in a little village, around 160km from the town of Cheboksary, the capital of the [Russian republic of] Chuvashia. I am a hairdresser by profession and I also do people's nails.

I used to live in Cheboksary and would come to the village occasionally to do people's hair. Everyone knew me in the village. They all used to wait for me to come.

However, once they found out I had HIV, it became a terrible thing. I returned to find people just standing in groups to watch me passing by. They pointed their fingers at me and whispered to one another. This was very difficult for me.

Eventually some people still invited me to cut their hair. But others said: "Don't go to her to get your hair cut, she will scratch your head."

A paediatrician phoned me and said: "Sveta, you dyed my hair last week. So what will happen now? Could I get it [HIV] through my hair?"

I said to her: "You are a doctor, how can you say such a thing?"


Roman

Roman contracted HIV in 1994. He lives in Moscow and works for a group advising people living with HIV.

When I was first diagnosed, I felt as if it was written on my forehead. I thought when people saw me they would jump on me and start beating me up.

My positive attitude has allowed me to go on living until today.

The attitude of society has also changed, especially among younger people, who are more tolerant. As far as the older generation is concerned, their attitude has been changing, too, but very slowly. Older people are more conservative. They were raised in a different environment, in the Soviet Union, so their attitude has, unfortunately, remained negative.

My job includes teaching HIV-positive people about antiretroviral therapy - how to take it, how to maintain commitment and how to achieve good results through treatment.

More people with HIV need to contact specialised centres so that they can live longer and have better quality lives
If one also compares the authorities' attitude to what it used to be five or 10 years ago, it has changed. I cannot say that it is very positive, or very good, but it has changed.

Unfortunately in Russia everyone tries to make money from every problem. So as soon as the federal budget [allocated for HIV prevention and treatment] is increased, immediately half of it or even more disappears into nowhere.

Money that was allocated for medicines disappears without the medicines being bought. This is what always happens.

Also, medicines are purchased and delivered to regions, but often because of problems with customs, or because someone failed to pay someone, deliveries are delayed. This is dangerous for people undergoing this therapy.

The therapy has spread geographically, however, to more Russian cities thanks to the federal budget and the Global Fund to Fight Aids, Tuberculosis and Malaria.

Also, more people with HIV need to contact specialised centres so that they can live longer and have better quality lives. In these centres they can do blood tests, monitor their state of health and start therapy if needed at some point, as it is now becoming more accessible across the country.


Yuri

Yuri was diagnosed with HIV in 1999 while he was a heavy drug user. He lives in Moscow and works for a HIV hotline run by the Shagi, or Steps, organisation.

In 1996 I started taking heroin. In 1997 I switched to methadone.

When I was diagnosed with HIV it was not really a blow for me as my brain was in a constant fog. The realisation came later when I gave up drugs.

The doctor had told me with my lifestyle I had about five years to live. If I stopped taking drugs, he said I had about seven years. Back then there was no talk of treatment.

Usually the problems are the same for everyone - whether to tell their family, how to tell a partner, because they've been living with their partner without using protection
The HIV virus is shrouded in myths. One of the myths is that drug therapy will kill a patient sooner than HIV itself, when it leads to Aids.

Another is that the therapy is very toxic, that side affects are too heavy, and that it is impossible to live with them. But these are myths.

Many people call the hotline simply because they need moral support. They need someone to be near them and simply support them. Not necessarily someone to tell them they will live and will get treatment.

They need someone to simply tell them: "You are not alone." We invite people to groups and informal meetings to offer them support.

Usually the problems are the same for everyone - whether to tell their family, how to tell a partner, because they've been living with their partner without using protection. It is scary to tell others these things.

The situation is changing in Russia. People are becoming more tolerant, there is less discrimination. But this is as far as Moscow is concerned. I often travel to other regions for work.

The situation is much tougher for HIV patients there. In the regions people have less information and therefore more myths, which result in a stigma and discrimination against HIV positive people.

I know of cases when people were put out of their homes, not to mention people losing their jobs, and their children being expelled from nurseries.

I have a collection of t-shirts with the logo 'HIV positive'. I wear these t-shirts because if it catches someone's attention they will think about the message behind it.

When I decided to disclose my status three years ago, I first of all asked my mother for permission.

Because I knew people at her work would recognise my face and this could have negative consequences for her. She said: "If you need to do this, do it."




SEE ALSO
'Hopes high' for HIV conference
11 Aug 06 |  Health
Russia's Aids timebomb
03 Dec 03 |  Europe

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