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I’m going for an HIV
Novaya Gazeta journalists went to visit the focal point of HIV infection and learnt about how the virus has changed strategy and has now started targeting affluent Russians.
In Russia, with every hour that passes, ten people are contaminated with HIV infection. Today, our country occupies third place in the world – after South Africa and Nigeria – in terms of new cases of infection. There are a million HIV-positive Russians. Less than a half of them are receiving treatment. AIDS has entered the Top 10 of causes of premature deaths in Russia. Every day an average of 87 Russians die from AIDS. Two thirds of detected cases, notwithstanding the stereotypes, arise from traditional sexual contact between men and women. In regional terms, the Irkutsk region is a confident leader when it comes to the rate at which the infection is spreading.
In toto, 33,500 people in the Baikal region are living with a confirmed diagnosis. Novaya’s correspondents set out for Irkutsk to discover how this ‘disease of the outcasts’ is now accessing new social horizons.
The Nineties send their greetings
They shouldn’t actually still be here. Along with the diagnosis, the doctors had given them up as hopeless cases. Aleksey Timoshkov was told that he would certainly not live to see 2007. They gave Aleksandr Oskin a tad more – up until 2010. They are former heroin drug-addicts living with HIV. Both learnt of their diagnosis in 1999. Aleksey is in the first hundred on the epidemic list and Aleksandr is already at stage 4.
In 1998 a total of 32 people were identified with HIV in Irkutsk district. The year after this figure had increased almost a hundredfold, to 3,157. At the time there were 30,000 HIV cases in the whole of Russia. The main means by which the infection spread in Irkutsk, as was the case throughout Russia, was parenteral. The point being that Irkutsk was flooded in the 90s with drugs. They could be bought round the clock – and everyone knew where from. Often the heroin dose was shared in the same syringe between several people.
When Lyosha and Sasha learnt of their diagnosis, it didn’t stop them.
– I saw it as the final kick-off – Aleksey recollected. – Game over, that’s it. Not much time left. It was an easy way of manipulating my parents – whatever happens, I am still going to die, so give me money.
Lyosha was a student at the time, whereas Aleksandr was already a director of two clothes markets and enjoyed a prosperous lifestyle.
– Up until 2006 I was shooting up in both arms five times a day – Aleksandr recounts – I know perfectly well who I caught HIV from. He wouldn’t let me be the first to shoot up.
Even though the District AIDS Prevention Centre was already open in 1989, the government closed its eyes for a long time to the problem of HIV. On the other hand, foreign funds like the US Red Cross, the Soros Foundation and Médecins sans frontières had started combatting HIV quite actively.
At State level, Russia acknowledged the problem only in 2006 when the G7 demanded its inclusion as a member. And that included its participation in the programme to combat HIV and AIDS. In practical terms, this meant that Russia forwarded money to the Global Fund which was in charge of purchasing anti-retrovirus therapy. It was only then, in 2006, that medication appeared on the scene for people living with HIV, one that allowed for a reduction of the viral load to zero.
Aleksey and Aleksandr were amongst the first to take part in the Red Cross rehab programme for drug-users.
Aleksey never had any contact with so-called ‘negative’ women (those who are HIV-negative). He now has a wife and two daughters, who were born completely healthy.
Whereas Sasha is on his own. He is now over 50 and has already been living for eleven years in the final, terminal stage of HIV. He has no children. If he had been allowed to adopt, Sasha would have almost certainly done so. But the law forbids adoption by HIV-positive people.
Sasha lives in a flat with his eight-year-old niece and his 80-year-old uncle. The girl’s mother drunk herself to death and the father was never seen. ‘God grant I live to see her come of age, otherwise they’ll take her from me’.
With his grey beard, dishevelled hair, sickly wasting and very quiet, rasping voice, Aleksandr looks like an old man. For a long time he was the manager of a website for HIV-positive people and acted as an ‘equal consultant’ – that is, he offered support to HIV-status people, having had the same experience as them. Occasionally he was asked to come to give lectures about HIV in universities, but now this has almost completely died away.
– For World AIDS Day in December, I posted the following on Facebook: ‘If you need me to come and talk to students, just give me a call. I am not asking for any money. I have a lot of friends who are teachers’. Not a single one replied.
Aleksey chose a different targeted public – and is still working with them. He knows how to speak to drug-users. Once he had freed himself from his own addiction, he joined the Red Cross and branched out with his own NPO, called ‘Navigator’. ‘Navigator’ is aimed at reducing the risk of catching HIV. They don’t try to fight addiction – instead they give out new syringes.
Intravenous drugs are becoming a thing of the past – at the moment it’s all about ‘Spice’ and ‘Speed’. But those of the older generation who are still alive, continue to shoot up.
In previous years ‘Navigator’ reached out to a thousand people a year. And even now an average of ten people come into the office a day.
‘Navigator’s premises are a modest affair in a yellow two-story building opposite Irkutsk’s Central Market – ‘the biggest hotspot in town’. In his unbuttoned Afghan, an emaciated Mikha, looking older than his years, offers unused syringes. Mikha has a walleye. Lyosha has known for a long time now that Mikha is HIV-positive.
Mikh, have you registered with the AIDS Centre?
Haven’t got the time, mate. Who will shoot up for me? Pushkin?
Nowadays ‘Navigator’ is the only organisation in Irkutsk region helping HIV-positive people on the fringes of society. But soon it too will disappear.
All this went pear-shaped in 2012 when the government policy was launched to put a stop to the interference of foreign organisations in the life of the country. NPOs being helped by foreign fund started being branded as ‘foreign agents’. The first NPO to leave Russia was the main source of funding and support – UNAIDS (UN Joint Program on HIV/AIDS) – and the rest followed suit. All that was left to NPOs to hope for were presidential grants. But they are only awarded to what we call ‘vegetarian’ projects of the type aimed at supporting a healthy lifestyle. Who is going to allocate budgetary resources for new syringes for drug-users?
‘Navigator’ only had till the middle of the current year to live. Its only hope was Elton John. The Elton John Fund approached Russia, Eastern Europe and Central Asia with a major grant proposal. Throughout the world the UNAIDS Program to fight HIV is based on the 90-90-90 concept. That breaks down as follows: 90% of the population is tested, 90% of those who have a detected infection receive treatment; 90% of those receiving treatment have an undefinable viral load.
Only in this case will the infection be seen as beaten – and stop spreading across the country. The only town in the world where the 90-90-90 criterion has been achieved is London. Civilised countries try to reach this level.
– What we have is an abyss – says Aleksey. – The Ministry of Health optimistically states that 70% of all cases are being treated. But this is bullshit. More like 40% – and even that is too positive a take.
The AIDS Centre reports an increase in the numbers of people being tested for HIV. But, as a rule, these are not representatives of so-called high-risk infection groups (according to the UNAIDS classification). The figures are hiked up on account of women who can be reached out to through the clinic registers, and then they test children who have been in contact with people who are HIV- positive. ‘For example, I have two daughters, both of whom tested negative. They try to get them in for obligatory testing. They argue that the child is at risk of infection. What risk? How is she going to catch it from me? They do this just to put another tick in the box of tested people that they don’t have to bother with’.
Because reaching out to drug-addicts is more complicated. Gaining the trust of these people and prodding them to go for an HIV test is not easy. But that’s precisely what Lyosha and his ‘Navigator’ website was doing.
-But we know the status of 90% of drug-users, so we don’t need to test them. If they were all brought at one and the same time to the AIDS Centre, the people there would freak out. It’s all very easy to work when the patient comes to you of his own accord and is disciplined.
The main information that Aleksey is promoting is that 75% of new cases of HIV infection in Irkutsk district is caused by sexual contact between heterosexual partners.
-Who is it that infects these women? Answer: they are infected by men who got contaminated in the 90s. Many of these over the last ten years or so fell off the medics’ radar. I know lots of people who were contaminated around then – and forgot about it. People’s psychology works like this: I gave up drugs and – hey – HIV or no, it doesn’t itch and it doesn’t pinch – let it be. There’s the myth amongst drug-users that the test shows up HIV when you stick your neck out. Skip a test and it goes away. And where are these people? At large and in families!
Over the stage there hangs a cross with blue lights. On a big karaoke-like screen the banner reads: ‘O Lord, you are at work in my life. Your blood has washed away my sins’. Live music, live sound. The girl singers move their hips to the beat of the song. The people in the hall have got to their feet and are dancing along and clapping. This is what the Sunday service at the ‘Cornerstone’ Protestant church looks like.
Photo: Vlad Dokshin
– Let’s make noise in the name of the Lord! – you can hear from the stage.
Andrei’s bald patch is lit up in the blue ceiling lights in the last row but one. He’s been coming to the ‘Cornerstone’ for a couple of years now. Like many of those who have turned to the church, he ended up here from the Protestant rehab centre.
He had barely enough money to get to the service from the edge of town. Andrei only found work a week ago – before that he’d been on starvation rations for two months.
In 1994, in the first year after discharge he had killed someone – he was drunk. He hid from the police for a whole year. – I’ve been all over the place – from Sverdlovsk to Vladivostok. – What had he done? He’d been on the wanted list. In hiding.
In Ussuriisk he killed a second time. But this time he didn’t manage to hide. He was given ten years.
When he got out of prison, he went to his mum in Usolye and tried to start a new life – that was in 2006. He found a woman he fell in love with, but something went wrong with the affair.
— To cut a long story short, I lost my grip and started drinking heavily. I must have spent six months carousing – like a sluggishly progressing schizophrenic. Then a mate of mine was let out and fetched up at my place. ‘Andryukha – give me 60 rubles, I’m off to see the gypsies, to buy a dose’.
Andryukha handed over the money. Only not 60, but 120.
Once Andryukha got into a fight and he got put away for three months in a solitary confinement cell. It was there that he was diagnosed as HIV-positive. That was in 2011.
In the beginning Andrei didn’t believe it: ‘I kept telling them: You are just saying that so as to get the AIDS allowance’. He lived with HIV-status for a couple of years with no treatment and at the same time was not treated for tuberculosis. He drank his house away and when he went to the taiga to earn some money with a drinking buddy picking pine-nuts, he was struck down by a series of lurking diseases.
-We were in the cedar wood when blood started gushing out of my throat. That was when I realised that I hadn’t lived a single day. The only time was in my childhood, when I was happy with my mum – till I went into the army. In the army too I was a fully-rounded person. I knew somebody needed me, that I was responsible for something. If they’d said ‘fight for the county’ I would have got into the tank and shot off without a moment’s hesitation. I was part of something. Whereas then I was like the wind in the field. I despaired. I got scared, but all I really wanted was to live. I fell to my knees and started praying, begging God: ‘Lord, don’t take me, but if you do, don’t send me to hell’. It was then that I started to read the Bible a bit. I knew that God existed.
When he returned, Andrei spent six months in a rehab centre outside of town, registered at the AIDS Centre and started his therapy. Only he still hasn’t had his prison tattoo taken off (‘my financial situation didn’t permit it’): on his shoulder he had a knife tattooed, a dragon on his leg and thieves’ stars on his knees.
Andrei is lonely and it weighs on him. He got himself a cat for company.
Photo: Vlad Dokshin
-Then I met a woman and we lived together for a bit. Even before the first date I told her I was ‘plus’. How could I have avoided it? I realised that the date might only last from evening to the next morning. We were grown-ups after all. I said to her: ‘I have a problem: I can’t use a rubber and I can’t do anything without one’. I let her draw her own conclusion. She gave the green light though. We lived together for two years. I was worried all the time and we did continual checks. Thank the Lord, she stayed clean. But she left me. Ever since a worm gnaws at me. I must have fallen for her’.
Dima and the Federal Penitentionary Service
His dark-blue work-issue fleece jacket might conceal his scraggy body, but the tight sweater underneath only accentuates it. Dmitri asks not to use his real name and not to photograph him: ‘In Irkutsk I’m recognised even from behind’.
-Essentially I’m a social worker. Pedagogical education. I work in prisons with individual repeat- offenders. They don’t know I’m HIV-positive at work. I started this job before I was diagnosed. When my contract is up for renewal, I’ll have to have a complete examination. And at that point they might sack me.
I found Dima amongst a group of HIV-positive gay acquaintances on the social network. He found out about his HIV-status six years ago. And already six months later he started receiving therapy.
-For three months I kept wondering: why me? Although I sort of realised who had given it to me. I was honest with my partners. Some left me. I understand them, people were worried about their reputation. HIV is a stigma after all. I went to the AIDS Centre last week. I always get the same feeling there: I’m a good-looking guy, what am I doing there among prostitutes and drug-addicts?
Dima knows about the HIV problem in the FPS from inside and understands it better than anyone. Of the 14,000 prisoners in the Irkutsk district, 2,130 are HIV-positive.
-And there are new cases too: some of them do tattoos and some of them manage to get their hands on drugs.
Behind bars there is no prejudice against HIV prisoners, and for the most part they don’t try to hide their status. But Dima doesn’t make them any concessions: he says many of them try to use their status to gain advantage over others.
-They say: ‘I’m positive, I can’t do this or that’. What’ye saying? You need sanatorium conditions inside? OK, so some have been positive since birth. But you’re a man first and foremost. Behave like one. They say: I’m being maltreated. But that’s not the problem: how is it you ended up here for the sixth time already? You should sit quietly in civvy street with your turbo-HIV and get treated!
Dmitri’s status and sexuality doesn’t get in the way of work – he says he doesn’t have time to discuss it with colleagues, although he thinks that a lot of them have put two and two together.
-You don’t get it that I went to work in the prison-camp? There was a job going and I went for it. I agree, it’s not very cosy and I’m continually on edge. But on the other hand, I’m financially independent. I can’t go abroad because I don’t know the language. And anyway, what would I do there? Be a cleaner?
His family often asks the 38-year old Dima about a wife and children.
– I say: I’m OK as it is. I give them the example of my kid sister: she got married, then divorced – and so what? Is she any happier? My family doesn’t know about my HIV-status or anything about my sexuality. They wouldn’t understand – it’d be a shock, traumatic. I have my own circle of friends from 15 years back now. I’ve found my comfort zone and live there.
The ‘Mix’ and LGBT
On the stage three gorgeous girls are singing to playback ‘The girls are standing there, standing on the side…’ Their above-the knee short skirts reveal long legs in high heels. Ideal hair-dos and ditto make-up.
These girls are men though, artistes in a drag-show. Tonight’s performance is in honour of Women’s Day.
-May everything be OK with you and not go mouldy down below! And you get somebody to seed your bud.
‘Mix’ is the only LGBT club in Irkutsk. At the entrance, the manager, surrounded by security bouncers, sees some unfamiliar faces:
Photo by Vlad Dokshin
– Do you realise where you are going? he asks me and my companion, screwing up his eyes.
It’s cramped inside. ‘Mix’ needs no advertisement. The club is six years old and it has a membership of faithfuls.
The girl DJ with short-cropped hair puts some music on. The repertoire? The latest Russian pop-hits. Over the DJ’s controls hangs a notice: ‘If they ask for Olga Buzova , 500 rubles to pay’. But soon they include her anyway.
According to WHO and UNAIDS criteria, men who have sex with other men fall in the HIV risk- group.
According to the data of the Open Health Institute Foundation, the average incidence of HIV-infection amongst gays in Russia is 18%. But at national State level no preventive work is done with them. So somebody has to take it on: in in Irkutsk it’s Evgenii Glebov and Stas Fedyakin.
On the entrance door of ‘Mix’ hangs a placard: ‘Come in and have an HIV test. For the sexually endowed’. Thanks to Zhenya’s and Stas’s efforts you can be tested here, anonymously, and on a regular basis. A test like this costs 500 rubles at the pharmacy; the club’s regulars are recommended to have a test every four months. It’s not every student that can afford that kind of money on a regular basis.
Photo by Vlad Dokshin
In addition, Stas and Zhenya are trying to establish contact with the AIDS Centre. Zhenya told us how he started out:
-We tried contacting the Centre, sent off requests and were fobbed off with formal replies. Finally I just made an appointment to see the doctor in charge, pretending to be a patient. We took her a manual on how to talk to HIV-positive people, published by our LGBT ‘Feniks’ and ‘Parni +’ support organisations. She was surprised and said: ‘Why didn’t you give it to us before?’
However, when the guys came for training organised by the Centre, the trainer warned them that LGBT matters would not be treated. ‘That’s the advice we received from the Ministry of Health and the Department for Combatting Extremism’.
-If I’m gay, I must be HIV-positive – that’s the mindset – says Zhenya.
-One doctor I know said to me: ‘This is God’s punishment of gays. Watch out, He will punish you too!’ My district GP told me to my face that the infection was ‘caused by you’. But there’s no point in blaming them, we need to cooperate with them’.
-We asked the AIDS Centre to organise a lecture for us by an STD specialist, Zhenya told us.
When she learnt of it, she said: ‘I have no intention of putting on courses for butt-pirates’.
A year ago Zhenya organised a showing at the ‘Mix’ club of the film ‘Positiv’, a documentary history of people living with HIV. On that occasion staff from the AIDS Centre came along too.
-They saw we weren’t all positive and they had no reason to be afraid of us.
Although it should be said that a week after showing the film at ‘Mix’, a raid group was organised. All the visitors were pinned to the wall and searched for drugs.
‘Funny, you don’t look the type’
When her husband found out that Irina was HIV-positive, he gave her an individual plate and a special towel. At the time she was pregnant and had been carrying their child for two months.
Photo: Vlad Dokshin
The child was born healthy. And yet Irina’s diagnosis was reconfirmed.
She says she did not cheat on her husband.
-How did it happen? She said alarmed. They say HIV is the disease of druggies and prostitutes – where does that leave me? The medical transmission route of HIV infection is always passed over in silence. Although there have been several cases of HIV infection caught in Irkutsk hospitals and proven in court.
Irina is a fine figure of a woman: long black hair, carefully manicured, classic style and long fur-coat. After the birth of her son, she kicked her husband out. Six months later little Nikita was taken off the register.
It was difficult for Irina to accept her status. The AIDS Centre used to be located at Sinyushka (Sinyushennaya Hill on the left bank of the River Angara).
-You go there – get out at the stop and they don’t exactly point a finger at you, but everyone realises where you are going. You see the gynaecologist, she finds you’re HIV-positive and says: ‘Funny, you don’t look the type to shoot up!’
Sixty percent of women diagnosed with HIV find out about the diagnosis during their pregnancy. Like Ira. Now she helps women like herself to overcome their fear.
-I always reassure them: if you drink the therapy and have a Caesarian, you have an almost 100% chance of giving birth to a healthy child.
All Ira’s nearest and dearest know about her diagnosis, but she doesn’t dare go public, mainly for fear of her child getting bated.
– Thanks to the diagnosis, I actually prospered financially. You realise that life is finite, and there’s no time for preliminaries. Now I have gone back into business and can afford to do what I want. In Irkutsk I am a legend. I know guys, ordinary drug-users, who have successful businesses and a car worth one and a half million. On the other hand, I see my neighbour who is not HIV-positive and who works for 12,000 as a bodyguard. Tell me, what kind of a kick do you need to start working?’
Irina has got married again, this time to an HIV ‘positive’. He caught HIV during the Chechnya campaign – brought it back and got contaminated by non-sterile medical instruments. They met through Internet.
-He came to find me from a different town. On the third day after meeting, he proposed…he’s been gone now four years.
Now Ira is being courted by guys without diagnosis. But she doesn’t agree to date them. She doesn’t want to have to explain once again how she got HIV infected.
-I’m probably going to say something dreadful, but it’s easier to find a man who is HIV-positive than one who isn’t. I have a sister who divorced and registered with a dating site; nothing but creeps and married men on it. I said to her: ‘Log into our site – that’s where you’ll find the handsome guys’. Our boys value the family more.
-The investigator tells me: ‘There are no witnesses to your having sexual relations. What do you want now? Go and have a sip of beer and relax’.
This is not the first time that Polina has told this story, but each time she does, her voice betrays sincere surprise. Polina was not raped – her ex-husband contaminated her with HIV.
Article 122 of the Criminal Code of the Russian Federation is entitled: ‘Contamination with HIV infection’. The offence entails a sentence of up to five years. 56 people were convicted under this article in the course of 2017, and 21 of them were sentenced to real terms of imprisonment.
Polina met K. on the Internet. Their affair developed briskly: they both wanted a family. K. moved her things into his flat. He was living with his three-year-old son.
-When K. offered not to use a condom, I told myself: but you said you wanted children and I thought: ‘I’m behaving like a real hypocrite. I moved in with my things and here I am acting up again’. So I gave in.
Two weeks later Polina fell unexpectedly ill. Her temperature shot up, and she felt weak. Her beloved told her: ‘Better go back to your place, otherwise you’ll give it to the child’.
Polina returned home and from there soon ended up in hospital – where they told her that the diagnosis showed HIV. Polina explained that K. had deliberately contaminated her with HIV – and not just her either.
-By chance I got to know one of his classmates. I said: ‘What can you tell me about this man?’ He expressed surprise, replying: ‘What? Is he still alive? He was a drug-user even at school’. From his schooldays he used heroin. So it was that, one by one, I learnt of his ex’s, who had also been infected by him.
When she met K., Polina was taken in by the fact that right from the start he trusted her with his three-year-old son. True, the little boy had not been very attentive to her: all the time he would call her other women’s names. Later, under interrogation by the investigator, the neighbour on the same staircase said that a stream of other girls had come to K.’s flat before Polina. And almost certainly afterwards too.
She decided to take this former beloved of hers to court.
-What else could I have done? The man has to be stopped. Who will do it, if not me? At this very moment he’ll be hanging out with another one.
There are tests that can demonstrate the duration of the contamination and even identify the ‘donor’.
The time Polina acquired HIV had been less than nine months since the story broke. Another test – sequencing analysis – showed that Polina’s and K.’s biological samples clustered together. Which demonstrated that they were linked. The investigation revealed that K. had been registered with the AIDS Centre since 1999.
-I want them to put him in prison, says Polina. – But I attended a consultation at the Public Prosecutor’s Office. The lady prosecutor laughed at me: what do you think you’ll get out of it? here they get a conditional sentence of 18 months for murder – in his case he’ll just get a ticking-off.
The Dance of the Little Condoms
There’s a scene in which two condoms are dancing to jolly music. They sing: ‘In winter, in scorching summer, in autumn and at New Year //You take him with you, he won’t let you down. // If you are without a condom, knowing the risks beforehand, // In the heat of passion should fall into the abyss, why, that will be the silliest fling of your life’
Photo by Vlad Dokshin
This is a creation of the Irkutsk AIDS Centre, recognised in 2017 as the best in Russia in terms of informing the public about preventing HIV-infection and viral hepatitis strains (according to data from the RF Ministry of Health ‘The best AIDS Centre of 2017’).
The author and performer of this song about a silly fling is the Press-Secretary of the Irkutsk District AIDS Centre – Vasiliy Buchinsky.
He started working at the AIDS Centre four years ago and has broken through the information blockade. If, at year-end 2014, you had gone on Yandex and searched for ‘HIV Irkutsk’ you would have seen the whole of the first page under the title ‘HIV is a fabrication’. Somewhere half way through the second page, the tune changes: ‘Irkutsk is dying from AIDS’ – and that’s it, no more information.
Once he started working with the local media, Buchinsky realised that the journalists were not reacting to press-releases about the spread of HIV throughout the region.
-In town we have a lot of media that can barely make ends meet, so for them advertising contracts are like manna from heaven. They were apprehensive about running news like ours for fear of scaring the advertisers away. So this is my thinking: 1.5% of your potential readers are infected. That’s more people than the entire circulation of your newspaper! I publish a press-release – and in half an hour I get a call from government representatives: ‘Write that kind of stuff again and I’ll make your life merry hell’.
But Vasya started rocking the boat all the same. His one aim was to get people in town talking about HIV. The means you used to achieve that did not matter. Even if it was extravagant: posting all over Irkutsk ‘HIV-infected posters’ with a dried-up drop of blood taken from a girl living with HIV. This of course was a shock for the town.
In 2016, the lower part of town, the AIDS Centre activists set up an installation of condoms (in packs), spelling the word AIDS. You could tear them off and take them. By the side, the Dance for Life activists performed their dances. The Civic Chamber took note of the demo and submitted a complaint to the Prosecutor’s Office, claiming that instead of combatting AIDS, the activists were encouraging the sexual abuse of minors with their ‘condom dancing’. It was this that gave Buchinsky the idea of “The Dance of the Little Condoms’.
The costumes were ordered from a firm making life-size puppets. They were made up according to sketches for rocket costumes: the first one came to 32,000 rubles, but the second was half of that. You dive into the condom and it’s all soft inside. You feel safe.
Vasya was born in Irkutsk but grew up in the Leningrad micro-region, a hub for drug-users. He remembers how some lads from his yard were buried – ‘died from unknown causes’. Only afterwards he began to realise that they had all been injecting drugs and that many had HIV.
-In Irkutsk one in every fifty is HIV-positive. Divide the block of flats into 50. An overcrowded bus by 50. Walk down the street and do the same division. Only then will you grasp the scale of our epidemic. At the last round-table meeting of the Civic Chamber, they said: Here’s Irkutsk region – an area where all the world’s programmes combatting HIV infection have been tested out – and there are no results. I sat silent. They meant they had got no results. Whereas we had extended the range of testing and Irkutsk had taken in the oblast’ – statistically speaking, incidence had gone down by half a percent: that is called stabilisation.
I go to see the doctor-in-chief at the AIDS Centre, Yuliya Kimovna Plotnikova, to ask why it is that the stigma against HIV is still so strong in Russia.
— It seems to me that we are shouting from the rooftops to all and sundry that it’s a good thing to get diagnosed as soon as possible, she said. It’s not a sentence, but means your life is saved! Plotnikova said heatedly.
-Previously HIV was seen as the disease of social outcasts, but now everything has radically changed. Now the patient-profile is different! But in people’s mindset it’s still the same: HIV means outcasts. The majority of young people understand that you have to take precautions, but they complain about the price of condoms, arguing that they can’t afford them. But they are active, they have to have a sex life. The Church can try to impose its rules on us…but I’d like to know who it is who hasn’t had sex before getting married? I feel like going along to the Registry Office and asking: is that still a possibility?
Yuliya Kimovna reminds us that the stigma in the medical community and HIV-dissidence to all intents and purposes originated here in Irkutsk district. The town is home to a certain anatomical pathologist by the name of Vladimir Ageyev – the guru of HIV denial. His position is grossly rudimentary: he maintains that in doing autopsies on, and researching into, drug-addicts, the majority of whom were registered with the Irkutsk AIDS Centre as HIV-positive, ‘they all died not from some AIDS-related cause, but from perfectly ordinary illnesses – sepsis, various types of hepatitis and tuberculosis. He thinks HIV is a ‘piece of monstrous medical mystification’. Ageyev still works today at the Irkutsk Medical University.
-I have taught all my life at the Medical University – says Plotnikova. The students would come to my course on infectious diseases after his on anatomical pathology. Their first question when it came to HIV was always: ‘Does it really exist?’ They come along already in denial.
In Russia there is no such thing as liability for spreading HIV-denial.
‘Everybody was dragged in’
Three women living in a rented first-floor two-bedroom flat. They are colleagues. All of them sex-workers. According to UNAIDS terminology, sex-workers also fall into the risk category. 15% of them, according to a survey carried out by the Open Public Health Institute, are infected.
Marina (age 36) is shredding onions. It smells of chicken broth cooking on the stove. Marina throws a bay leaf in.
-There were 32 of us in my class when we left school, and there are 16 of us left. The others either took the golden route (i.e. the golden dose – deliberate injection with a fatal dose – Ed.), or just overdid it with the needle, Marina explains.
—I have two degrees, — interrupts Kristina (age 42), with shaven temples and ying-yang manicured nails. – But our generation went through the meat machine.
The women smoke even in the kitchen. On the table lies a ‘Forward Russia!’ lighter. It will soon be time for lunch, but none of them is made up yet – they’ve only just woken up – for beauty’s sake only tattooed eyebrows and studs in their noses.
‘Where else can you go and work in Irkutsk?’ say the girls, surprised. The average wage everywhere is 15,000 rubles (230 dollars), whereas here, even without trying, you can easily pick up 15,000 in one night. With this kind of continual income, you quickly get hooked’. So there they are, hooked in the sex-service sector for more than ten years now.
-There are very few nymphomaniac girls. They come into the profession mainly to be able to feed their kid or because they’ve got a crippled mother. No-one comes here by choice or for pleasure. I came to it in 1998, I had a small kid to look after. I’ve been here for 23 years now, and not for pleasure either. But you get dragged into it, you get used to good money. You just have to take that first step….
-Then you buy a car on credit plus you’ve got the kid to look after. Then after that a mortgage for a flat…It’s a whole chain reaction.
Another Marina, age 26, the youngest of the girls, comes into the kitchen. She’s in skimpy homely shorts which show off her smooth, long legs. This Marina has come from Ulan-Ude. She belongs to another generation, but goes along with the thinking of her older colleagues.
-All my classmates work as prostitutes, they’ve all been sucked in.
The girls say that recently ‘any old riff-raff’ comes into the profession. Lots of drug-addicts, but mainly those on synthetic drugs. They don’t pull any punches, they say straight out that they’ll pay their way for drugs with sex.
The irresponsibility of their young colleagues seriously increases the risks for the whole sector. That’s why the two Marinas and Kristina have a strict rule – they refuse to work if the client asks for it ‘without a condom’. Although there are some who for extra pay don’t refuse.
-One girl from our firm did go to bed with one of these guys and then my client asked ‘for the same’, the younger Marina said indignantly. – They’re nettled that the feeling isn’t the same with a condom. If she agreed to, you go and sleep with her, I said. Without a rubber, I can only wank you off – but that you can do yourself. I have a guy I am already…in May it’ll be one year. It’s as if I’ve known him for ages. But even with the faithful ones – no condom, verboten.
-If a client says ‘without a condom’ – bye bye. It’s the 21st century. Our girls are more afraid of catching something from the client and the clients themselves. Every other one whines: ‘Come on, I’m married!’, ‘I’m clean!’
– But I know a girl with HIV who works. But she’s always in therapy, registered, always anxious about her health. She lived with a bloke and caught it from him.
-He’s popped his clogs already though.
-She learnt he was a drug-user too late. His mother told her when he died.
– Many new young girls come to work from other towns and even villages. ‘Navigator’ was our ABC and once used to be for sex-workers, they used to have a full programme – information about infectious diseases, did HIV tests, gave out condoms, ointments.
-Write that we are very upset that ‘Navigator’ is closing down – they were the only ones to support us in this town. They didn’t just give out free rubbers, they had a socially important mission!
A beige-coloured Shar-Pei called Docha wanders slowly around the flat – in nappies. Docha is old already. Everyone loves her.
While they cook macaroni, we discuss morals.
-Let’s not just talk about prostitutes – the people are nasty here. Whether you’re HIV, crippled, whatever – they all try to rub your nose in it, look away, turn up their noses. It’s our mentality. It’s always easier to judge.
-I have a friend who died from HIV. She was an ex-druggie, but a lawyer with higher education – a really clever woman, from an amazing family. When her mother found out she’d got it, she rejected her. How can you do such a thing? My brother’s HIV too. Brought it back from Egypt. The doctors told him straightaway that that kind develops differently from the one here.
I asked the girls whether they dreamt of going somewhere else and leaving Russia.
-I wouldn’t leave, not for any money, blurts out Kristina. Even if I get into a depression – I jump on a train and dash to Lake Baikal– I’m very proud I speak Russian. How can you trade that in? I was born into another generation: we grew up with grandpa Lenin, they drummed that patriotism into us as early as kindergarten.
In a three-storey cottage in the centre of Irkutsk tonight there’s a ‘Searchers’ party. No admittance without invitation or a partner. This is no ordinary party.
On the ground floor there’s a dance floor and eats. If you’re invited for a dance here, it’s no simple dance but one that comes with far-sighted plans. Plans that can be realised in the next fifteen minutes.
The ‘Searchers’ are the Irkutsk swingers. Mind you, they’re not only from Irkutsk – people come here from all the outlying regions and sometimes even from abroad.
Nowadays, statistically speaking, 75% of all newly detected cases of HIV infection in the Baikal region (and about 50% throughout Russia) come about through heterosexual contact. Where better to go and talk about safe sex than a club for its professional devotees?
On the first floor of the cottage there’s a sauna and pool. Higher up though is the area for realising your desires.
Nobody is guaranteed sex at a ‘Searchers’ party, even though you can propose it to anyone. There is a rule though: the rule of ‘only one no’: if you’re refused, you must not insist.
-The main rule of the party is: ‘put it on, go in, come out- and take it off’ – the compere in charge of the ‘cultural programme’ announces from a small stage. He means condoms.
It’s just not on to be caught without a condom in the ‘orgy area’, on a big leather couch or the 4m x 5m sex-tatami mat. Any infringement meets with exclusion from the club.
-It’s really narrow-minded to suggest that swing-evenings are dens of vice, debauchery and hotbeds for the transmission of all kinds of sexual infections, including HIV, says Aleksey, the creator of the ‘Searchers’.
It all began three years ago when Aleksey met Alla. Both of them had experience of family life behind them, and now the desire to conquer new horizons. They started with advertisements entitled ‘Get to know people who think like you’, then got together a group with the same interests and rented a sauna for everyone. The ‘club’ grew to a membership of 500.
The ‘Searchers’ club only accepts married couples who have been wed for 7-10 years.
-The exclusive nature of the club is a guarantee of safety, Aleksey explained. – To join, you have to send in a photo and an application. People who are not literate (spelling mistakes, for example) have little chance of becoming a member. How can we let in folk who can’t put two words together? We don’t allow weirdos or outcasts in. On the other hand, we are not elitist, and we don’t operate any ageist or weight discrimination. Welcome, if your mindset and outlook coincide with ours.
‘I think you can say that swing nowadays is the guardian of family life’, the founder of the ‘Searchers’ explain. The notion of marital fidelity in sexual terms has had its day. 95% of men have sex outside of the marital bedchamber and about 70% of women do the same. It’s already a norm of modern life. What does refusal to admit this bring to family life? Deceit, cheating, break-up, unhappiness.
Swing is sexual enlightenment, not debauchery. Relationships between swingers are built on trust, people in the club can enjoy contact with others under specific, negotiated conditions. Swinger couples fall apart much more seldom, Aleksey assures us.
However, Russian society, as opposed to these party-goers, is not yet ready for such a free interpretation of wedlock. And herein lies one of the reasons for sexual infection being brought into the home. Aleksey and his comrades-in-arms call the world in which relationships between the sexes are built according to a traditional ‘romantic’ scheme ‘snowflakey’.
-How does it pan out in the snowflake world? At the new year’s eve staff party they have a glass or two and then shag. Are you married? What about yourself? Nobody worries about safe sex. My snowflake friends, when they go to a prostitute, a condom is obligatory – but when you sleep with your secretary or the accountant you wouldn’t dream of taking a condom along!
-I’ll be wearing black lipstick – says Anya as we agree to meet.
Nothing else sets her apart from other teenage girls who look younger than their age, although she is already 18. Anya dreams of becoming an animation-artist, and also, one day, of having a family. She lives in a dormitory, sharing a room with two other girls.
Anya’s mum’s story is one we have heard in Irkutsk dozens of times. In the mid-nineties she fell in love with a drug-addict. But all that is water under the bridge. Anya’s mother has already been dead now for ten years. But there is still Anya, who was born with HIV. There are 747 people like her in Irkutsk district and 113 of them are under 19.
Up to the age of 16, Anya knew nothing of her diagnosis. Her grandmother, who, to all intents and purposes, brought her up, would just give her pills all her life. And would give her a good telling-off if the girl took them at the wrong time.
In 2016 Anya’s step-father died. Her grandmother then realised that she couldn’t keep it secret from the girl what was wrong with her.
Anya bears no grudge against the world – she is open about it and free. The only reason she wears black lipstick is that she likes it.
-People often don’t understand and judge by appearances. But the lipstick doesn’t say who I am, no more than my HIV or the colour of my eyes. Stigma is about fear – but there’s nothing to be afraid of.
She doesn’t want to repeat the fate of her family.
At present Anya is studying at a technical college, a special one – for people with disabilities. She is hard of hearing, ‘but there are worse cases’, she says.
Not so long ago a specialist from the AIDS Centre came to deliver a lecture in Anya’s Tech on HIV. Anya hinted to the rest of the group that it was for her benefit.
– I was asked by a boy who is also HIV-positive ‘Are you crazy – do you want to shout it out from the rooftops?’ I thought about it and said ‘I have the right to – if I want to, I will!’. He was frightened I would be snubbed. I don’t see my HIV status as an obstacle. For me it’s a sort of prism through which I see the future. If I didn’t have it, I would sit back and not bother to fight. My status is the engine that makes me live, it motivates me. Everything’s just fine – I take my pills and I know where to get hold of them.
Many of those who had therapy from the 80s onwards are still alive to tell the tale.
-My only fear in life is if the pills disappear or that I take them at the wrong time.
In 2018 the Ministry of Health increased the budget for medication for HIV-positive people to 21.6 billion rubles. This money is only enough for the needs of 260,000 patients. Yet there are as many as 26,000 registered with the Irkutsk AIDS Centre alone.
The State Duma has before it a bill on ‘response measures to unfriendly actions by USA and other foreign states’. How that will affect people living with HIV is as yet unclear.
The average age at which an HIV-positive person dies in Russia is 38.