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We’ll be living with this for a long time

In Ekaterinburg, one person in every 50 is HIV positive. A report from the frontline of what some people are calling Russia’s HIV epidemic. Русский

A mobile medical centre for AIDS treatment and prevention in Ekaterinburg. (c) Pavel Lisitsyn / RIA Novosti. All rights reserved.I’m standing on the square in front of Ekaterinburg’s Megapolis shopping centre. A mobile testing unit is due to turn up any minute now, but it’s held up. I ask the centre’s security guard, who’s wrapped up from head to toe, where the van usually stops, and he motions towards the space between the shopping centre and the metro station. It’s 26 degrees below zero and I have to nip into a café every five minutes to warm up and phone the city’s AIDS centre, where they assure me that the minibus will be there any moment.

Andrei Guselnikov, the journalist at the Ura.ru news agency who first broke the news of Ekaterinburg’s HIV epidemic, tells me that the minibuses used by the AIDS centre were not designed for this type of work: they are too cold and cramped and they are always breaking down. I’m worried that it might have broken down again.

A month ago the staff at the AIDS centre, in an effort to publicise their lack of funding, announced that Ekaterinburg was in the grip of an epidemic: 26,693 people were registered as HIV positive – one in 50 of the city’s 1.4m residents. The Sverdlovsk region, of which Ekaterinburg is the capital, has the highest incidence of HIV in Russia: 1,182 cases per 100,000 inhabitants.

There are ten regions in Russia where more than one percent of the population is infected with HIV, and 20 out of its 85 regions account for half of all cases. The worst hit areas are Sverdlovsk, Irkutsk and Samara regions, where nearly two percent of the population are living with the infection. This year the millionth Russian HIV carrier was registered (and that’s just the official figures): 270 cases are registered every day across the country and 50-60 people die every day of AIDS. And with more than one percent of its population living with the infection (link in Russian), Russia has one of the fastest growing HIV epidemics in the world.

Waiting in the cold at Megapolis shopping centre, Ekaterinburg.I’m waiting for the minibus because it’s the only way I can talk to the AIDS center’s staff. After the explosion of media interest earlier this month, the regional health ministry banned them from speaking to the press or making comments on the subject, and the ministry itself also refuses to comment.

The city’s mayor, Evgeny Roizman, tried to explain the authorities’ stance to me: “Medics who tell the truth about the situation can end up with problems. The Ministry of Health understands the situation and is trying to do something to remedy it, but they’re afraid of bad publicity. They are told to keep quiet, and ‘find some good news to write about’.”

“Aha, so that’s why the press tell people about the measles epidemic that’s affected 20 people in the region instead of HIV,” Vitaly Korotkikh, a HIV activist, tells me with a grin. The 28-year-old has been living with HIV for 11 years, and is the only openly gay person with HIV in the whole of Ekaterinburg. In a city where almost two percent of the population is infected with the virus, it isn’t easy to find someone ready to tell their story. Although discrimination against HIV positive people has been outlawed in Russia since 1995, many people have lost their jobs, experienced bullying at school and refused medical treatment.

Vitaly Korotkikh, a local activist for HIV-positive people.Many are also afraid to talk about their HIV status even to their family. “When I told my mum I was HIV positive, her reaction was, ‘but we had such high hopes for you!’, as though I was dead already. It was really hurtful,” says Vitaly.
Another person I spoke to, Yelena (not her real name), was so scared of declaring her diagnosis that she asked me not to tape her answers. She is 35 and found out about her HIV status 11 years ago, when she was pregnant. She refused medication, her son is now 11 and despite advice from a psychologist to tell him about her diagnosis, she hasn’t done so — she’s afraid he’ll tell other children.

No worse than anywhere else

Ekaterinburg is Russia’s fourth largest city. It is the capital of the Urals, an industrial centre with huge factories, skyscrapers and metro system, not to mention a gigantic new commercial centre, Ekaterinburg-City, which is under construction.

It also boasts the Yeltsin Center, a memorial to the first president of post-Soviet Russia and a native of Sverdlovsk, which looks every bit like a European modern art museum. It has become a haven for liberalism and place of pilgrimage and employment for Moscow intellectuals.

Many people with HIV are afraid to tell their family and friends

In Russian terms, Ekaterinburg’s current city administration can also be called liberal. Mayor Evgeny Roizman does not belong to the ruling party, and instead of the standard photo of Vladimir Putin, he has a portrait of the Nobel Prize-winning poet Joseph Brodsky hanging on his office wall.

“Why does Ekaterinburg seem to be the centre of this HIV epidemic?” I ask him.

Mayor of Ekaterinburg, Evgeny Roizman.“In the first place, you have to understand that the situation is the same in Novosibirsk, and in other cities — Irkutsk, Saratov, Samara, Tolyatti — it’s even worse. Our region tops the table for the number of HIV-positive citizens, but here, unlike other regions, our services work better and there is a higher diagnosis rate. And in the second place, in the early 1990s Ekaterinburg, because of its unique location on the border between Europe and Asia, became a transport hub for drugs traffic from Tajikistan. HIV began to spread from drug users to drug dependent prostitutes, and from them to every population group.”

Roizman began his public career by taking on the drug dealers and building rehab centres for users that became known, and heavily criticised, for their brutal, cold turkey approach to treatment. I asked him whether Russia’s narcotics policy should be changed to help deal with its HIV problem. Despite the growing proportion of cases where the infection has been transmitted via heterosexual contact, 56% of infections are still caused by drug addicts’ needles.

“In the 1990s we had a choice,” Roizman tells me. “Either we focused on reducing the associated problems or we tackled the issue directly. And we decided to tackle it. Nobody in the west can imagine what a real drug disaster is like: in our situation, handing out needles would have been like adding fuel to a fire. And I learned from Ukraine’s experience. They went with the western practice of drug replacement therapy: they had a horde of heroin users whom they supplied with methodone, but all that happened was that the addicts ended up using both. Plus in 2010-2011, 280 doctors were prosecuted for dealing.”

Methods and medications

Dr Marina Khalidova, director of the regionally-based Novaya Vremya Foundation, disagrees. “We’ll never deal with HIV without drug replacement therapy. While some people go to the AIDS centre and have the chance to get medication, the vast majority don’t go near it and don’t get any treatment. Their condition and lifestyle don’t allow them to follow a treatment programme. That’s one reason why so many countries use methodone programmes as the core of their HIV treatment. It’s very difficult to get users to come here to get pills: their chronic ill health is of secondary importance to them. But they’ll come for a dose of the drugs on which they depend and get treatment at the same time.”

Dr Marina Khalidova, director of the Novoye Vremya foundation.Khalidova has been working with HIV in the region since 1998, when the virus was still closely linked to drug abuse. She tells me how surprised she was to learn that the city had just announced the epidemic: “It’s been an official epidemic for 16 years now, since 2000.” Khalidova shows me the figures for the Sverdlovsk region: in 1998, there were 136 people registered as HIV positive; in 2000, there were 4,000; in 2006, 30,441; in 2012, 57,726 and in the year up to November 2016, 85,799 people in the region live with HIV.

These are, of course, just the officially registered cases. Khalidova believes the real number is 50-100% higher. And there is another problem: 20m Russian citizens are tested for HIV each year, but that’s only 14% of the population. Meanwhile, officials at the Ministry of Health think that too much government money goes on routine medical check-ups: “We spend money on check-ups for people who don’t need them. Thirty percent of check-ups ought to be given to targeted population groups, to those for whom the funding was earmarked,” Anna Popova, Russia’s chief medical officer, said in an interview with Znak (link in Russian).

In Ekaterinburg, 92% of people that need antiretroviral therapy are receiving it, but not one of the HIV-positive people I spoke to complained about a lack of supply. The region receives more than two billion roubles a year (£25m) to buy medicines. However, from 2017 the funding of medical supplies will be centralised at federal level, and specialists are concerned that centralisation may lead to shortages of essential medication.

20 million Russian citizens are tested for HIV each year — that’s only 14% of the population

“We have already had two stages of the centralisation programme,” Anzhelina Podymova, medical director of the Sverdlovsk AIDS centre tells me. “Both times we received our supplies in late June-early July. But by April they’ll have run out, and there’s a risk that 40,000 patients will be left without their medication.”

Activists say that in some regions the supply situation is so bad that only 25% of those who need medication will receive it. In Moscow, the situation is complicated by the fact that the antiretroviral therapy is usually available only in your official place of residence, so many people from the regions who permanently live and work in Moscow can’t get the medication they need.

Hopes and prayers. At the Novoye Vremya offices in Ekaterinburg.Officially, over a million Russian citizens are HIV-positive. In 2014-2015, Russia spent roughly 20 billion roubles (£250m) a year on antiretroviral therapy. According to figures from the Ministry of Health, this bought enough supplies for 180,000-220,000 people, whilst official statistics put the number of HIV-positive Russians at over a million. In 2016, funding is set to rise by another 3.2 billion roubles (£40m) a year, which should cover therapy for 390,000 patients.

More people could also be treated if the cost of antiretroviral drugs, which is tied to the value of the rouble, were reduced. Sergey Chemezov, head of the state-owned Rostec corporation (and an old friend of Vladimir Putin), has promised to cut the cost by half in the near future: Rostec subsdiary Nacimbio has signed an agreement with the Indian company Cipla to build a new plant which will produce HIV medication as well as drugs to treat TB and viral hepatitis.

The first products to be developed by the Russo-Indian joint enterprise should be on the market in 2017, and a successful launch could change the situation radically: a course of antiretroviral therapy currently costs US$1170 (£936), whereas Chemezov has said that the Russo-Indian analogue will cost US$650 (£529).

Condoms and traditional values

Although HIV has for many years affected all ethnicities and social classes, Russian officials still tend to think in terms of “at risk” groups that need to be “sorted out”. It’s well known that half of all cases are the result of heterosexual contact, and in some regions, for example Irkutsk, the statistics indicate that 76.3% of infections are linked to unprotected sex (link in Russian).

Russia has nevertheless no general sexual education programmes, condoms are very expensive and officials place more emphasis on “marital fidelity” than promoting safe sex.

Vitaly Onishchenko, Anna Popova’s predecessor as Russia’s chief medical officer, claimed in August 2015 (link in Russian), for instance, that “condoms are of no relevance to health: this [cut in imports of contraceptives] will simply force people to be more disciplined, more rigorous and more selective in their choice of sexual partners, and may even have a positive effect in helping to solve our demographic problems.”

An AIDS centre in Ekaterinburg.Roizman is also sceptical about sexual politics: “You could be handing out condoms, and people would go to the dentist’s [and get infected there]. Or they might have a blood transfusion. Of course, incomes have generally fallen, so maybe it makes sense to provide condoms. But we definitely talk about this stuff in our schools and colleges. And I would like to see more of that.”

I didn’t manage to find anything out about how schools in the Sverdlovsk region enlighten young people about sexual matters, but a member of staff at one of Ekaterinburg’s NGOs told me they had to discontinue their sex education programme after they were ordered to avoid the words “condom” and “contraceptive”. Instead, they have to focus on “traditional values”.

Meet the “HIV dissidents”

The concept of “traditional values” generally leaves no room for discussing HIV, but the so-called “HIV dissidents” deny its very existence. I spoke to Aleksandr Usolntsev, a well-known HIV dissident and human rights campaigner. His name got in the papers after he defended an HIV-positive woman who had refused to give antiretroviral therapy to her HIV-positive daughter.

Despite the fact that the woman’s first child died for lack of treatment, Usolntsev, like other HIV dissidents, doubts the existence of the virus and believes that antiretroviral therapy is a commercial conspiracy. In the Russian Facebook equivalent VKontakte, you can find dozens of groups committed to denying that HIV exists; they advise people on how to avoid therapy during pregnancy and how to avoid giving it to HIV-positive children.

“I guess everyone goes through the denial stage,” Tanya (not her real name) tells me, “but fortunately we don’t all get stuck there.”

Tanya is a very attractive young woman with blue eyes and long fair hair. She is now 26, and has been living with HIV for 11 years. In 2006, when Tanya was 15, she was raped by a HIV-positive drug user who had recently been released from prison. She knew the man — he worked as a security guard at the company where Tanya had a part-time job.

“I knew that he fancied me, but I didn’t want anything to do with him. He stalked me.” Tanya told her mother what had happened and she went to the police, but they were persuaded to hush it up on the grounds that “she’s just a young girl, you wouldn’t want to drag her name through the courts and shatter her nerves”.

“Less than a year later, our family doctor asked me if I was on drugs, as my liver was so distended, it looked like I had hepatitis. I had tests and discovered that the man had infected me with HIV and Hepatitis C. I was 16.” Tanya is fine now: she has a successful business, and she and her husband have recently had a healthy baby.

“I guess everyone goes through the denial stage,” Tanya tells me, “but fortunately we don’t all get stuck there”

But 11 years ago not all doctors realised what HIV was: even an infectious disease specialist couldn’t believe that it might be transmitted by sexual contact and sent Tanya regularly to a drugs counsellor. Tanya told me a lot about the discrimination she encountered: she was labelled a druggie, and had to keep erasing the discriminatory “B20” mark (the code for HIV-positive status) off her test results and hospital records.

All my respondents spoke about how discrimination on the grounds of their HIV status was an enormous problem and led to many people keeping quiet about it out of fear, thus putting others at risk. “There are more than a million HIV-positive people in Russia today,” Tanya reminds me. “The illness is no longer confined to prostitutes and drug users; it affects all social strata. But the rejection that goes with it hasn’t gone away. And that’s why the illness is still here as well.”

At the end of my conversation with Evgeny Roizman I ask: what should people in Ekaterinburg do? “Get used to it,” he replies, “we’ll be living with it for a long time.”

All photos courtesy of the author, except the mobile medical centre in Ekaterinburg (Pavel Lisitsyn / RIA Novosti).

Translated by Liz Barnes.


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