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Left out in the cold: Living with HIV in Russia

‘Talk to Al Jazeera’ traveled Russia to find out what’s behind the fast-growing HIV epidemic there.

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Russia, the largest country on earth, which emerged from the post-Soviet economic and political chaos to reassert itself, is facing a HIV epidemic.

The current rate of HIV is less than one percent of Russia’s population of 143 million. It’s far lower than many other countries, such as South Africa which stands at 12.2 percent, that have been battling HIV epidemics.

Russia has one of the fastest-growing rates of HIV/Aids in the world. At the beginning of this year, the number of registered HIV-positive people surpassed one million. The number of Russians living with HIV has almost doubled in the last five years.

The 2016 UNAIDS Prevention Gap Report pointed to Eastern Europe and Central Asia as “the only region in the world where the HIV epidemic continued to rise rapidly”.

Russian activists say the government’s reluctance to introduce internationally-accepted prevention methods is behind this epidemic. Potential solutions such as sex education, the distribution of condoms to sex workers, methadone therapy and the availability of clean needles to drug addicts are strongly opposed by religious leaders and other conservatives.

It is estimated that over 50 percent of HIV cases in Russia are the result of intravenous drug use. Methadone therapy, however, was made illegal by President Vladimir Putin’s government, despite being classified as “the most promising method of reducing drug dependency” by the World Health Organization.

Talk to Al Jazeera travels to St Petersburg and Moscow to meet people living with HIV and the activists doing all they can to help.

In St Petersburg, we meet Aleksandr Romanov, 47, who discovered that he was HIV-positive six years ago. He grew up in Kazakhstan, then part of the Soviet Union. He says his infection can be traced back to the post-Soviet effects on society – dramatic changes, which included widespread drug use.

Maria Yakovleva, also known as Masha, is part of Svecha, or Candle Foundation, an organisation which provides support, guidance, education, and hope to those living with HIV. She herself is HIV-positive. Changes need to come from the top, she says. 

“There are plenty of things [people need to know], but there is no information [from the government],” Yakovleva says.

Maksim Malyshev works as a social worker with a local NGO in Moscow, which promotes humane drug policies. He worries about the negative impact that the government’s approach has on Russians living with HIV. He can’t understand whether Russia’s leadership simply doesn’t care or is just incompetent.

“In my view, the problem of HIV infection in Russia exists because the people whose job it is to find ways of preventing HIV in Russia are doing a crap job. They are living in some kind of fantasy world of their own, and they have no desire to listen about science-based methods and to the specialists who are working on this problem,” he says.

“Either these people are hypocrites who don’t care about the thousands of people who get infected with HIV and die, or they are simply too stupid to research the HIV prevention information in order to ascertain what is and isn’t working and to resolve this problem.”

The government needs to wake up to a problem that has long been urgent, he believes.

“I think we are already long past the point when something should have been done.”

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Is the Kremlin fuelling Russia’s HIV epidemic?

Svetlana Izambayeva, 36, won a beauty pageant in 2005 for HIV-positive women, becoming one of the first Russians to bring the country's HIV/Aids epidemic to the public eye

Svetlana Izambayeva, 36, won a beauty pageant in 2005 for HIV-positive women, becoming one of the first Russians to bring the country’s HIV/Aids epidemic to the public eye

Svetlana Izambayeva, 36, is one of Russia’s most unusual beauty queens.  The former hairdresser from the Volga River city of Cheboksary was crowned Miss Positive during a 2005 pageant for HIV-positive women.

She was one of the first Russians to publicly disclose their status; tens of millions saw her do so on national television.  Four years later, Izambayeva’s widowed mother died, and she was denied custody of her two little brothers.

Article by Mansuar Mirovale of Al Jazeera 
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Russian law does not allow an HIV-positive person to become a child’s legal guardian. The boys ended up in an orphanage where they were beaten, had their belongings stolen and got lice.

“I went through eight trials to win them back,” Izambayeva, red-haired and bespectacled, told Al Jazeera at a conference on HIV/Aids in Eastern Europe and Central Asia, held in Moscow in late March.

Izambayeva, her brothers, husband and two children, now live in a cramped one-bedroom apartment in Kazan, a city of 1.2 million with a sizeable Muslim population.

There she heads a charity which helps people living with the HIV virus, and moonlights as a part-time psychologist at a state-run clinic for $60 a month.

Izambayeva is also on the frontlines of the fight against Russia’s soaring HIV/Aids epidemic.

Russia: in the top 10

The number of registered HIV-positive Russians surpassed one million in January, almost doubling since 2011, Health Minister Veronika Skvortsova told the conference. She admitted that this number may reach 2.5 million by 2020.

The current rate of HIV is less than 1 percent of the country’s population of 143 million. It seems miniscule in comparison to South Africa’s estimated 12.2 percent, Botswana’s 17.6 percent and even Suriname’s 1.1 percent.

But these nations’ epidemics have been contained and are on their way down, while Russia is among the top 10 countries with the fastest-growing incidence of HIV/Aids.  Here, it claims 300 new victims a day, or almost 30,000 deaths a year.

Russia, along with four African nations and Indonesia, face the ” triple threat of high HIV burden, low treatment coverage and no or little decline in new HIV infections,” according to a 2014 report by UNAIDS, a United Nations programme on HIV and Aids.

UNAIDS  has warned that Russia “is facing a large and growing HIV epidemic.” It’s one which has become ” irreversible in many ways,” Russia’s Federal Aids Centre has said.

On July 11, UNAIDS, in its 2016 Prevention Gap Report on how unequal access to HIV prevention options caused a rise in infections between 2010 – 2015, singled out Eastern Europe and Central Asia as “the only region in the world where the HIV epidemic continued to rise rapidly.”

Elsewhere, the decline in adult infections has largely stalled. In this new global report, the agency said that the region saw a dramatic 57 percent annual increase in new HIV infections since 2010. Russia accounted for 80 percent of new cases in 2015 in what consitutes as “the region’s largest HIV epidemic”.

“Low coverage of prevention programmes, in particular harm-reduction interventions among people who inject drugs, is largely to blame for this continued rise,” the report said.

At the March conference, Russian Prime Minister Dmitri Medvedev told audiences that the epidemic is ” a matter of national security and a real tragedy for our country.”

The Kremlin’s fault?

Independent Russian experts and HIV activists claim that the epidemic is fuelled by the Kremlin’s policies, or, rather, its abandonment of internationally accepted prevention methods such as sex education in schools, distribution of condoms to sex workers, and clean needles and methadone therapy for drug addicts, let alone awareness-raising campaigns such as the pageant Izambayeva won more than a decade ago.

The trend accelerated after Vladimir Putin’s return to a third presidency in 2012, which was marked by massive protests, mostly by middle-class, pro-Western urbanites.

The Kremlin responded by cracking down on opposition and all things Western, be that political trends, tolerance towards sexual minorities or programmes on HIV/Aids reduction run by foreign-funded NGOs.

Putin’s government is “directly sabotaging HIV prevention by not allocating its own funds and blocking the work of international donors and Russian NGOs,” said Anna Sarang, head of the Andrey Rylkov Foundation, the only NGO distributing clean needles to drug addicts in Moscow.

In 2012, Russia adopted a law that requires foreign-funded NGOs to register as “foreign agents”, and the Justice Ministry has listed some 100 groups as such. These groups are frequently audited, denied registration with authorities, their offices searched, their staff detained, arrested and interrogated. Many have been forced to close. In late June, the Andrey Rylkov Foundation was listed as a “foreign agent”.

The Silver Rose, an NGO in St Petersburg, Russia’s second-largest city, which protects the rights of sex workers and uses Western funds for advocacy work among them, has been denied registration three times.

“We really remain the last barrier to the epidemic,” the group’s head, Irina Maslova, told Al Jazeera. “But sex education goes against the Orthodox [Christian] morals.”

Persecuted and decimated in Soviet times, the Russian Orthodox Church now claims two-thirds of Russia’s population as its flock. Though polls show a fraction to be devout, the Church enjoys unprecedented government support and its doctrine plays a crucial role in the Kremlin’s neoconservative agenda.

In mid-April, a court in the city of Engels declared Socium – an NGO which used grants from Western donors to distribute condoms and clean needles to drug addicts and HIV-infected people – a “foreign agent”.

Moreover, Ivan Konovalov, a sociology expert, told the court that the NGO “participated in a hybrid war that aims to change the political regime in our country,” the Russian daily newspaper the Kommersant reported.

“Its operations in principle contradict the goals and objectives of our state,” the daily quoted him as saying. “They destroy our traditions and national values.”

“Traditions and values” was the mantra the Kremlin used in 2013, when Putin signed the infamous legislation banning the distribution of information defined as “propaganda of sodomy, lesbianism, bisexuality and transgenderism” to minors.

“Russia’s policies are aimed at discriminating [against] all vulnerable groups – drug users, LGBT, sex workers – and directly oppose scientifically proven methods of prevention that are used worldwide,” Sarang says, adding that these methods “are replaced with the policies of spreading hate and homophobia”.

Already widespread, homophobia grew rampant, hate attacks and persecution of LGBT Russians skyrocketed, and education materials on HIV/Aids describing same-sex relations and distributed by international agencies and Russian NGOs are often treated as the banned “propaganda”.

“The fight against HIV is the very litmus test that measures the level of humanity and tolerance, and that’s where we fail the most,” political analyst Sergey Medvedev said at the Moscow conference.

Despite several requests, Russia’s health ministry was not available for comment.

Roots of the scourge

The start of the epidemic dates back to the initial years after the 1991 Soviet collapse.  For the Soviets, sex out of wedlock was frowned upon, abortion was the most common method of family planning and homosexuality was a crime punishable by up to five years in jail.

Those diagnosed with a venereal disease could face criminal charges if they refused to identify their sexual partners. Families and reputations were ruined, but the transmission chain was cut short.

The fall of communism brought an unprecedented openness – of borders, ways of life and sexual mores – along with painful, disorienting economic problems. Partying went along with promiscuity; nightclubs, including for gay patrons, mushroomed.

“The attitude to sex became, just like in the West during the student revolutions of the 1970s, one of the main symbols of the new, liberal, pro-Western, anti-Soviet, individualistic and hedonistic mentality that had been repressed and persecuted by the Communist Party,” wrote Igor Kon, the late Russian scholar whose books on human sexuality became eye-opening bestsellers in the early 1990s.

Prostitution became ubiquitous. Sex workers lined up along Tverskaya Street in Moscow, a short walk uphill from the Kremlin. Newspapers were filled with countless ads promising all kinds of “massage”.

Then came the drugs.

Intravenous drug use was virtually unknown, limited to only a small group of users with access, in the Soviet Union but by the early 2000s, Russia became the world’s largest consumer of Afghan heroin, injecting, sniffing or toking up to 20 tonnes of it a year.

Moscow accused Washington of forbidding NATO troops to destroy Afghan poppy fields to win the hearts and minds of local farmers, and allowing the smuggling of heroin to ex-Soviet Central Asia.

Some 1.5 million Russians are still addicted to heroin, according to FSKN, the federal anti-drugs agency that was headed by Viktor Ivanov, Putin’s ex-KGB colleague, before being disbanded in April.

FSKN preferred heavy-handed policies of dealing with addiction. Methadone was outlawed in 1997, and FSKN pushed for tougher punishment for drug users and wants to be able to forcibly commit them to state-run rehab clinics.

The idea that drug addicts, gays and prostitutes are the primary, if not the only victims of HIV/Aids, persists in the minds of many Russians today.

According to a 2012 survey by FOM, a state-run pollster, 48 percent of Russians think that drug users mostly contract HIV, and 26 percent believe that “promiscuous people, prostitutes” are most at risk.

Thirty-nine percent of those surveyed think those infected had it coming, and their status is “their fault”.

In recent years, things have changed. The amount of heroin entering Russia decreased and the epidemic spread beyond the risk groups, says Vadim Pokrovsky, head of the Federal Aids Center.

About 43 percent of new HIV infections occur during heterosexual sex, he says.

Overcoming the stigma

That’s how Izambayeva got infected – during a fling with a young man she met on a holiday in southern Russia – something people here call a “resort romance”.

She recalls her own deep depression after she learned about her status in 2003. All she knew about the virus at the time was that it would kill her soon, and she kept repeating a line in her head from a popular Russian rock song: “And now you have Aids / which means we’re gonna die.”

It was only after meeting HIV activists and learning more about anti-retroviral treatment that she felt ready to fight the virus. Then she won the pageant, met and married her HIV-positive husband and founded her charity. She has consulted hundreds of HIV-infected people and their families, helping them to tackle the stigma and getting them on to treatment, and often educating them about the most basic facts about HIV/Aids.

She discovered that combating the stigma surrounding HIV is far more difficult than observing the treatment.

“HIV will keep progressing in Russia until we overcome the stigma,” she says.

The lives of many HIV-positive Russians are filled with fear of disclosure and daily abuses.

Some refuse to start their anti-retroviral treatment because they know very little about its results and end up choosing shorter, closeted lives over monthly visits to health clinics where they fear their status will be divulged to outsiders.

This happens all too often.

“Medical secrecy does not exist,” Ruslan, an HIV-positive resident of Kazan, who only gave his first name, told Al Jazeera. He said his doctor revealed his status to people outside the clinic who knew Ruslan and they spread the news.

What also prevents many HIV-positive people from starting treatment is the lack of information about the most basic facts about the virus, especially when it comes to teenagers and people in their early 20s who appear to know very little about prevention, Izambayeva says.

“People say, ‘Your treatment will kill me faster than Aids,'” she says about some of her patients whose knowledge about the virus is mostly based on hearsay.

Because of compulsory screening, pregnant women represent the most tragic stratum of the epidemic.

They comprise almost a quarter of newly diagnosed cases and sometimes reject treatment, passing along the infection to their child.

“Some pregnant women tell me, ‘You can’t do anything to me, this is my foetus, I’ll do anything I want with it,'” says Izambayeva, who adhered to a drug regimen during her pregnancy and gave birth to two HIV-negative children.

Dostoevsky and immorality

While HIV activists blame the growing epidemic on the Kremlin’s neoconservative bent, officials and the dominant Orthodox Church back it.

The Church has adamantly opposed needle-exchange programmes, methadone therapy and the use of condoms because they “condone sin” and has instructed its clergy to bring their HIV-infected parishioners closer to Christ and seek medical help.

“Of course, we are very glad that the so-called harm-reduction programmes and free distribution of condoms, replacement of [heroin] with methadone are not accepted in our country,” Bishop Panteleimon said in October, addressing a government panel on HIV/Aids.

“We understand that there is a need for other methods and other programmes,” he added, referring to the Church’s emphasis on chastity and tougher drug-control measures.

“Like no other disease, Aids has moral, or, to be more exact, immoral reasons,” said the bishop, who runs an Orthodox rehabilitation centre for heroin addicts in his parish of Orekhovo-Zuevo, a region near Moscow.

To hear it from Russia’s child rights ombudsman, one of the most outspoken critics of the West, would be to think Dostoevsky and Tolstoy offer better prevention strategies than the UN.

“Today, the best sexual education is Russian literature,” Pavel Astakhov said in televised remarks in 2013, referring to the Orthodox morals that the classics draw upon, evidently forgetting the prostitution and adultery vividly described in them.

Western sexual education, he added, “destroys children’s mentality and causes irreparable danger”.  Such thinking has resulted in the omission of sex education and information about contraception on state-backed public service announcements.

“When condoms are considered a crime, things get complicated,” Natalya Vershinina, an HIV activist from the Volga River city of Samara, told Al Jazeera.

She says that many Russian couples haven’t fully embraced the necessity of getting tested for HIV before starting a relationship. She points to the slapstick television series How I Became a Russian, which aired in 2015 on the national STS channel, as an example.

In the series, an American journalist falls in love with Russia, and a Russian girl. In one episode, he shows her a fake certificate proving that he is HIV-negative. She immediately recognises forgery, but says, “I trust you” and, apparently, has unprotected sex with him. The episode reflects an opportunist attitude many young Russians have when it comes to sex.

A 2012 poll by the NewsEffector monitoring agency showed that more than 63 percent of Russians aged 16-35 don’t use protection when they have casual sex.

Russia’s struggling economy is also affecting the HIV/Aids epidemic.

The Health Ministry said that fewer than 200,000 HIV-infected Russians are getting free anti-retroviral therapy in 2016 because of Russia’s deepening economic meltdown. Compared to last year, 50,000 fewer people are now receiving treatment; in 2015, the Ministry had also pledged to expand treatment to 60 percent of the estimated one million Russians infected with the virus.

Tens of thousands of patients are being transferred from expensive, foreign-made drugs to cheaper, domestically produced pills, which cause more side-effects, including vomiting.

Now, each month when she visits the health clinic, Izambayeva worries she’ll be given the Russian-made drugs.

“But I pity the infected children the most,” she says. “How could they follow up on their treatment if they keep throwing up?”

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Russian TV presenter hopes revealing his HIV status will promote tolerance

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Russia is struggling with an HIV epidemic, but you could be excused for thinking that the problem did not exist at all. Sex education and HIV and Aids prevention are not topics for schools, and public service advertising and media coverage is rare. Even many healthcare professionals prefer to avoid the topic.

But while Charlie Sheen-style HIV revelations by celebrities are also unheard of in the country, this week a television presenter, Pavel Lobkov, declared that he was HIV-positive during a live broadcast on TV.

Story via
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Lobkov and activists said they hoped that his statement, broadcast by the small independent channel TV Rain, would jump-start public discussion about the issue, as the number of new HIV cases sky-rocketed.

“It’s not the done thing to talk for real [about HIV], and in Russia it’s a real problem,” Lobkov said. “Maybe after this shock there will be a discussion about what these medicines are, and are there enough doctors specialising in this, is their knowledge adequate to treat HIV infections?”

Lobkov said during the broadcast that he had discovered he had HIV in 2003 while working for the NTV channel. Immediately after he was diagnosed his doctor refused to treat him, telling him he was being excluded from the NTV insurance programme.

Since then Lobkov had had trouble finding treatment for mundane conditions. He said it took him about a year to find a dentist willing to perform an implant procedure after several told him his HIV status would cause complications, despite research showing such concerns to be baseless.

According to Lena Groznova, an activist at the HIV-prevention group Andrey Rylkov Foundation, such ignorance about HIV is common even among healthcare workers, due to the lack of public service information. She said public perception of HIV was outdated and associated the condition with a “quick death”. Widespread disapproval of gay relationships and drug use also played a role.

“Few people from the general population know that a therapy exists that allows people to support their [HIV] status. Even among specialists we run into, police, doctors, have a stigma and fear of HIV people that doesn’t match the threat, which is none,” Groznova said.

Lobkov said several doctors had contacted him in recent days to tell him about HIV-positive patients who did not seek treatment or register for state-provided medicine for fear that their infected status would have a bad impact on their professional and personal lives.

Russia is one of the few countries where the number of HIV cases is rapidly growing. According to the federal Aids centre, at least 986,657 Russians were officially registered as HIV-positive as of 1 November, and the number of new cases had risen by 12% this year.

A consumer oversight agency official in St Petersburg said last month that Russia faced an HIV epidemic. But while the government has increased spending to treat Aids, state policy on fighting HIV has focused on abstinence from sex and drugs, rather than harm reduction programmes.

A message from the Ryazan city government for World Aids Day on Tuesday declared that “even one single sexual contact, even one dose of drugs, can cause HIV infection”.

The state-run Russian Strategic Research Institute said in a report, in October, that rather than adopting western methods, Russia needed to develop an HIV and Aids prevention programme to “reflect real national interests”.

Opioid substitution treatment with substances such as methadone, which aims to help users gradually lose their addiction and is frequently used in the west, is illegal. The Andrey Rylkov Foundation is one of the few groups that hands out clean needles and condoms to at-risk groups such as drug users.

Although the Moscow city Aids prevention centre recently began an advertising campaign around the slogan “Friendship doesn’t transmit HIV”, it was not enough, Groznova said.

Lobkov said: “The government can fight social phobias, it should have information campaigns on tolerance, acceptance. If there will be tolerance, people will go do [HIV] tests, then they will go [to] therapy, and the epidemic will start to die.”

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Should the “New” Russian HIV Strain Cause Concern?

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There has been a lot of play in the press recently about a “new and more virulent strain of HIV” (Daily Mail, Oct. 17) that appears to be spreading quickly in parts of Russia and Central Asia.

According to the epidemiological reports, this new recombinant form of HIV-1 — called 02_AG/A — is spreading at a faster rate than the dominant subtype, HIV-1 A. Moreover, the prevalence rate in some parts of Siberia have spiked by as much as 700% in the past five years, with nearly one out of every 180 persons infected.

Of these, 50% can be attributed to 02_AG/A.

What’s causing the most concern among global health officials is the fact that Eastern Europe and Central Asia are the two areas in the world where HIV infections are actively increasing.

The question is whether this “new” HIV strain is the cause of the increase. Is it as virulent as some are claiming, or are there other factors playing a key role (e.g., social, behavioral)?

Looking at the epidemic up-close, injection drug users and their sexual partners still remain the major drivers for the epidemic in the majority of Russian regions. A steady drug trade from Central Asia through the western borders of Russia — combined with increases in migratory labor and international travel — have likely contributed to the genetic diversity in the regional HIV pool.  Over time, this gave rise a recombinant form of HIV that appears to be more “fit” than other forms of HIV, allowing it to predominate.

But does this, in and of itself, mean that 02_AG/A is a “meaner, scarier” version of HIV, able to infect more easily than other HIV strains?

In truth, the fact that it has spread so quickly, taking a leading position in some regions, does warrant concern. One study conducted by the New York University School of Medicine suggests that 02_AG/A is able to replicate nearly 1.5 times faster than parental subtype A. Simply put, the replication rate may allow the virus to “build traction” more quickly in an effected host, far in advance of an immune response.

But what all of this doesn’t suggest is that 02-AG/A is any more or less deadly than other forms of HIV. In fact, a four-year study by the University of Montepelier in France showed that the 02_AG strain (which predominates in Cameroon and West-Central Africa) does not differ from other forms of HIV in the region, either in terms of survival, disease progression, or CD4 cell decline.

However, none of this can downplay the fact that, unless Russian health authorities act now, the spread of 02_AG/A may thwart any effort to stave the alarming HIV infection rates in the region… or the spread the virus to other regions and continents.

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