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.
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.
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?”