Through the morgue! Use the entrance by the morgue! Vera Ivanovna Kovalenko shouts into her phone while waving her free hand and nearly dropping her cigarette. She anxiously looks around the dumpsters she’s hiding behind to see if anyone from inside Yekaterinburg’s City AIDS Center has noticed the cloud of smoke rising above the rusty metal bins. Smoking is banned on the grounds of the center which serves some of the region’s 82,000 registered HIV positive. The dumpsters, though, provide decent coverage from the center, blocking Vera and the patient she’s calling a cab for. The patient, a frail woman, paces around Vera, jerking her walker across the snow-packed driveway with one hand while also barely holding on to her cigarette in the other. The minus six degree fahrenheit temperatures at least prevent the smell of trash from mixing with the biting Ural mountain air.
This is how we work, Vera says to me in Russian, breaking her irritated expression with a laugh. She recognizes the dark humor in the directions she has just given the taxi driver and follows with another quip, jokingly bringing the driver’s ethnicity and driving ability into question. While the cab tries to find the right entrance, Vera offers a few last words of support to her patient. Don’t let your spirit fall, you hear me? You need to fight until your last breath.
Vera says her goodbyes and walks inside the building, down the steep staircase to the basement. She is close to finishing one of her shifts as a ravniy konsultant, a title for HIV-positive counselors that literally translates to equal consultant. Along with a handful of veteran HIV patients turned activists, Vera has accomplished something remarkable. Unaffiliated with the government-run AIDS center upstairs, which houses their operation, and with no professional medical credentials to speak of, she and her team have negotiated permission to turn the basement space into an informal clinic of their own. The Sverdlovsk region, where Yekaterinburg is the capital, boasts Russia’s highest HIV infection rates, almost two percent of the population is officially infected. As rates continue rising fast, authorities handed the space over to the motley group of former krokodil users, ex-convicts and working parents—almost all HIV-positive. The below-ground activists welcome anyone who needs accompaniment to a doctor’s appointment upstairs, advice, condoms, syringes, bruise ointment or just a cup of instant coffee.
Russia’s one million HIV patients are registered at city and regional AIDS centers like this one. By separating HIV patients from the general hospital system, the government created bastions for newly-diagnosed patients to be sent for antiretroviral therapy (ART), blood tests, and access to a range of medical professionals, free of charge. Patients who live outside cities can register at a regional center or with a specialist at their local clinic. This care structure is sound in theory, but in practice, the centers are underfunded, overcrowded and staffed with a cadre of doctors hardened by years of watching Europe’s worst HIV epidemic grow largely unchecked. The centers reinforce segregation and stigma within the medical system for those with a disease that is no longer limited to high-risk populations like intravenous drug users and sex workers. Increasingly, the most common form of infection in the country is heterosexual sex. Close to one percent of Russians carry the virus, although experts say that for more realistic estimates of the notoriously underreported disease, all official statistics should be multiplied by a minimum of two. However year by year, measures that would address the crisis increasingly fall in opposition to Kremlin policy. Though the government can no longer afford to ignore what has grown to be a full-blown epidemic, slowing down infection rates requires confronting some of the inconvenient realities of life in modern Russia.
LONG LIVE AIDS
It’s now possible to treat HIV with a single daily pill that lowers the presence of the virus in a person’s blood to an undetectable level, making the virus no longer infectious. Western doctors compare the seriousness of a new HIV diagnosis to diabetes. However, in Russia 20 percent of all people who have been diagnosed with HIV have already died from the disease and even more startlingly, less than a quarter of those registered as HIV-positive are prescribed the free ART that the government guarantees.
Katerina Zinger, an HIV activist I met in St. Petersburg, flatly explains what all HIV-positive Russians already know: We operate with the clear understanding that our doctors have no time to work with patients. He doesn’t have the time, he doesn’t have the resources.
Although the number of infected people in Russia’s second-largest city is comparable to that in Yekaterinburg, St. Petersburg’s City AIDS Center lacks an in-house counseling operation similar to Vera’s. This leaves Katerina, the main coordinator of the city’s largest HIV organization Human Action, running counseling sessions out of a rented hall and depending on word of mouth to spread information about the organization’s extensive work. Services that improve a person’s quality of life, those are NGOs, she tells me. This is important and doctors realize it. It’s the government that doesn’t realize it.
Katerina sometimes clocks in 16 hours a day. Besides managing Human Action, she works an HIV telephone hotline and organizes an under-the-table pill exchange, sending out medication to cities when there are drug shortages—sometimes even to Moscow. She arrives late to our meeting and explains that she just ran into a patient of hers on the street. She calls him Lyosha the poteryashka, the lost one. He’s an old friend with whom Katerina used to shoot heroin with years ago, before she was diagnosed with HIV, quit drugs and began work as an HIV activist. Of her former circle of heroin users, she and Lyosha the poteryashka are the only two left who haven’t died from AIDS. Despite her efforts, Katerina says she can’t convince Lyosha to make an appointment at the AIDS center. He refuses any treatment. I can’t use force to get him to go. I can’t drag him in by the scruff of his neck. His priority is not treating his HIV infection . . . Every morning his day begins not with, ‘I need to go and get my blood tested,’ but with the need to find some money to buy drugs.
He’s not the only lost one Katerina works with. I have another guy, he’s gay. He has a negative partner. And he just got it into his head that he doesn’t have HIV. Completely. He doesn’t deny it. He just doesn’t even think about it.
I have another guy, he’s gay. He has a negative partner. And he just got it into his head that he doesn’t have HIV. Completely. He doesn’t deny it. He just doesn’t even think about it.
Passivity and denial in the face of diagnosis contribute to the unusually high number of registered HIV-positive Russians not on ART. Katerina estimates that about 70 percent of those not on ART have a white blood cell count that is high enough to hold off a doctor from prescribing antiretrovirals. Russia’s threshold for beginning therapy trails behind World Health Organization standards which stipulate that ART should begin immediately at diagnosis. Research behind the WHO guidelines shows that initiating drug therapy right away not only prolongs a patient’s life but also acts as a crucial step in a patient psychologically accepting diagnosis.
However, in Russia, HIV-positive people routinely wait years as their bodies fight the infection on its own, exhausting the immune system until white blood cell counts drop to 350. A healthy person’s level is closer to 1,000. Patients can demand ART at any count but in a traditionally paternalistic medical system, patient-doctor dialogue is lacking and few patients do their own research or realize that they are legally entitled to ART. Katerina’s explanation for Russia’s outdated standards is simple: If we set a higher cell count, then the number of people who are treated must increase and that means funding must increase. Everything rests on money. It’s politics.
Everything rests on money. It’s politics.
Historically, Russia’s federal expenditures for HIV care and prevention are limited. Though the 2016 budget for HIV doubled from the previous year to 40 billion rubles, or about $600 million, the funding is still less than half of the 100-billion-ruble figure, around $1.5 billion, that experts estimate is necessary to slow the infection’s spread. Russia’s economy is in deep recession, with the ruble plunging to an 18-year low against the dollar this January, meaning that the country’s 2016 HIV budget is identical to its 2012 allocations in dollar terms. But by any exchange rate, Russian spending is a pittance compared to the $25.3 billion the United States earmarked for 2016 HIV spending. Furthermore, the latest Russian budget still docks financing for some cities like St. Petersburg even as the number of newly infected people climbs. The city scrambled to pay the difference with money from its municipal coffers so that, at minimum, patients already taking ART could continue.
If 70 percent of those not on therapy are simply intentionally not prescribed ART, Katerina estimates that the remaining 30 percent are poteryashki like Lyosha, a more nuanced problem that further complicates fighting the epidemic. Their denial ties in with a wider political legacy of refusing to acknowledge that the epidemic exists.
Russia’s first officially documented cases of HIV emerged during the perestroika, a period of epoch-changing reform and disintegration that preceded the fall of the Soviet Union. The timing could not have been more inopportune. Although glasnost, or openness, introduced political freedoms new to the USSR, doctors were pressured by authorities to misdiagnose HIV symptoms and causes of death. The disease was incompatible with core Soviet values because it affected ostracized social groups such as drug users, gays and sex workers who officially did not—and could not—exist in the USSR.
Even today, Russia’s Health Ministry lacks a single expert appointed to address HIV. Instead, there is Vadim Pokrovsky, a man whose name is synonymous with the fight against Russian AIDS. Pokrovsky is head of the Federal AIDS Center, an organ that operates under the Health Ministry’s oversight but without any legislative authority beyond issuing recommendations to the Ministry, which often go ignored. At the beginning of Pokrovsky’s career in 1987, 16 young medical institute graduates addressed an open letter in the Komsomolskaya Pravda to his AIDS Research Group in which they swore never to treat an AIDS patient. We are convinced that within a short time AIDS will destroy all drug addicts and prostitutes, they wrote proclaiming the disease a blessing and signed off with: Long live AIDS!
FREDDIE MERCURY AND AFRICA
The collapse of the USSR in 1991 gave former Soviet citizens a new country with open borders for the first time in memory. Foreigners flooded in; so did drugs. The economy shrunk by 50 percent over the next decade; inflation soared; income plummeted. Like so many Russians who now have HIV, Vera Kovalenko came of age during these tumultuous years.
Vera was 13 years old when the hammer and sickle flag was lowered from the Kremlin for the last time. Until about a year before, her childhood had been structured and peaceful. She earned top grades and traveled to regional math competitions. But her home life fell apart in parallel with the country after her father returned home from prison. Within a year, Vera was living partly on the street to avoid her father’s constant physical abuse. He drank and sent Vera to the hospital several times with concussions.
In 1993, at age 15, she was serving her first prison sentence for theft. Everything started really young for me. Once it started I couldn’t really stop myself, she tells me while taking a break from her ravniy duties. Her first term was followed by another in 1999 for murdering a woman during a drunken fight. It landed her in a high-security prison for a decade. On admittance, she received a sentence of a different kind and this time it was for life: a mandatory HIV test came back positive.
The way I imagined AIDS was that your ears fall off, your nose, everything.
Sixteen years ago when she was first diagnosed, Freddie Mercury and Africa were Vera’s only conceptions of AIDS. The way I imagined AIDS was that your ears fall off, your nose, everything. She denied her positive status and refused medication during her entire prison sentence, despite being held in a special zone with other infected female prisoners. It’s possible for the virus to stay latent for years without producing obvious symptoms like swollen lymph nodes or flu-like sickness, but Vera was convinced she had been deceived by the prison’s doctors. She says that the first place she went after her release was a clinic to re-test her blood. Only then did she come to accept her status.
At the same time that Vera entered the penal colony in 2000, Vladimir Putin began his first presidential term. Russia’s number of registered HIV patients was 31,000. Five years later, the number had ballooned to 315,000. By the time Vera was released from prison in 2009, there were over 530,000 registered but the government largely remained tight-lipped. Putin’s singular public mentions of HIV were limited to its negative impact on Russia’s demographics. During those years, AIDS activist groups celebrated World AIDS Day by holding mock funerals outside government offices. Carrying painted coffins, often decorated with the red AIDS ribbon, they would march to funeral music and chant: our death is your disgrace.
Despite the Kremlin’s relative silence on HIV, Pokrovsky stated in interviews that during this period Russia’s response to the crisis was at least slowly maturing, helped by domestic NGOs and international organizations. That all stopped by 2012. After Putin sought and won re-election for a third term in what was widely denounced as a rigged parliamentary and presidential election cycle, protest movements erupted at the end of 2011 and were brutally squashed. Street protesters were beaten and jailed by the hundreds; some are still in prison today.
A series of new laws passed that restricted civil society: opposition parties faced higher, and largely unattainable, thresholds to participate in elections; remaining independent media outlets were pressured into silence; and restrictions on organizations operating in Russia escalated, forcing them to declare themselves as foreign agents if they received foreign funding.
When will you have sex education? Ashatov’s response was, I say: never.
As illusions about Putin’s intentions to build a liberal democracy vanished, the Kremlin began loudly churning out nationalistic, “traditional” family rhetoric as a form of novocaine for the public’s disenchantment. Sex education in schools became taboo. Pavel Astakhov, Russia’s top children’s rights official who reports directly to Putin, publicly complained that his Western peers often pestered him with questions like, When will you have sex education? Ashatov’s response was, I say: never. Instead, he recommends children read more Russian novels—everything they need to know about sex, apparently, can be found in the pages of Gogol and Tolstoy.
The Soviet legacy has resurrected in modern Russia, although in a mutated form where repression is mixed with a socially conservative, Orthodox agenda that leaves little room for frank discussion about a growing HIV crisis spread by unprotected, premarital sex and hard drug use.
The Soviet legacy has resurrected in modern Russia, although in a mutated form where repression is mixed with a socially conservative, Orthodox agenda that leaves little room for frank discussion about a growing HIV crisis spread by unprotected, premarital sex and hard drug use.
But in 2015, as the official tally of infected Russians stood poised to break one million, recognition that the country faces an HIV epidemic and widespread shortages of ART finally came from the highest levels of the Kremlin. In a historic press conference in October 2015, Prime Minister Dmitry Medvedev and Health Minister Valentina Skvortsova, together with Orthodox Church representatives, spoke openly about the problem and acknowledged what Medvedev referred to as shortcomings on all levels. While the federal HIV budget is still half of what Pokrovsky calls for, it is notable that it increased at all: virtually all other federal sectors suffered deep cuts in 2016. As the virus becomes common in the general population—not just among stigmatized minorities—the Russian government is showing signs of slowly sobering up to the realities of an infection that increasingly affects its childbearing, tax-paying, war-fighting youth. The Kremlin released its first official strategy for fighting HIV this past February.
THERE IS NO (SAFE) SEX IN THE RUSSIAN FEDERATION
USAID, PSI, UNDP, UNFPA. Dr. Elena Evgenivna Ridalevskaya can recite an alphabet of international organizations that no longer fund her projects at Diakonia, the Orthodox aid organization she directs. Her office can only be reached through St. Petersburg’s most famous cemetery where Lomonosov, Glinka, Tchaikovsky and other Russian cultural superstars lie buried. She works in a tiny room dominated by a large, cluttered desk and a huge carpet icon of Jesus Christ mounted on the wall. Each year we’re left in this anxious state of anticipation. Will we have enough money?, Dr. Elena says to me as I sit across from her, our knees almost touching. We have a certain kind of obligation to the people that we help. She is responsible for raising funds to feed, clothe and provide assistance to the city’s homeless, drug-addicted and HIV-positive communities. Just days before the new year, she still does not know how her organization will stay open in 2016.
Dr. Elena is no stranger to nonprofit shutdowns. In 1996 she opened the country’s first Orthodox Christian rehabilitation center in the countryside outside St. Petersburg. Foreign funding flowed in, allowing her, for a time, to set up and run a pastoral 12-step program, replete with farmland, cows, rabbits, pigs and goats. But by 2006, the government had grown bolder in tightening control on civil society and signs that the political winds were changing came with Russia’s first foreign agent law, an earlier version of the more stringent 2012 restrictions. Reductions in funding forced Dr. Elena to close the center by 2008, selling off all its animals and farm equipment. When we visit the former center together on a snowy January morning, Dr. Elena shows off wooden barns padlocked shut and proudly recalls some of the one thousand program graduates. Outside the main building that the patients built by hand, stationary work-out bikes from the old gym stand rusting under deep snow.
On one hand, Dr. Elena says she understands the government’s fear of revolution and protests. Given the propaganda-saturated, anti-American media environment, it is not much of a stretch for someone to believe that foreign humanitarian organizations operate under U.S. State Department guidance. However, she admits, Russian support of NGOs hasn’t made up for the shortfall in international funding. The consequence of these politics mean organizations working with the HIV-infected or other social initiatives cannot function effectively.
Recent recipients of presidential grants include a patriotic biker gang called the Night Wolves who were rewarded with $1 million over two years for their activity, like periodically attempting to illegally cross European borders while waving Russian flags. Meanwhile, organizations like Diakonia struggle to win the coveted grants, even while loyally operating within Kremlin guidance and Orthodox doctrine, which reject HIV risk-reduction measures like needle exchanges. Large cardboard boxes of clean, disposable syringes line the narrow corridors leading to Dr. Elena’s office. They were donated by accident, she says. She plans to pass them on to a local veterinarian.
While the Church’s position against risk reduction, a blanket term that encompasses needle exchanges, condom distribution and drug substitution therapy, is consistent with its unchanging conservatism on most social issues, the government’s adoption of a “family values,” Orthodox policy is new. So is the Church’s willingness to play politics in what increasingly resembles a church-state symbiosis not seen in Russia since the days of czarist rule. Over the past few years, spiritual representatives, almost exclusively Russian Orthodox, regularly appear at government events. For instance, at the press conference at which Medvedev publicly acknowledged Russia’s HIV epidemic, an Orthodox bishop also spoke. Episcope Panteleimon praised Russia’s rejection of risk reduction, stating that healthy moral values like chastity and patriotism should be the primary weapons in the fight against AIDS.
There’s no such thing as safe sex is rule number one for preventing HIV according to billboards posted in Moscow metro stations, part of a new media campaign launched by the City AIDS Center. Rule number two: The most dependable protection against HIV is fidelity to your beloved. Reckless sexual ties are one of the most common ways of transmitting AIDS! Though the WHO, UN, and just about every international humanitarian organization consider condoms the best method for preventing HIV transmission through sex, organizations that receive Kremlin payouts are adopting a different narrative that distorts facts and confuses the public. When used correctly, condoms bar seminal and vaginal fluid carrying the virus from penetrating genital, anal and oral tissue. In 2015, UNAIDS predicted that condoms averted close to 50 million new HIV cases across the world.
Casual sex is a threat to your future motherhood, reads another proverb from the same campaign. The words stretch across a poster of a pregnant woman shielding herself from a shadowy fist interlaced with DNA helixes. In a bizarre World AIDS Day message last December, municipal administrators in Ryazan, a city located 120 miles southeast of Moscow, recommended citizens not to have sex altogether as even a single encounter can lead to AIDS. These new slogans have replaced widespread contraception advertisements after government officials expressed concerns about falling public morality. When still in office, Moscow’s former mayor Yuri Lyzhkov proclaimed that safe-sex campaigns actually spur HIV prevalence.
Authorities have co-opted HIV prevention propaganda in an effort to remedy dismal demographic trends. Russian birth rates have been rising slowly but a sharp plummet during the 1990s has meant that there are not enough Russians of age having children. The widespread advertising of birth control is credited with cutting Russian abortion rates in half but now casual sex, condoms and abortion are simultaneously condemned as immoral. Modern Russian politics is a confusing playing field where free-shifting priorities mean contraception is discouraged in order to boost fertility rates even while the nation’s abortion rates still remain the world’s highest and close to 215,000 Russians have died from AIDS, the majority of them under 40 years old.
WHAT IS GOOD FOR A GERMAN, FOR A RUSSIAN IS DEATH
Condom use is not the only effective HIV risk reduction practice dismissed in Russia. The UN recommends prescribing synthetic forms of heroin, like methadone or buprenorphine, that are taken orally rather than injected as a strategy for lowering HIV transmission in drug-addicted people; a practice called opioid substitution therapy (OST). Germany is one of the flagship examples. OST is covered by national health insurance; only 3,000 new cases of HIV were recorded in 2014; and the rate of transmission among drug users is almost negligible.
However, Russia saw more than 30 times as many new infections that same year. The country’s drug-using population is the world’s largest, with over 20 percent of users officially HIV-infected. Possession of methadone or buprenorphine carries up to a 20-year sentence and parliament deputies publically denounce OST proponents, like Pokrovsky, as foreign agents.
Many Russians are suspicious of this Western-developed treatment model, objecting that it’s little more than the substitution of one drug for another. Dr. Elena explains the argument further by inverting the nationalities in a common saying: What’s good for a German, for a Russian is death.
However, OST seems to not just be good for Germans but also good for Ukrainians. Though the neighboring country shares both cultural similarities and deep institutional corruption with Russia, OST is credited with halving new cases of HIV among injecting drug users in Ukraine between 2008 and 2014 until political conflict wreaked overall havoc in the country. In Crimea, after the unrecognized Russian annexation of 2014, close to 100 out of the 800 drug-addicted people receiving methadone died of overdose or suicide shortly after they were cut off from the treatment regimen.
But beyond OST’s western origins, several HIV activists I met made another argument. As Dr. Elena explained, You can’t just take some model and copy it. You need to understand what environment it’s going to be realized in. In her opinion, OST is also incompatible with the current state of Russia’s healthcare institutions. An absence of case-management practices and accountability means people could potentially use the disorganized, corrupt system to get a free high while continuing to inject heroin. Several of the St. Petersburg HIV ravniys I met said they were thankful they didn’t have access to methadone while they still used drugs. Katerina from Human Action told me that I know for certain that I would not have stopped if I had the opportunity to legally consume. Another activist Artyom Vereschagin, recalled Doctors Without Borders’ efforts to distribute clean syringes to addicts. We used our own syringes, and others, and theirs, he said. HIV still found us.
The first time we give him a syringe. The second time he stays for some tea. And the third time we can sit down and talk. And then the person knows he can come here for help if he wants to change. And it all begins with that one syringe.
But in the absence of effective case management on a government level, other activists like Vera in Yekaterinburg insist that the priority should be building relationships through interaction facilitated by risk reduction practices. Condoms fill almost every drawer and cubby at the nonprofit she founded, New Life, which also happens to be located in a basement. The organization dedicates a large portion of its activism to sex workers. We just stupidly piled them up with condoms, Vera says of her early outreach efforts. Her co-worker Yulia adds that this way we formed trust with them. There’s no other way. The steps that followed, like regularly testing the women for HIV and accompanying them to gynecologists, were only negotiated thanks to these initial offerings. Risk reduction is crucial to Vera’s success at New Life and in the operation at the Yekaterinburg AIDS Center. Vera says that the first time we give him a syringe. The second time he stays for some tea. And the third time we can sit down and talk. And then the person knows he can come here for help if he wants to change. And it all begins with that one syringe.
PUTIN KNOWS AIDS DOES NOT EXIST
Besides governmental propaganda, Russian NGOs and AIDS centers are also fighting another disinformation campaign: HIV Denialism. This one comes directly from members of the public.
Human immunodeficiency virus does not exist in nature. It’s made up.
Human immunodeficiency virus does not exist in nature. It’s made up, begins Vyacheslav Borovskikh in an episode he hosted for a series of his “health” lectures for the TV channel Union. The Yekaterinburg-based network is an outreach of the Russian Orthodox Church and the third-largest channel in the Urals. Scientists, Boroviskikh explains, realised that by using this idea, you could not just control the number of people being born on this planet but you could also also make it a business. Though the episode aired in 2008, his appearances on Union continued until as recently as March 2015.
HIV denialists, also called HIV dissidents, claim the virus is a myth created by the CIA, western pharmaceutical companies, or both. Part of the group are lost ones who, despite being diagnosed with the disease, deny its existence and refuse ART all while suffering its effects. Billboards advertising Borovskikh’s “Orthodox” clinic are unavoidable in downtown Yekaterinburg. The city is the heart of the denialist movement. In addition to the untold deaths of adult denialist poteryashki, at least four infants have died in Yekaterinburg after their parents, often the ones who infected them with the virus, refused to give them ART. One autopsy of an infant boy who, denied ART, did not live to his first birthday, revealed tuberculosis, meningitis, pancreatitis, cerebral edema, cytomegalovirus, stomach erosion and other diseases that fall under the AIDS spectrum. There are also multiple cases of children ending up in intensive care units as a result of similar denial. Only one mother has been successfully tried and jailed for child endangerment after her child died.
Two blocks from where a grandiose statue of Lenin points down on Yekaterinburg’s main square, Borovskikh holds weekly public “health” lectures on Tuesday nights at 7:00. His neatly combed grey hair and clean-cut appearance hardly hint at his deeply conspiratorial beliefs. He’s propped a small foldable Orthodox icon behind him in the otherwise unremarkable lecture hall and speaks quietly to an audience of around 40 people. He never mentions HIV but makes explicitly anti-scientific theses about the fallacies of Darwinism and quantum physics.
Following his lecture, people line up for consultations. Some are clearly regulars: one devotee shyly hands over a box of chocolates, a gift for Borovskikh’s recent birthday. While several others wait to speak with him, I ask him about his Union HIV episode. Medvedev knows AIDS doesn’t exist, he tells me quietly. Putin knows AIDS doesn’t exist. However, he warns, if you explore this topic, there can be problems.
As with much of Russia’s conspiracy theory culture, HIV denialist propaganda is intertwined with the anti American doctrine that is a staple of Russia’s news channels. Borovskikh speaks for some time before telling me about the light he sees at the end of the tunnel: The hope is that our relationship with the West has recently soured and that the world will now start rejecting technology that came from America, along with America. America will fall and God willing, so will everything with AIDS.
In Russia, proponents of the theory are not limited to the periphery. As recently as 2010, Alexander Gordon hosted a televised debate about the existence of HIV on his popular primetime program Gordon Quixote, which aired on Russia’s largest channel, the Kremlin’s Channel 1. The guests on the denialist side included foreign scientists with undeclared credentials, a politician who twice required assistance pronouncing the word “phenomenon,” and an Orthodox priest. Gordon regularly speaks out against HIV, stating in one interview that he believes AIDS is a religion where corrupt doctors serve as priests.
Government studies have recently started incorporating strains of anti-Western, denialist paranoia. Practically from the moment of President V. Putin’s first term, international media launched a campaign to discredit him, declares the Center for Strategic Studies in a 72-page HIV “study” published at the end of 2015. . .one form of this discreditation became the so-called inability of the Russian government to effectively fight HIV.
Founded and funded by Putin’s administration, the Center draws correlations between countries publishing news about HIV and the nationality of pharmaceutical companies selling HIV medication to Russia. Bar graphs that track the number of articles organizations like The Washington Post or specific journalists like the Daily Beast’s Anna Nemtsova published about Russian social issues “expose” the agents in the information war waged against Russia. The “study” accuses the UN and WHO of exaggerating the risk of HIV and using their altruism to impose moral values and political agendas that are incompatible with the Russian state. The overarching message is that Russia must reject western models and march to its own drumbeat.
But statistics overwhelmingly demonstrate that the country’s response to the epidemic has been to march backwards. Over the last five years, the rate of HIV infection and the rate of AIDS-related mortality grew each year. In terms of HIV, the Russian drummer has no sticks.
YOU HAVE AIDS, THAT MEANS WE’RE GOING TO DIE
Russia’s pool of recently infected citizens includes those with higher status on the government’s health care agenda. Seventy nine percent of women registered as HIV positive in 2015 were infected through sex and the majority are between the ages of 25 and 30.
Natalia, an HIV activist in St. Petersburg, still regularly catches sight of the man who infected her with HIV, though never in person. I see him on TV now. Everything’s fine with him, she says smiling shyly. Today a prominent local TV news anchor, the man who gave Natalia HIV was her first serious college boyfriend when they were studying journalism together. Natalia ended the relationship when she found out he was doing drugs. She followed the customary pattern and hid her HIV status even from her mother for the first several years. She knew her mother pitied HIV-positive people, she says thoughtfully, and I didn’t want her to feel sorry for me.
But beyond the initial shock of her diagnosis, Natalia says her life barely changed in the years that followed. She has fond recollections from the first phase of her HIV-positive life, filled with professional success in TV news and time spent riding around Russia on a motorcycle with a subsequent boyfriend who accepted her positivity without question. In my life, it has never restricted me, she says. Married twice and now a single mother to a daughter born HIV-negative, Natalia only remembers being rejected once by a man because of her HIV status. I didn’t make a tragedy out of it. I cried for a week. And that was it, she jokes overdramatically.
Natalia lives in the city center, dresses fashionably and shares her excitement about the new exercise equipment her boyfriend gave her as a New Year’s present. Her biggest health concern isn’t HIV but trying to lose a few kilos in the new year. She is determined to prove that her status neither defines her nor binds her to other people just because they are both positive. On the walk over to the St. Petersburg City AIDS Center for her regular check up, Natalia warns me that the other patients we may encounter may be active drug users and in various states of lucidity. She cautiously rejects the common call to brotherhood and feels that her life experience has little in common with those who knowingly put themselves at risk of transmission. Because he has HIV and so do I, I’m supposed to pity him? Of course not. I won’t feel sorry for him. I don’t want brotherhood with that person just because he has the same diagnosis as I do and we go to one clinic together.
It’s a sentiment likely shared by many people who are part of the second wave of HIV, often contracted through the carelessness or betrayal of a sexual partner rather than through behavior deemed socially immoral like drug use or sex work. Though Natalia eagerly works with her brothers in the HIV outreach projects she manages throughout Russia’s regions, she’s also determined to use her media background to promote stories that represent her own experience. She complains she hasn’t seen a single decent Russian documentary on the topic. Instead, TV specials are heavily dramatized with ominous music, depressing themes and protagonists that women like Natalia can’t identify with. It’s no wonder average Russians watching don’t perceive themselves to be risk. Natalia insists that this is a driving cause of HIV among women like herself.
In the United States, celebrities like Rock Hudson, Magic Johnson and Elizabeth Taylor were instrumental in changing public and governmental responses to the disease. Dr. Dan Bowers, who in Los Angeles worked with some of the very first cases of HIV, told me he believes that the most important factor in bringing HIV under control in America was not increased government funding or ART improvements, but changes in the public’s perception of HIV led by famous people—the normalization of the disease.
Pavel Lobkov is the only openly HIV-positive, high-profile public figure in Russia. On December 1, 2015, the prominent TV journalist declared his HIV status on live television, a “coming-out” that is called opening your face in Russian. Other than the guests seated at a long table drinking red wine, everything about the long broadcast is emotionally charged. Lobkov recalls how he learned about his diagnosis, hinting at the brief contemplation of suicide it triggered. Lobkov has more than 15 years of experience on Russia’s main channels, but the show he now anchors is on TV Rain, Russia’s last remaining independent channel. Police raids and political pressure pushed the channel off the airwaves to the internet where few Russians are willing, or interested, in paying subscription fees. Although Lobkov set a crucial precedent with his opened face, the majority of Russians weren’t watching.
Along with Natalia’s cohort is another emerging risk group whose numbers are fed by limited efforts to spread information about HIV: men and women over 35. Natalia started a new specialized counseling group in the past few years to serve their growing needs. Russians in that age group tend not to perceive themselves as at risk, even if they are sexually active and do not use condoms. Zhenya, an HIV activist at Yekaterinburg’s AIDS Center, told me that, although she has been dating an uninfected man for three years, she would never tell his parents about her own positivity because, people that age, 45, 50, they don’t know anything about HIV, she says. They still remember Zemphira’s song. She’s referring to one of Russia’s most popular rock artists whose 1999 hit AIDS delivers the catchy refrain: You have AIDS, that means we’re going to die.
It’s a lyric that so many people repeated when I asked, What do Russians know about HIV?
I DON’T KNOW WHY IT CAN’T BE STOPPED
Know your status is the slogan of express texting campaigns aimed at yet another population of poteryashki. Activists pack into vans and canvas cities with the aim of lowering one of the epidemic’s most frightening statistics: one in three Russians infected with the virus doesn’t know it yet. In the Sverdlovsk region, Yekaterinburg’s doctors predicted that for the 82,000 officially registered as HIV-positive, close to 250,000 people are realistically infected.
It can’t go on any more! People don’t have the right not to know about this disease. It’s already become ignorance. It’s even surpassed ignorance.
It can’t go on any more! Vera says, speaking almost as if to herself. People don’t have the right not to know about this disease. It’s already become ignorance. It’s even surpassed ignorance. Vera can’t understand why in a country where healthcare is free, where college attainment rates are some of the world’s highest and where the political system is relatively stable, HIV prevalence rates rank Russia alongside the Democratic Republic of Congo, Nigeria, and South Sudan. I don’t know why this epidemic can’t be stopped. I can’t understand it.
Vera’s frustration with the stigma that enables transmission passed a high water mark at the end of last year, causing her to do something she’s never done before: speak publically about her own positivity. As part of local World AIDS Day coverage on Yekaterinburg’s EKV online TV channel, Vera opened her face.
Are you aware of what’s about to start?, asks the host Oksana Maklakova. Today is December First. Every year on the first of December all journalists used to only call Polina, she says in reference to the activist sitting next to Vera who up until a moment ago was the singular HIV-positive spokesperson in Yekaterinburg. Now they’re going to start calling you up too, the host jokes. In the end it became obvious to just come out and say that it’s just a disease, just a disease that you can live with, Vera replies slowly. The channel reported some of its highest viewership and audience participation numbers for that broadcast.
But even among those who commit their lives to HIV activism, the majority are not fully open, not to mention ready to declare their positivity on television. Zhenya, Vera’s colleague at the AIDS Center, reveals her positivity on a need-to-know basis. Not only does she not plan to tell her boyfriend’s parents but she also doubts she’ll ever tell her two HIV-negative children about her status. Maybe on some level, I still haven’t accepted myself, she says of her decision to continue the more than 10 years of quietly living with the virus.
Maybe on some level, I still haven’t accepted myself.
Self-stigmatization takes various forms. When I visited Vera’s New Life nonprofit, her colleague Yulia references in conversation the retirement money she says she’ll never have to use. I’m 36 already, she exclaims. The HIV-positive woman is in excellent health according to her doctors. She’s attractive, with sharply cut jet black hair and will soon graduate from a business management program. But she laughs at the idea of living to the age of 55, when Russian women begin receiving retirement money. Why won’t you need your pension?, Vera asks her. Well I’d have to live long enough to need it!, Yulia responds. When I tell Yulia that in the U.S. the average life expectancy for a man newly HIV-diagnosed is 75, she’s visibly surprised. It’s about 10 years longer than life expectancy for the average Russian male.
The moment passes and the two women playfully begin arguing over where to spend their retirement together now that Yulia has decided that maybe she will live to see a pension check. Vera hopes to visit Ukraine’s baroque, western capital of Lvov, but Yulia wants to be by the beach, so they settle on Lake Baikal in Siberia. It’s the world’s largest and deepest lake, beloved by Russians for its pristine waters. The region surrounding Baikal coincidentally holds second place behind Sverdlovsk with the country’s highest infection rates. Unless Russia changes its response to HIV, Pokrovsky estimates that the number of infected will at least double to two million in 2020. By the time Vera and Yulia make it to the shores of Baikal, who knows how many Russians will carry HIV.
Some last names were withheld by request.