MOSCOW—Nika Ivanova was 18 when she first learned about HIV. By then, it was too late.
Sitting in a sterile clinic here on a sunny winter day—the late singer Freddie Mercury’s birthday, of all days—the doctor told her she would likely die, and that it was her own fault.
“I became a person of a second class,” the now 33-year-old psychologist told me as she brushed her short brown bob away from her eyes. “He assumed I was a drug addict or a prostitute.”
But Ivanova was neither. Like most of her friends, the teenager who dreamed of one day becoming a doctor had never learned about safe sex or sexually transmitted diseases, in school or at home. She thought people contracted HIV only through unsafe drug use.
Ivanova’s light hazel eyes welled with tears as she left the doctor’s office that day, convinced her young life was over. But she did not die. Instead, she sought out information and treatment on her own. Fifteen years later, Ivanova is now an outspoken activist fighting to dispel widespread myths about HIV, educating Russians on the real risks so they might have a fighting chance.
It’s no easy feat: The Kremlin and its allies are pushing a socially conservative, hands-off, and often church-influenced approach to sexual and reproductive health, as well as drug policy. Fueling an epidemic, state policies and inaction have led to more cases than ever of Russians contracting or dying from HIV/AIDS. At least 14,631 Russians died from AIDS-related symptoms in the first half of 2017—an increase of more than 13 percent from the year earlier. Russia now hosts the largest HIV epidemic in Eastern Europe and Central Asia, which, along with the Middle East and North Africa, make up the world’s only two regions where the rate of HIV cases is rising.
“It’s explosive,” says Christopher Beyrer, an epidemiologist and professor at Johns Hopkins University who previously served as president of the International AIDS Society and helped run an anonymous HIV testing facility here in Moscow before pulling out due to Russian policy hostile to U.S. funding. “The policies that they have been sticking to in the Russian Federation and attempting to impose in countries they seek to control are clearly not evidence-based,” he adds, calling the shocking rise in HIV rates a clear “failure of policy and practice.”
In January 2016, Russia registered its millionth HIV-positive person, a 26-year-old woman. Actual numbers are likely much higher, according to health experts. Across much of the world, including the United States, the rate of HIV is declining, thanks to strategic programs like clean needle exchanges, increased awareness and better access to antiretroviral therapy. In the U.S., for example, the annual number of overall HIV diagnoses decreased by 5 percent between 2011 and 2015, according to the Centers for Disease Control and Prevention. But that’s not the case in Russia: Here, the rate of HIV infections is rising faster than in sub-Saharan Africa, host to the world’s largest HIV epidemic, where an international effort has slashed the rate of new HIV infections.
Vadim Pokrovsky, head of Moscow’s Federal AIDS Center, has called Russia’s HIV epidemic a “national catastrophe,” using language rarely uttered by government officials, let alone the loathed, politically charged “e” word: epidemic.
Russia’s growing HIV crisis is seemingly no match for the Orthodox Church, which preaches faith and family values as the cure-all for the virus. A burgeoning alliance between Russian President Vladimir Putin and the church in recent years has fueled an environment where sexual education in schools is forbidden, clean needle programs are shunned as sinful and attacks on women’s and gay rights are state-sanctioned.
“In Russia, the church and the state go together,” said Ivanova, the HIV-positive activist, shaking her head. “They talk about how sexual education will only worsen the [HIV] problem. It’s a wave—you really feel it.”
Things took a turn for the worse in 2011, when Putin alleged that pro-democracy protests of tens of thousands of Russians were, in fact, instigated by then-Secretary of State Hillary Clinton and U.S.-funded organizations. The following year, Russia would expel USAID after two decades of work in the country, where it provided HIV and sexual and reproductive health assistance, as well as democracy development and other programs. The Global Fund also withdrew its substantial support for HIV programs in Russia, turning its focus to poorer countries. But Russia never filled that gap with funding.
In 2012, Russia moved to label organizations as “foreign agents” who received foreign funding and also pursued activism counter to the government line, including some women and LGBT rights groups and those combating HIV. This forced some organization to shut down or dramatically scaled back efforts.
Further blocking access to health care and resources, Putin signed a controversial church-backed bill into law in 2013 that criminalized the dissemination of information about homosexuality to minors—or, in government terms, “propaganda of nontraditional sexual relations.”
Dr. Beyrer’s NIH-funded testing clinic in Moscow suffered immediately. A key website that provided lifesaving information on the clinic’s whereabouts and services was shuttered. But it wasn’t just the Russian Orthodox Church: U.S. evangelical funding and influence have also fueled the conservative tide in Russia, says Dr. Breyer. “The [anti-gay law] language was in some cases lifted whole from legislation passed in Nigeria and Uganda,” he says, referring to the U.S. Christian right’s influence on anti-gay legislation in parts of Africa.
In February, Putin passed a controversial church-backed bill decriminalizing some forms of domestic violence. Now, husbands can beat their wives and get away with it as long as they’re first-time offenders and do not inflict enough bodily harm to require hospitalization. Women’s access to abortion, currently legal and provided by the state, could also be threatened. The church-led anti-abortion movement is gathering steam, capitalizing on nationalism and declining Russian birth rates to sway attitudes against legal abortion.
Patriarch Kirill, head of the Russian Orthodox Church, who has deemed Putin’s presidency a “miracle from God,” has called for the “establishment of family values, ideals of chastity and marital fidelity” and a focus on “moral education”—not sexual education. The church’s presence on social issues is so suffocating that one researcher working on issues of HIV in Russia quipped that he saw “more Orthodox priests than condoms” at a recent HIV conference in Moscow.
And social conservatism is seeping into other institutions of the state as well. Last year, a study by the Russian Institute for Strategic Studies, or RISS, claimed condoms led to dangerous behavior and only fueled Russia’s HIV woes. RISS—largely seen by the West as a Kremlin propaganda arm—advocated instead for Russians to pursue faithful heterosexual marriage to prevent HIV. This year, Russia’s Ministry of Education and Science reportedly deemed use of the word “condom” too inappropriate for an online educational lesson intended for World AIDS Day.
Only about $338 million goes toward Russia’s HIV budget annually, not nearly enough to begin with, and almost none of which funds sexual education programs in schools or elsewhere that could prevent HIV. In comparison, the United States, which hosts a population roughly 2.2 times greater than Russia, spent $32 billion last year on the National Institutes of Health’s research budget for HIV/AIDS, which funds both domestic and international research. (In March, President Trump proposed a 22 percent cut to NIH funding, but Congress has pushed back.)
Despite the rising number of new HIV infections, Russia is not increasing the amount of HIV medication accessible to the public or ramping up health education efforts. Instead, parents are expected to educate their children at home on the risks of unsafe sex and drug use. HIV experts say that’s largely still not happening, and a generation of children are growing up without life-saving knowledge of HIV and its risks.
Meanwhile, top Russian officials cast doubt on the need to combat the disease. Deputy Director Tatyana Guzenkova of RISS, for example, has said that the HIV epidemic is merely an “information war” waged by the West on Russia.
That’s despite medical professionals in Russia and world wide sounding the alarm over a growing epidemic. In the past, most HIV positive Russians contracted the virus through intravenous drug use. That’s changing: The number of people contracting HIV from heterosexual sex will soon overtake new HIV infections from drug use, according to experts. And an increasing number of newly infected Russians—some 38 percent in 2015—are women.
Yasya Medvedeva, a 40-year-old activist and former drug addict who tested HIV-positive, says the information war is being waged at home. Here, she says, in her efforts to attain her university degree in social work, she studies academic books still publishing dangerously false information about HIV. “The people who are supposed to help people like me don’t know what they’re talking about,” she says, angrily. That’s why she devotes her time to E.V.A., a Saint Petersburg organization advocating for and assisting women who are HIV-positive.
Despite the government’s reported success in decreasing the rate of mother-to-child HIV transmission, Russian women ages 15-24 are still two times more likely to contract HIV than their male peers. That’s due in part to biology (male-to-female transmission of HIV is more effective than female-to-male transmission) and a variety of other factors. Russian women face a different set of barriers when it comes to HIV, explains Medvedeva. Many of the women she helps also suffer from domestic violence, sexual violence and mental illness.
Despite Soviet-era policies that allowed Russian women often greater rights than women in the West, Russia’s path to conservatism is now heralding an era of shrinking women’s rights.
“The mentality toward HIV has not changed,” says Dr. Tatiana N. Vinogradova, deputy head of scientific research at Saint Petersburg’s city-run AIDS Center. “People are still afraid of HIV-positive people—the ‘dangerous people.’”
Vinogradova, whose own husband is HIV-positive, lambasts the lack of an organized, science-based, government-led campaign to slow the spread of HIV. She says her center in Saint Petersburg has a more forward-thinking attitude toward HIV than Moscow has. Why? “We use the word condom,” she says with a laugh. “And we’re not afraid of being punished.”
In lieu of a robust state response to the HIV crisis, smaller organizations and centers across the country attempt to fill in the gaps, despite little funding and pressure from the government. Every day, sometimes twice a day, volunteers from the Andrey Rylkov Foundation for Health and Social Justice perform HIV tests and pass out clean needles, condoms, alcoholic wipes and drug-related information in Moscow in an attempt to save lives. Despite their state label as a “foreign agent,” they often find themselves able to help dozens of people a day from their heated van turned mobile clinic, and on foot. “A couple came today and asked for an HIV test,” says social worker and psychologist Lemma Remm, a volunteer with Andrey Rylkov Foundation, on a recent snowy night of outreach in Moscow.
Russia has banned methadone treatment, slammed as an ineffective “liberal concept” by Russian Foreign Minister Sergei Lavrov. The opiate substitution therapy has been proven to reduce the risk of HIV by helping drug users and addicts get clean and stop sharing needles.
While many of the drug users are men who seek out supplies from the van outreach program, Remm says they also help female prostitutes who are in grave danger.
In her Timberland boots and striped winter hat, Remm smiles as people approach the van asking for access to clean needles. Over time, she says, the volunteers try to build enough trust to provide information on ways to get clean. “I’ve seen results with the people who come,” she says. “They share information. That’s why I’m doing this.”
For Ivanova, the psychologist, such access to information is key. It’s why she’s still alive.
As Russia’s decades-long HIV crisis takes on a different shape, experts say more and more Russians like Ivanova—non drug-using Russians who are part of mainstream society—are becoming infected, although drug-use is still a leading factor fueling the country’s HIV epidemic.
In recent years, Ivanova has begun living openly as an HIV-positive women in the hope that her story will counter the narrative that only drug addicts or prostitutes can contract HIV.
Since coming out as HIV-positive, Ivanova has since fallen in love and given birth to a healthy baby girl, Yeva. In the fall of 2016, she posed for a portrait for Russian publication GEO Magazine in an effort to jump-start conversation and action around HIV.
On the glossy cover, Ivanova stands in front of the Moskva River, just a short walk from the Kremlin. Holding lilacs and a matching purple umbrella, she smiles for the camera, no longer ashamed.