Russia: Death By Indifference

Russia is dying. Much has been written about the country's demographic crisis—the declining population, the low birth rate, the life expectancy that puts the country on par with the world's poorest—but bleak as those figures are, they don't yet include masses of people dying as a result of the country's HIV/AIDS epidemic. The World Bank estimates that in 2020, Russia will lose 20,000 people per month to AIDS.

Russia has experienced the fastest-spreading HIV/AIDS epidemics in any one country in history, but there remains a lack of effective preventative measures to slow it down—in large measure because the people most affected are also the country's most reviled.

In a country of 143 million people, roughly one million are HIV-positive. That means Russia has one of the highest percentages of HIV-infected people in the world outside sub-Saharan Africa. Robert Heimer, an epidemiologist at Yale who has spent years studying the intersection of drug use in Russia and its HIV/AIDS epidemic, says as many as five percent of all young people are infected. The Joint United Nations Programme on HIV/AIDS, also known UNAIDS, reports that 1.8 million Russians are current injection drug users.

"Unscientific" is the kindest word one can use to describe the few drug treatment options that are available, and public education about HIV and AIDS is almost nonexistent. A man named Eugeny Roisman became a media hero several years ago for practicing this form of drug therapy: kidnapping addicts, beating them, and chaining them to their beds while they go through withdrawal. Opiate substitution therapies such as methadone maintenance—the gold standard of heroin addiction treatment and the only method that demonstrably works—are illegal.

Russia was once a recipient of funds from the Global Fund to Fight AIDS, Tuberculosis and Malaria—the world's premiere non-governmental organization in the fight against the spread of HIV and AIDS—but it now rejects that assistance, largely because it doesn't want to follow international protocols for fighting the disease, such as distributing clean needles to injection drug users. Nongovernmental organizations that advocate harm-reduction strategies—needle exchanges, providing condoms to sex workers—face police harassment and criminal penalties.

Russia's major response to the crisis has been to make anti-retroviral (ARV) drug therapy available to people with full-blown AIDS—but eligibility for heroin users, the main population group with HIV, is spotty. There is anecdotal evidence, some of it reported in the medical journal The Lancet, that even non-heroin addicts must cope with ARV drug shortages.

Anya Sarang is a Moscow-based public health activist, and an outspoken critic of Russia's record when it comes HIV/AIDS and heroin use. "The Russian government's strategy of treating drug use and tackling its HIV problem is neglect and denial," says Sarang. "It is totally opposing all the effective interventions that are commanded by international organizations, while not offering anything to prevent the spread of HIV among injection drug users."

This dual failure—against intravenous drug use and against the spread of HIV—is at first glance hard to fathom. How could an ambitious first-world country allow potentially millions of its own citizens to die needlessly?

Russian leaders don't want to be told what do by the West, whether the issue is military assistance to Syria or how to treat drug addiction. But this is about more than recalcitrance toward old enemies. HIV and AIDS haven't struck all segments of the population equally—their victims are members of groups the country views as undesirables: heroin users, sex workers, prisoners, and gay men. Not everyone thinks these undesirables are worth saving.

"Some people in the Russian government actually believe that these people are not redeemable and not worthwhile human beings," says Robert Heimer, who has worked extensively in St. Petersburg.

AIDS came to Russia later than it did to other parts of the world. Perhaps that explains why one lesson remains unlearned to the Russian public: that what begins with at the margins of society spreads quickly to core. It's already underway: the HIV epidemic started among male intravenous drug users; it is now spreading in large numbers through sexual contact to heterosexual women.

The national reaction, however, remains a massive shrug. This goal of this project is to give, in small measure, a voice to those who have none.

The Heroin Dealer

Russia's HIV/AIDS epidemic started with a surge in heroin use and heroin trafficking in the early 1990s.

The Soviet Union had dissolved, borders were opening, and the state's control of personal behavior was evaporating. Young people were poor, unemployed, and eager to try anything Western: music, fashion, drugs—all of which were available, minus any education about the dangers, especially about the sharing of needles.

Heroin had long made its way to Europe from Afghanistan along Russia's massive southern border; with the Soviet government no longer in control of those borders, heroin made its to major cities: Moscow, St. Petersburg, Kazan, and Yekaterinburg. A key question has always been whether police at the time were complicit in the trade of the drug.

In St. Petersburg I spoke with a 36-year-old woman named Olga (she declined to give her last name). She says dealt heroin in her building complex during that time; I asked whether she was ever scared of being caught by police.

"I can definitely tell you I wasn't afraid of the police," she says.

The results of intravenous heroin use on a mass scale were devastating. There were 1,000 cases of HIV in 1995; by 2002 there were 250,000; today most experts estimate there are over one million, most caused through intravenous heroin use.

Olga told me she wishes she could apologize to the people to whom she dealt the drug. The problem, she said, is that most of those people are dead.

The Parent

The Russian government's most aggressive move in the country's HIV/AIDS epidemic—arguably its only effective move—has been to provide antiretroviral drugs to pregnant women who are living with AIDS. The goal is to eliminate mother-to-child transmission of HIV. But the consumption of those drugs is no guarantee that no child of an HIV-positive mother will become infected.

Irina Zolotova has AIDS; her infant son is HIV-positive. He shares her bed in a tiny room on the outskirts of St. Petersburg.

HIV in Russia is spreading most quickly among the sexual partners of people who became infected in the 1990s, when it seemed every young person was experimenting with injection heroin use. Irina was one of those early heroin users. She is a part of the massive cohort of Russians in their late 30s and early 40s that has transitioned from being HIV-positive to having AIDS.

The irony isn't lost in Irina that her generation, the most hopeful in Russian history, the one that experienced political and personal freedom in its youth, is becoming housebound and frail in middle age. "It's difficult to say," Irina says, "but it really feels like everything has left you, and nothing is left."

The Prisoner

In the early 2000s, Russia had more prisoners per capita than the United States. A 34-year-old man from the North Caucuses named Valery was one of them. (He asked me not to use his last name.)

The course of Valery's life is not uncommon for men his age. At 15 he started using heroin. He joined a gang. "I was a tough guy," he says.

As the Russian state began to regain strength in the late 1990s, he found himself caught in Russia's equivalent the U.S.'s war on drugs: a war fought primarily by law enforcement. In 2004, in an overcrowded prison near St. Petersburg, he learned he was HIV-positive. Prisons back then were incubators of infectious diseases, including tuberculosis. Valery isn't sure how he became infected.

Released in 2010, he is kept alive by the antiretroviral drugs provided by the government. Valery says he is finally done with using heroin. "I don't have any temptation to go back to that life," Valery says. "I just grew up and realized I needed to have another life."

The Patient

I met Alex in a small rehabilitation center outside of St. Petersburg. It houses around 15 young men and women; they live there for a month and participate in 12-step program similar to Narcotics Anonymous. For most patients, it isn't their first time in this kind of place.

"I've taken detox programs six times in my life," Alex says. He declined to give his last name.

Patients in 12-step programs tend to talk about their drug history; they are accustomed to presenting it to groups and find it therapeutic to speak frankly about it. Alex talked to me about the late 1990s, how at a time when the world's public health community knew the dangers of sharing needles, the there was no warning in Russia about those risks.

"Our government wasn't thinking about the citizens of the country," Alex says. "And this is the main problem of Russia, throughout all its history."

The Activist

At one time Sasha Volgina was an optimist.

The 36-year-old activist first learned she was HIV-positive in 2002. She initially believed, as most Russians did at the time, that anyone infected with HIV would be dead within six months. She eventually learned about anti-retroviral drug therapy. Those drugs keep her alive.

Sasha famously appeared on a Russian talk show in 2008; the main argument against her claim that Russia should make more drug addiction treatment options available was HIV may not even exist. "People don't realize it's an illness," Volgina says. "They think it's a sin."

All NGOs, especially those with connections to foreign countries, operate under an oppressive level of scrutiny; may risk being prosecuted under the new "foreign agent law" simply for receiving donations from abroad and engaging in anything broadly defined as "political activity."

Her goals include bringing harm reduction practices to Russia—the distribution of condoms and clean syringes, opiate substitution treatment for heroin dependency. At one time it seemed like all of that was possible.

"We realized in something like 2006, that harm reduction programs were not really supported by the government," Volgina says. "At first we thought it wasn't so bad, but after that, year after year, it was worse and worse and worse."

The 'Foreign Agent'

Irina Maslova understands the risks of being a sex worker in Russia. She was one herself years ago. She now runs a charity called Assistance; its goal is to provide street prostitutes with condoms, clean needles, and information about protecting themselves against getting HIV.

Because this activity is in conflict with official Russian policy, and her organization receives funds from abroad, Maslova risks more than just the retaliation of organized crime. Russia recently passed a new law that labels any NGO that receives foreign funding as a "foreign agent."

The choice of language is no accident; it is the very phrase used by Stalin to justify sending people to the Gulag. "We are being pressured to stop working for the benefit of our country," Maslova says.

It is difficult to overstate the dangers sex workers face in Russia, not simply from infectious diseases, but from violence. Experts estimate that there are just under one million sex workers in the country, most of whom live at the whim of pimps and the police, with no practical recourse if they are raped or assaulted.

"Sometimes I wish that politicians would have a family member with HIV," Maslova says. "Or with a drug problem. That way they would understand that this problem actually exists."