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The USSR recorded its first HIV infections three years earlier than most people think. Why didn’t it help stop the spread? Meduza asks Irina Roldugina and Katerina Suverina, authors of the new book ‘Outbreak’

Source: Meduza

In early December, the publishing house Individuum released a book titled “Outbreak: The Unknown History of HIV in the USSR,” coauthored by historian Irina Roldugina and cultural theorist Katerina Suverina. In the book, the two scholars recount the HIV epidemic’s arrival in the late USSR and how the Soviet authorities’ attempts to conceal it ultimately eroded public trust. Meduza spoke to Roldugina and Suverina about how the HIV crisis unexpectedly united Soviet society and whether there was ever a chance to contain the spread of the virus.

— In recent years, talking about HIV has become less taboo in Russian-language media, thanks to shows like Call DiCaprio! and Patient Zero, translations of international bestsellers on HIV (such as The Great Believers by Rebecca Makkai and All the Young Men: A Memoir of Love, AIDS, and Chosen Family in the American South by Ruth Coker Burks), podcasts like All Positives, and of course Yuri Dud’s documentary film. Why the spike in attention this decade?

Irina Roldugina: In the 1990s, there was already a fairly detailed conversation about HIV in Russia, although this is now largely forgotten. In the 2000s, however, the topic was surrounded by a “wall of silence”: it was rarely discussed, the epidemic worsened, and the number of new HIV cases grew. This silence, in my opinion, sparked grassroots interest — something that was still possible at the time. Nobody was writing about HIV or making films about it, but many people, if not most, knew or at least had heard about it.

It seems likely that creative people — publishers, writers, journalists, filmmakers — recognized the issue’s growing relevance. Especially against the backdrop of a general conservative shift in Russia, where sexuality is taboo and sensitive issues are swept under the rug. This led to the convergence of two factors: prolonged silence and a creative need to engage the subject for once.

— How did you two become interested in the history of the HIV epidemic in the USSR?

Roldugina: I’m a historian and spend all my time in archives. Perhaps, in my case, it’s a bit more obsessive. Sometimes, I request documents on other topics, even from different eras, to get a break from my main research. That’s how I came across letters from the late 1980s at GARF [the State Archive of the Russian Federation] on the topic of HIV, written by citizens to the authorities. The letters were astonishing. They presented a picture entirely different from what we’re used to hearing about that period, especially when it comes to sexuality.

The story we know is the infamous 1986 meme from Lyudmila Ivanova about how “there is no sex in the USSR.” Everyone laughs, though there’s nothing funny about it: What she meant was that there was no open discussion about sexuality in the Soviet Union. And she was absolutely right (though she thought this was something to celebrate).

But in these letters — sent to the press, the Party, and the Politburo — Soviet citizens demanded an open conversation from the authorities. They demanded sex education and, most importantly, information about HIV. The letters came from all kinds of people: grandmothers, mothers, veterans of the Great Patriotic War, Party officials, scientists — everyone asked about HIV. They wrote things like, “Why is there a shortage of condoms in the country?” 

“Where are the brochures on how to use them?” “How do we explain this to our grandchildren?” “Stop hiding information!”

I found this incredibly fascinating and began gathering more information.

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Katerina Suverina: I also came to the subject somewhat randomly, but from the opposite end, by realizing the complete silence today about HIV. At the time, I was teaching gender studies at the Higher School of Economics and working at the Garage Museum, where we went looking for artists who’d worked on the subject for World AIDS Day. The museum’s inclusion department asked for my help. I started digging around and found that the discourse in Russia was nonexistent. Not only were artists not reflecting on their own HIV status, but no one was talking about the virus at all — even though HIV is a well-documented story in places like the U.S.

It shocked me, and I couldn’t believe it myself either. It really showed me how well stigma erases HIV-positive people. I’d been teaching gender studies for years and had never thought about the history of HIV in Russia.

Once I realized this, I knew I needed to educate myself and others. I needed to dig deeper and add something to the discourse.

— Discussing HIV in Russia today, let alone the state’s role in combating the epidemic, seems somewhat risky, to say the least. Many might be surprised that it’s even possible in Russia now to publish a book about HIV that addresses gay people, sex workers, and abuses by the state bureaucracy.

Roldugina: As far as I know, [this] research is still permitted in Russia. But, of course, nothing would surprise us anymore.

Suverina: When we do write about gay people, sex workers, and the state bureaucracy’s abuses, it’s about these issues in the USSR, not in modern-day Russia. And we base our work on archival sources, eyewitness accounts, and the news reports of that era. We say, “Here are the documents, and here are the facts.” We don’t manipulate or hide anything. We’re not even diagnosing the Soviet system; it diagnosed itself in 1991.

— Speaking of manipulation, is it correct to say that the Soviet authorities either suppressed information about HIV or propagated myths about it to manipulate public opinion?

Roldugina: Yes, up to a certain point. Some claimed that HIV was an artificial virus created in basement laboratories at the Pentagon. Others insisted it was only dangerous to homosexuals, drug users, and “prostituted women.” The narrative was that we didn’t have sexual promiscuity like in the West, so the virus didn’t threaten us. But letters written to newspapers and the authorities reveal that Soviet citizens didn’t believe this. Many had already stopped seeing the Soviet media as a trustworthy source of information. The monolithic propaganda system was crumbling before their eyes. Of course, Perestroika and Glasnost played their part here, too.

In the U.S., they initially saw HIV as a problem affecting only marginalized people without access to healthcare; the more affluent in society supposedly had nothing to fear.

But in the socialist USSR, with its universal-access healthcare system, the guiding principle was “the health of each is the health of all.” How else could it have been, with doctors reusing the same syringe on a child, an elderly woman, and then local Party bosses? [Editor’s note: To combat a shortage of disposable medical supplies even in the late 1980s, Soviet clinics and hospitals administered reusable needles, catheters, and intravenous infusion systems.] So, when people heard [from the authorities] that HIV didn’t concern them, they knew better. They understood that HIV affects everyone. 

Then, in 1987, they finally lifted the unofficial ban on discussing HIV in the Soviet press.

— Why did they decide to lift the ban?

Suverina: They were afraid of losing control over the situation. By then, it was clear to the authorities that they couldn’t address a virological problem through the KGB and censorship. Plus, they were watching the United States, where the number of [HIV-positive people] was already in the tens of thousands. Clearly, an outbreak in the USSR was only a matter of time. And outbreaks did occur. 

The first was in Elista [the capital city of the Republic of Kalmykia], where those reusable syringes spread the virus to [75] children [in 1988]. Then, the same thing happened in Rostov, Volgograd, and other places. There’s circumstantial evidence that the KGB still tried to cover this up, but it was no longer possible. Still, they continued falsifying the stats, insisting it was a problem for foreigners. Like they’d report that 70 foreign nationals had been diagnosed with HIV in the USSR, but only two Soviet citizens. Anyway, the authorities had to start talking about the virus even if they didn’t want to.

— When people started talking about the virus, they also started talking about sex. You write that Soviet sex education emerged against the backdrop of the epidemic. Does that mean sex stopped being a taboo subject in the USSR only thanks to HIV?

Roldugina: Before the epidemic, the words “sex” or “sexuality” didn’t exist. There was only “sexopathology.” But HIV wasn’t the only reason.

Suverina: [Pop singers like] Valery Leontiev in his leopard-print jackets and RSFSR People’s Artist Alla Pugacheva in her mini-skirts also contributed to the emergence of sex education in the USSR.

— And what about AIDS-info? In the book, you write that the newspaper became a “roadmap to the realm of sex” for the “innocent” Soviet people.

Suverina: AIDS-Info quickly morphed from a sex-education publication into a newspaper about sex scandals. But I really appreciate that, in its early days, they approached the topic from a scientific perspective and included a glossary of sexual terms in every issue, explaining things like “ejaculation” or “eupareunia” [simultaneous orgasm experienced by both partners]. They taught Soviet people how to talk about important matters.

Before AIDS-Info, which only appeared in 1989, the newspaper Moskovsky Komsomolets started an excellent column called “Anti-AIDS.” They printed rules for safe sex, translated French comics for teenagers about the “mysteries of sex,” and, most importantly, there was the Anti-AIDS hotline — the only one in the country at the time.

The coolest part was that the newspaper emphasized to readers that their sexual orientation didn’t matter. It didn’t matter what had happened to you. “You can talk to us, and we’ll help you find the nearest anonymous testing center.” That kind of thing.

— “Sexual orientation didn’t matter”? Obviously, gay men were and still are in a high-risk group for contracting HIV, but are you saying the USSR started acknowledging not only sex but that gay people exist?

Roldugina: When the HIV problem emerged, suddenly, out of nowhere, homosexuals “appeared,” too. And then the authorities immediately blamed every problem on gay people and other “at-risk groups.”

One of the key findings of our book is that the USSR’s so-called “patient zero” (the first HIV-positive person in the country) was not a homosexual man at all. Drawing on documents, we show that this theory is, at the very least, poorly articulated.

— In the West, people like Elizabeth Taylor and Princess Diana played a key role in fighting the stigmatization of HIV-positive individuals by using their public status to draw attention to the issue. Were there any similar figures in the USSR?

Suverina: I don’t know of a single public figure who spoke out on this topic. For instance, Vladimir Pozner was the president of a charity for combating the spread of AIDS, which was created jointly with the newspaper AIDS-Info. However, as far as I know, he didn’t speak publicly about HIV until the 2000s. But I could be wrong.

Roldugina: First of all, in Soviet times, starting from the 1930s, a particular attitude toward sexuality took shape. Sex wasn’t only relegated to the private sphere; it was reduced to being considered just a part of biological existence. Of course, this didn’t happen by itself — it resulted from deliberate policy.

It’s true that a lot had changed by the 1980s. And we see that gay men and women, starting in the latter half of the decade, were writing letters to Soviet newspapers that showed self-assertion and the will to fight for their own emancipation. But where in this space was the niche for an “outsider”? 

Also, people weren’t accustomed to taking responsibility for an issue that didn’t directly affect them. Even just speaking out about something wasn’t common unless you were a recognized expert. In the Soviet Union, if you were a singer, your job was to sing. If you were a journalist, it was to write articles. 

Suverina: Journalists did try to fight the stigma, but they went about it as part of their jobs. For instance, why did [charity activist and Ogonyok journalist] Alla Alova get involved with the HIV issue? Because she wrote an article about it, realized how dire the situation was, and then started questioning officials about why there weren’t disposable syringes or testing kits.

By 1989, officials weren’t just avoiding the topic but openly blaming each other. The Health Ministry shifted all responsibility to the Medical and Microbiological Industry Ministry, and vice versa. So Alova went to the Red Cross and said, “Let’s set up a foreign currency account to buy syringes. Let’s invite Alla [Pugacheva] to perform abroad to raise money.” And they told her, “We don’t do that kind of thing, and besides, we’re supposed to be helping Africa.”

— In the U.S., the conservative Reagan administration also ignored HIV for a long time, leading to the emergence of protest organizations, like ACT UP, which staged demonstrations from New York to Washington. What about HIV activism in the USSR?

Suverina: An ACT UP equivalent [in Russia] appeared in the 2000s — the Front AIDS movement. But it lasted only a couple of years.

— These were the activists who chained themselves to the Justice Ministry building, demanding access to treatment?

Suverina: Yes. Today, they’d likely end up behind bars for a long time for something like that. Even back then, they were brought to the police station, and they were only released because one of them started cutting themselves.

Front AIDS directly copied some of ACT UP’s demonstrations, but this time across Russia, from Kaliningrad to Moscow. And they had some success. After rallies in 2006, Putin announced at the G8 Summit that antiretroviral therapy would be provided in Russia to everyone [who needed it], free of charge. They allowed the Global Fund [to Fight AIDS, Tuberculosis, and Malaria] to operate in Russia.

With this happening, Front AIDS representatives began speaking out even more about problems at the Health Ministry and about medication shortages. As you know, the Russian Federation guarantees citizens access to medical care as a basic right codified in law. People with HIV didn’t have this right, and Front AIDS kept fighting for it. But they went too far. The organization eventually shut down, and some of its members left Russia.

— Were there really no attempts by Soviet activists to fight for the rights of people living with HIV? What did Soviet dissidents think about the issue?

Roldugina: The only HIV-positive person who openly spoke out against discrimination and demanded better hospital conditions was Gennady Roshchupkin. A young man, gay and unashamed of it. He went on a hunger strike while bedridden in an infectious disease ward in Sokolina Gora. The press covered it, and he appeared on [Vlad] Listyev’s show. After his hunger strike, hospital conditions briefly improved.

He was an extraordinary person! Even now, forget the late Soviet era, not everyone dares to disclose their diagnosis. Gennady told me that when he learned of his positive status, he thought: Well, it’s terrifying — death is just around the corner. But also, a lot of problems just vanished. Like, he wouldn’t grow into one of those old gay men he’d seen in Moscow’s cruising spots, who seemed quite pathetic to him. He was the only one brave enough to stage a protest like that — the first and last of its kind in the USSR.

As for dissidents, they didn’t mention HIV or the persecution of gay people. Human rights activist Elena Bonner even said that the attention given to HIV was “excessive.” However, another activist, Larisa Bogoraz, a former political prisoner, admitted she had been “a prisoner of prejudice.” She was talking about gay people in general, not specifically about HIV. But she was an exception.

— What was the main mistake Soviet officials and doctors made with the virus? Do you think it was even possible to stop the spread of HIV under Soviet conditions?

Roldugina: Of course not. Many Soviet scientists and Moscow doctors saw it clearly from the start, as soon as news from the U.S. emerged. Naturally, the political crisis and economic collapse left little chance for the Soviet Union to fight HIV more effectively than anyone else. The virus couldn’t be stopped. But the USSR could have prepared a lot better for the epidemic. It had that window of time.

Moreover, unlike Americans, Soviet people didn’t need to be convinced that the virus could affect anyone. That was a huge advantage. But instead, they chose a strategy of silence and censorship. The decree “On Measures for the Prevention of HIV Infection” wasn’t issued until 1987.

Suverina: [In the late 1980s], the USSR banned the sale of disposable syringes without a prescription. In the late Soviet system, there were occasional flashes of rationality regarding HIV, but I agree that time was lost. Initially, the strategy was: “Why burden doctors with unnecessary information? We won’t have any HIV here.”

But when they realized it would come — that it already had arrived (HIV cases were snowballing) — they launched courses for doctors and organized laboratories. Sounds good, right? Except only some doctors responded to this initiative responsibly, while others decided: “Why do we need this? We’re out here, minding our own business. To hell with your Moscow AIDS.”

The same happened with the labs. They couldn’t open an AIDS prevention center in Tashkent because the local water utility couldn’t find time to connect the water supply. In Odesa, a laboratory for HIV diagnostics was shut down two months after opening when the sanitary and epidemiological station director claimed that the lab failed to meet public safety standards. (In reality, he didn’t like how close the lab was to a facility manufacturing components for blood transfusion medicines.)

At Sokolina Gora [in Moscow], in the country’s biggest laboratory, equipment wasn’t sterilized, single-use supplies weren’t discarded, and protective clothing for staff didn’t meet regulations. Basically, the system was on its last legs.

— You argue that one of the under-appreciated reasons people became disillusioned with the Soviet system was the HIV epidemic. Currently, according to the World Health Organization’s classification, Russia is experiencing a generalized HIV epidemic, and the virus continues to spread at one of the highest rates in the world.

One of the figures in your book is Vadim Pokrovsky, a member of the Russian Academy of Sciences who’s spent years urging changes to the state’s approach to combating the virus. Are there parallels between the USSR and modern Russia? What are the chances that the HIV epidemic could become one of the reasons for Russians’ disillusionment with the current system?

Suverina: Historical parallels are, after all, just parallels. Most of them boil down to guesswork and have little to do with reality. Soviet society was atomized, and HIV, along with the efforts to combat it and learn about it, in some ways helped to unite that society. Russian society today seems no less atomized, but what could unite it now? I’m afraid even to imagine.

Roldugina: People had hope back then despite how hard things were. They believed in the future. You could really sense it with the start of Perestroika and Glasnost. Now, nobody believes the state will fight for people living with HIV, much less fight for human life in general. Even if people put up with it, how can you expect anyone to become disillusioned with the system if nobody expects anything from it?