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How do Russian HIV deniers operate, and would a newly proposed bill banning HIV denial actually stop them?

Source: Meduza

At the end of November, Russia’s Health Ministry introduced a bill into the country’s State Duma that would ban HIV denialism. The bill would amend an existing law called “On the Prevention of the Spread of HIV Infections” to forbid the distribution of “inaccurate information about the effect of HIV infection on one’s health.” That information would fall into three possible categories: denying the existence of HIV, denying its relationship with AIDS, and denying the existence of prevention and treatment methods for the virus. HIV denial is not an exclusively Russian phenomenon — supporters of the ideology can be found in Africa and the United States as well — but Russia appears to be the first country with a shot at introducing fines for expressing denialist beliefs and blocking the webpages of deniers themselves. Given that absence of international precedent, it is very difficult to predict the effectiveness and the possible unintended consequences of measures like the new denial ban. Alexander Yershov spoke with Pyotr Meylakhs, a senior sociology and public health scholar specializing in HIV denialism at the Higher School of Economics, about the Russian HIV denialist community and about whether the Health Ministry’s new bill will really help correct its falsehoods.

Meduza: To understand whether the ban might impact this situation in any way, let’s start at the beginning. Can you tell us how somebody can even deny the existence of HIV in the first place when there’s a ton of information all around about what it is, what it looks like, what its genes are, its proteins, and so on? What’s going on here, and is it susceptible to change?

Pyotr Meilakhs: In one research project we conducted that was based on HIV denialist groups on [the social network] VKontakte and an analysis of their correspondence followed by a series of in-depth interviews, that was one of the main questions. And if we’re being concise, the central conclusion we came to can be stated as follows: People come to HIV denialism through two different paths.

Let’s start with the first one. In these communities, there are certain fundamental rhetorical strategies that are constantly used as arguments: The claim is that HIV is a global conspiracy, that there’s a conspiracy among pharmaceutical companies who make a profit from selling “harmful” medications, that doctors are hiding the truth about all of it because they’re in on the conspiracy too, and so on. So the first thing we saw in our research — and for us, this alone was pretty unexpected — was that for some HIV-positive people, these theories didn’t play any kind of significant role in what they individually did. That criterion — what an individual does, whether or not they take their antiretroviral therapy or not — in this situation, that’s the most important thing. We only researched people who carry the virus, that is, HIV-positive people. And we were looking first and foremost at whether or not they take their course of therapy. Because if you don’t carry the virus and you don’t have to decide that question, then for you, this is a bit of an abstract topic, and you can believe in whatever strikes your fancy. But for somebody who is a carrier of the virus, taking or not taking antiretroviral therapy is literally a question of life and death.

So the first thing we determined is that for a lot of people, all these conspirological arguments were only a justification or a kind of confirmation for a decision they had already made — not to undergo therapy. And that decision was made for entirely different reasons. What reasons? Mostly, people just don’t want to take the medications included in highly active antiretroviral therapy (HAART) either because they don’t believe it’ll help, because they distrust all medications and don’t want to take any pills at all, or because the individual has encountered side effects. We encounter all of those reasons. That’s the first path.

The second path is a path where the theoretical base does have a lot of significance, and it’s connected to situations in which somebody’s personal experience doesn’t match a certain predictable template that is supposed to describe how the illness develops. We’re talking about the widespread perception about how HIV infection happens in general and how AIDS then develops: An individual is infected, their immune status subsequently begins to decline, and their viral load continuously increases, meaning they have more copies of the virus in their body. If the HIV-positive person has unprotected sex with somebody else, their partner is [supposedly] certain to get infected too. Finally, the person’s immune status becomes extremely low, they get AIDS, and they die. That whole complex of perceptions is something we call the “AIDS template.”

Generally speaking, in most cases, that’s exactly how things go, and in that sense, the “AIDS template” really does reflect reality. But the thing is that there are also always exceptions. For example, a woman has unprotected sex with her husband over the course of several years, but infection still doesn’t occur. Or a person learns that they have HIV-positive status, but their immune status at the time isn’t falling as one might expect, and instead, it’s rising. That can happen. Or the viral load doesn’t grow linearly as the “AIDS template” would predict, and it’s actually falling.

Because there are always deviations from the norm, there will always be people whose personal experiences of HIV differ in some way from what a non-specialist knows about this illness. And then, the HIV-positive person starts thinking about certain perfectly rational questions: Why am I getting better and not worse? Why haven’t I infected my wife? Why are things happening to me differently from how they happen to others?

At that point, the person goes to their local AIDS prevention center to get a doctor’s answer to all these questions. And there, oftentimes, instead of openly discussing what exactly is going on or at least saying “we don’t know” (and thereby admitting that doctors aren’t omniscient), the patient is told that they’re asking stupid questions. And just all around, “we’re doctors, you’re a patient, and a patient’s job is to take pills, not to ask questions.”

Of course, that is something you could say, and the person might even agree with you, but the questions that are on their mind still won’t go anywhere. And as they’re searching for answers to these questions, they’ll start looking for answers in ways that are familiar to them, and they can easily run into the HIV-dissident community, where they’ll be told immediately and in highly understandable terms that “of course you haven’t infected anybody, of course your immune status hasn’t declined — that’s all because HIV simply doesn’t exist!”

I want to emphasize that the questions people ask in these circumstances are completely rational, and they absolutely do not indicate any kind of psychological deficiency. On the contrary — among the people we spoke with, there were a lot of people with college degrees, and people like that are more likely to have the urge to grapple with their questions themselves rather than just doing what they’re told. The stories we studied and our interviews with people indicate that the responsibility for the existence of this phenomenon isn’t all n the patients — it’s not just the founders of all these groups and all the people spreading conspiracy theories. A significant portion of the responsibility here lies with the doctors themselves, or rather, to be more precise, it lies in the authoritarian model we still have of “I’m a doctor; you’re a patient.”

So people look for answers to their questions, but how does it happen that they find these highly exotic answers and these groups that are relatively small rather than, say, Wikipedia?

At the time when we were conducing this research, HIV-dissident groups were in the top 10 results for major search engines — we checked Google, Yandex, and VKontakte. Of course, these groups weren’t the first result, but they were on the very first page, and they were very easy to find. Now, that’s not the case anymore. But if you’re persistently looking for answers to your questions and starting from the fact that your story doesn’t match the “AIDS template,” you’re going to come across this stuff anyway. Just generally, the way people look for information, how long they spend doing it, and when they come to rest in that process is a very interesting empirical question. That’s a research project that would be interesting to conduct right now.

People who do end up reversing their denial of HIV practically always do so for a single reason — because their health has drastically worsened. AIDS, unfortunately, does exist, so people who refuse therapy do encounter it sooner or later. Of course, their friends say the decline in their health has nothing to do with HIV, that it’s a cold or a nutrition issue or something else, but when the situation gets serious, many people do change their minds.

Right now, of course, the key question is how passing the amendments that have been proposed to ban the distribution of conspiracy theories about HIV could affect deniers. Would they be more likely to limit contact between HIV-positive people and inaccurate myths, or would they turn into a trump card for deniers who say they’re “just telling the truth, and the whole world’s ganging up on them”?

Objectively speaking, we don’t know anything about this right now. We don’t have any research projects that could measure this. We can only make more or less well-founded hypotheses that are drawn from the logic that exists in HIV denier groups and from our knowledge of closed societies. I’m sure we can expect that for people who have already been sort of irradiated by these ideas, prohibitive laws like these will indeed provide a rock-solid argument in favor of the thought that somebody’s really hiding the truth from them — after all, if HIV exists, then why would it need legal protection on top of that?

On the other hand, for people who haven’t yet encountered this phenomenon but who might encounter it down the line — “potential HIV deniers,” if you will — placing limits on this kind of information might be helpful to some degree. That said, we don’t know what the proportion of help to harm might be. It’s important to understand that prosecution will create “martyrs” within the HIV denial community out of the people who fall under the law. And that, first of all, confirms that “we aren’t being punished for nothing, which means the ‘spidyuki’ (‘AIDSies’) feel like they’re under threat. Second of all, making “icons” out of these people for a sympathetic audience makes the archetype of a “real conspiracy fighter” more concrete. And, of course, it increases basic human sympathy toward those who are prosecuted and increases in-group solidarity.

Although we don’t have objective data, my subjective opinion — and this is based not only on HIV research but also on other projects where we studied drug users and the reaction to bans on information about so-called “drug propaganda” — [my opinion] is that all of these repressive measures in the realm of information policy are counterproductive. All that happens under those conditions is the formation of closed societies. Those groups aren’t just far more difficult to study; the people in them are radicalized very quickly and irreversibly.

If the government truly believes that it wants to fight HIV denial as a phenomenon, it would be far more effective, in my view, to reject that authoritarian model of the doctor and the patient that frames the patient’s job as taking pills without asking questions. That would give people a sense of control over what’s happening with their health, and the grounds for this phenomenon to arise would be drastically reduced.