Fear and Uncertainty Lead to AIDS Denialism
December 1 marked World AIDS Day, the purpose of which is to increase global awareness of the disease. Researchers from HSE’s campus in St. Petersburg have spent the last two years studying a movement of individuals called ‘AIDS dissidents,’ or people who deny the existence of AIDS. Peter Meylakhs, Senior Research Fellow with the International Centre for Health Economics, Management, and Policy at HSE St. Petersburg, discusses some of his research results below.
AIDS Dissidents and AIDS Terrorists
Human immunodeficiency virus (HIV) damages the cells of the immune system that have CD4 receptors on their surface. The virus is the infectious agent and reason behind HIV infection. The final stage of HIV infection is acquired immune deficiency syndrome, or AIDS.
But AIDS dissidents either deny that HIV exists or they do not believe that it is the infectious agent of HIV infection. They may also find the statement ‘HIV causes AIDS’ to be unproven, and they may consider HIV/AIDS to be a global hoax started by pharmaceutical companies, the world government, or some other ‘worldly evil.’ It might be possible to write this off as one small group’s harmless error if this were not a phenomenon that poses a threat to public health. If a person does not believe that he or she has HIV, then firstly they do not take precautionary measures and may infect their sexual partner with the disease, and secondly they do not take the necessary medicine, which has irreversible consequences, including AIDS. This not only concerns the person who has the disease, but in the case of pregnant HIV dissidents, the child as well.
Within this movement of denialism are also people who consciously keep their disease silent and infect other people they come in sexual contact with. These people are sometimes referred to as ‘AIDS terrorists.’
‘Why don’t people believe science?’ is a rhetorical question.
When AIDS entered the scene in the 1980s, there was little proof that it was viral in nature, and there were only a few reasonable arguments to doubt this. Dissident even have their heroes – scientists whose theories in some way or another help justify the ideology of AIDS dissidents. One such hero is Peter Duesberg, a molecular biologist and a professor of molecular and cell biology at the University of California, Berkeley. Duesberg believes that HIV is an ordinary, harmless virus. Like other AIDS dissidents, Duesberg is not a virologist, but a cancer specialist. But whatever the specific ideology of AIDS dissidents, their one uniting belief is that treatment is not necessary.
Uncharted territories like AIDS or cancer – areas we know little about – are fertile ground for myths and preconceptions that are, regrettably, very difficult to change
What really surprises me is the fact that AIDS dissidents continue to exist (in Russia the number of dissidents is even rising, unfortunately) even though effective therapies exist, people have stopped dying, and HIV has been reclassified as a chronic disease instead of a fatal illness.
The increased popularity of social networking has contributed to the new rise in AIDS denialism. Now all one has to do is join an online group to be part of a circle of like-minded thinkers who discuss how AIDS does not exist and enthusiastically support one another in their misconception. The AIDS denialism group on VKontakte currently has around 16,000 members, and our analysis shows that the majority of them are people who do not in fact have HIV.
Aside from AIDS denialism, these groups are also known for their anti-Western ideology, general distrust in science and doctors, belief in conspiracy theories, trust in divine providence, and denial of antiretroviral therapy. Many participants of this group believe that people do not die from HIV, but from treatment. People hold these beliefs to varying degrees as well.
Our standard knowledge of AIDS comes from certain shows and popular science publications: people contract HIV and infect others, and then their immune system weakens, viral load increases, and they ultimately die from AIDS, all while infecting others. Social workers, doctors, and activists typically act based on this narrative.
But there are sometimes situations that do not fit into this metanarrative. For example, viral load might suddenly fall without any sort of treatment, while the immune system might improve. The disease develops in different ways, there is uncertainty, not all instances of HIV have been studied, and different fluctuations occur, but this does not mean that HIV does not exist. People join these denialism groups when they encounter uncertainty and fear, and also when they find their consultations with doctors to be inadequate. These groups are always happy to explain everything and combine scientific and pseudoscientific facts. Uncharted territories like AIDS or cancer – areas we know little about – are fertile ground for myths and preconceptions that are, regrettably, very difficult to change.
The Online Community
Throughout 2014 and 2015, we conducted research on AIDS denialism. Our research consisted of three parts, the first being an analysis of the participants of this online group. My colleague Yuri Rykov, who is a Junior Research Fellow in the Internet Studies Laboratory at HSE’s St. Petersburg campus, took the lead on this analysis. He showed that there is a small group of dissidents whose opinion is practically impossible to change, while a large portion of the group consists of people who take part in the discussions with varying degrees of conviction. There are also risk groups who might be useful in conducting preventative work.
In talking to AIDS dissidents, we saw that even the less fervent representatives are not that easy to persuade. Disappointment in this ideology occurs only after people’s health worsens dramatically
We also studied the content that community members shared, as well as the various arguments AIDS dissidents use to defend their position. We studied the rhetoric of veteran users and new members, as well as the type of support that the group gives to individuals diagnosed with HIV.
The third part of the research consisted of an analysis of interviews with disappointed AIDS dissidents. This mostly concerned people who suffered as a result of their misguided thinking. Some wasted time that could have been spent getting treatment, while some lost children due to their belief that HIV is a myth.
Level of Certainty
In talking to AIDS dissidents, we saw that even the less fervent representatives are not that easy to persuade. Disappointment in this ideology occurs only after people’s health worsens dramatically. It’s good that this is now a reversible disease, and many, though of course not all, can be saved through treatment. This is why I find it so important that doctors and society have the following position in regards to these people: believe what you want, but keep an eye on your symptoms and health. As for pregnant women who refuse treatment and thus endanger the life of their child, legal measures might need to be taken in these cases. But this is a very serious question with interconnected medical, legal, and moral aspects. There is not currently a clear-cut solution.
What we discovered in our research, and the thing that can help when working with AIDS dissidents, is that believing in global conspiracy, the golden billion theory, and other ideological concepts simply serves as external reinforcement of an established position. The most important arguments concern one’s own health, fear of admitting one is sick, unwillingness to take medicine that might have strong side effects (though antiviral therapy has come very far in recent years), and most of all, stories of other people who did not take medicine and are still alive. For the people who were guided by these examples, there may already be no chance for treatment.
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