''They say that AIDS is a conspiracy of international governments, pharmaceutical companies and dark forces''

Sociologist Peter Meylakhs tells about what threat the AIDS-dissidence constitutes

Around the world, including in Russia, the movement of AIDS dissidents is actively spreading, especially large scale it acquired with the advent of the Internet. There are thousands of people denying the existence of the deadly virus. They refuse therapy and promote their ideas among others. Peter Meylakhs, senior researcher at the International Laboratory for Economics, Management and Policy of Health of the HSE has conducted a study of the AIDS dissident movement in Russia and shared the results with Realnoe Vremya.

''They say that it is a conspiracy of international governments, pharmaceutical companies and dark forces''

Mr Meylakhs, who are the AIDS dissidents? What arguments they cite in defence of their position?

This movement originated in America in the early 1980s, when the first cases of AIDS appeared. It's the people who claim that HIV does not exist. They say it is a conspiracy of international governments, pharmaceutical companies, and invisible dark forces who invented the myth about the existence of this virus in order to deceive mankind and to poison them with expensive and toxic drugs, — not just to cash in on people using the placebo effect, pacifiers, chalk in tablets, but particularly to poison. In their opinion, the secret world government and pharmaceutical companies pursue the goal of reducing the population, especially in developing countries (Africa is the world leader in terms of the spread of HIV, Russia is one of the leaders in the European region).

The AIDS dissidents try to bring forward some scientific arguments using pseudo-scientific jargon with scientific terms thus misinforming readers-laymen. An American scholar called it ''techno palaver'', which makes no sense.

They claim that all the evidence of the existence of HIV is fabricated. In the 1980s, when the virus first appeared, there actually were doubts in the nature of the disease. It was an unknown fatal disease. Nevertheless, even when the fact that the disease is viral was not proven yet, people were dying in large numbers. After a year or two, the majority of scientists were sure that it is a virus, there have been many studies conducted. A serious blow to the AIDS dissident theory was made by the advent of the antiretroviral therapy (ARV treatment) in the mid-1990s: there was a wave of disillusioned AIDS dissidents, who saw that the therapy was working, which meant that the virus existed. There is still no medication which could completely cure HIV, but there's a drug that helps a person to maintain a good quality of life.

There are photos of the virus. But AIDS denialists say that it is fake. How can one object? If one has no confidence in science, everything can be called a fake. I can say that Ohm's law is a conspiracy of the British physicists. It is impossible to persuade AIDS dissidents using scientific arguments.

''Prof. Peter H. Duesberg is an icon of the AIDS dissidents, he is an outstanding virologist, he received numerous awards for interesting discoveries in the field of Oncology and Virology.'' Photo: ruslekar.info

But there are also scientists among the AIDS dissidents.

Unfortunately, it is true. Prof. Peter H. Duesberg is an icon of the AIDS dissidents, he is an outstanding virologist, he received numerous awards for interesting discoveries in the field of Oncology and Virology. Among the AIDS dissidents, there are other well-known scientists, even a Nobel Prize winner. But none of them is a specialist in HIV.

How can it be explained? Perhaps, in the 1980s, when Duesberg stated his position, he had legitimate doubts. Perhaps, he simply believed that AIDS has not a viral nature, that it is all about lifestyle, drugs, diet, hunger, and anal sex. When the viral theory started to be confirmed, out of some principle, scientific stubbornness, he refused to believe all the many proofs presented by the scientific community. Although it is purely my assumption. In any case, there are not so many eminent scientists on the side of the AIDS dissidence, it is a drop in the bucket compared to the number of well-known scientists talking about the existence of the virus.

How much of AIDS dissidents are there in Russia? How widespread is this movement?

This is a very important and interesting question. But I can't give an exact answer because it is difficult to count the number of AIDS dissidents, many of them conceal their status.

We should make an important difference: among the AIDS dissidents, there are those who are infected and those who are not infected. People who believe in various conspiracies – they are many, there are people who believe that houses in Moscow in 1999 were blown up by the FSB, that in 2001 the skyscrapers were blown up by the FBI, that there is a Masonic conspiracy, that the HIV virus is a myth. They can believe in anything they want, but for HIV-infected people, the belief that HIV is a myth is dangerous because we see that people refuse treatment and die, they infect their children.

There has appeared a wave of mothers, pregnant women or who have recently given birth of the middle class. Many of them are wealthy, they have a higher education so they have developed a critical thinking, the flip side of which is a critical attitude toward medicine in general. It is hard to say about their number because many of these women conceal the fact that they do not take pills, they throw them down the toilet and say this on the forums on the Internet.

The advent of the Internet has created fertile ground for the spread of AIDS dissidence. For example, in America, one of the centres of AIDS dissidence was San Francisco, and in order to get to the gathering of like-minded people, it was necessary to spend the time and effort. But now with one-click and you're in a group of like-minded people. The biggest Russian group of AIDS dissidents in Vkontakte comprises about 16,000 people. It is slowly growing annually: a couple of years ago it comprised about 12-13 thousand people. Of course, not all group members are active AIDS denialists. But there are also a lot of people are not in groups, however, they post an AIDS dissident information on their pages. Doctors say that this phenomenon is common enough to pose a threat to Russia.

''This movement contributes to the spread of the virus in the society''

Tell us more about your study.

We have investigated the largest group of AIDS dissidents in Vkontakte using the method of network ethnography. During the year we were watching how they interact with newcomers, what arguments they put forward, what are the linkages between group members. I would like to note that we were interested only in HIV-infected people. We conducted 25 interviews with the AIDS dissidents of varying degrees of conviction, as well as those who were dissidents but was disappointed in their views. We also conducted a network analysis, which allowed us to determine the risk group — those HIV-infected who are most vulnerable and susceptible to the influence of AIDS dissidence.

''Due to the nature of my work, I know a lot of HIV-infected patients who take therapy and have a wonderful life, they work, travel, play sports, get married, have children.'' Photo: zppp.saharniy-diabet.com

One of the major results of the research has become understanding the reasons why people join the AIDS dissidence. There are three main reasons.

The first and most important is the discrepancy between personal experience and the AIDS pattern. What is the AIDS pattern? For example, there is the belief that an HIV-infected person immediately infects almost everyone with whom they have a sexual relationship. It is true to some extent, but there are exceptions: under certain conditions — for example, at low viral load, the virus can be not transmitted to the partner for many years. That is why it can happen that a wife can be infected but her husband — not, although they have long been engaged in unsafe sex. The AIDS-pattern also includes the idea that an infected with the virus person who doesn't take the therapy, their immune system is gradually deteriorating that leads to AIDS. This is true. But there are often some unexplained science changes: immunity improves without any treatment. Such person comes to the centre, asks reasonable questions, but does not get the adequate advice. He is said: ''Your job is to treat and follow the instruction.'' Then this person surfs on the Internet, and there they say to him of her: ''Of course, the virus is not transmitted because it does not exist!'' So, the inconsistency of their personal history to the AIDS pattern becomes one of the main reasons for the initiation into AIDS dissidence.

The second reason is banal — a person feels well and, as it happens in the case of other diseases, he thinks he is not ill. There work also some psychological functions of denial. We still associate AIDS with a fatal disease, not with that you can live a full life, taking antiviral therapy. When a person is diagnosed, he doesn't want to believe it, he believes it is a mistake.

The third reason is the unwillingness to take the therapy: ''I cannot be on pills all my life.'' Yes, these pills have a large list of potential side effects. But that's only because the drug is very well studied. The better-studied a drug is, the more side effects will be listed. If the drug has no indicated adverse effects, this does not mean that it doesn't have them, it just means that they are either not studied or they were studied a very long time ago. Antiviral drugs are well studied. Yes, I must admit that some of them are toxic. I also must admit that, unfortunately, there's not always the correct management of therapy of the side effects by physicians. Patients themselves often conceal the fact that they feel bad from these drugs. Otherwise, the same person can be prescribed a different therapeutic scheme, it's not catastrophic. Due to the nature of my work, I know a lot of HIV-infected patients who take therapy and have a wonderful life, they work, travel, play sports, get married, have children.

Is this therapy financially burdensome for HIV-infected people?

It's free. It is not sold in pharmacies, it is issued only at AIDS centres. Until recently we had a relatively good situation, but due to the crisis in many regions, there were shortages of therapy. This is disturbing. AIDS activists and doctors are sounding the alarm. But that is another topic. Of course, if one had to pay for drugs big money, it would be easier for AIDS-dissidents to defend their position. But as long as the state pays, they have to explain that the world government ''fools'' not an individual citizen but the whole countries; the doctors, specialists of AIDS centres — they are either members of the global conspiracy or deceived by propaganda.

What is the threat of AIDS dissidence for society?

First of all, it is dangerous for an infected person because if he doesn't take the therapy, sooner or later he will develop AIDS and he will die. The danger is that he can transmit the virus to others because if a person believes that the virus does not exist, he can practice unsafe sex. Third, the transmission of the virus from mother to child. In fact, this movement threatens the health of dissidents themselves and contributes to the spread of the virus in society.

''Medicine is not such an exact science as physics. We should not alienate people, we should give honest advice. Otherwise, people can start to look for information and get in the wrong place.'' Photo: the-village.ru

Many people react: ''I don't care! I love you so much that if you get sick, let the whole family!''

But what we can do about that, after all, people have the right not to take the treatment and stick to their own views?

At the legislative level, nothing should be done just for moral reasons, adults are responsible for their own health and have the right to die of AIDS. Another thing is an infection. There is an article in the Criminal Code for deliberate infection with HIV. If an HIV-infected person before a sexual intercourse will not warn the partner that he has HIV, he falls under the Criminal Code. If he warns, and the partner doesn't care about it, then there is no crime. Another thing is it is very difficult to check whether he has been warned or not. Nevertheless, there are few cases of litigation in connection with the deliberate infection. I know that many people risk, and when the partner says he has HIV, the answer is: ''I don't care! I love you so much that if you get sick, let the whole family!'' It happens pretty often — because of love, folly, a person can take such decision.

But how to help children not yet born or already born and infected? It is difficult to control. A mother can say that gives therapy but actually she does not do it. Of course, you can take the viral load tests because the therapy blows the ability of the virus to multiply. But it is technically complicated measures.

Yes, not infected with the AIDS dissidents can be left alone — let them believe in what they want. As for the carriers of the virus, then, unfortunately, our research has shown that they are disappointed in these ideas only when their condition reaches a life-threatening stage. In some cases, thank God, they can be saved, if earlier AIDS was an irreversible condition but now I know the people whose immune system was zero but it was restored. But this does not always occur, it happens that a person dies or becomes disabled.

There are people who die and sacrifice themselves for the sake of ''the truth''. They are many. There is a special group in social networks, which is struggling with an AIDS-dissidents: ''AIDS dissidents and their children'', ''Dead AIDS denialists''. There is a virtual memorial of the names and stories of these people. There are also people who are struggling with AIDS dissidents, trying to influence infected, but it only strengthens the views of the latter. Only when their views lead them on the edge of the grave, they begin to believe in HIV.

What can we do? How can we help these people?

We have developed a recommendation based on our research,. It is useless to fight AIDS dissident views directly. Our call is following: ''Believe what you want, but check the health status, viral load and immune status. For example, HIV is a myth and conspiracy. But just in case, go to the hospital and check your health.'' We should not beat them on the head with anti-dissident propaganda.

We should work subtly. And we have to work because on our eyes the people from that group we studied died. They were bad. But in the group they were answered, that is due to stress or something else. All ended sadly. If they just followed their health and at least once in six months was observed in the AIDS centre and were tested, I think a death could have been prevented.

And, of course, we should provide with adequate medical advice, recognising some sort of scientific uncertainty. There is uncertainty in all diseases: a patient with cancer is said that he will live three months, but he lives for three years. It happens. Medicine is not such an exact science as physics. We should not alienate people, we should give honest advice. Otherwise, people can start to look for information and get in the wrong place. Many doctors work well, but maybe they do not have enough time. Psychologists, social workers also should join to support people living with HIV. Also, we need competent management of side effects because it often happens that after the occurrence of side effects a person stops drinking the therapy.

By Natalia Fyodorova