''It's easier for people to believe that HIV does not exist'': what is HIV dissidence and why it leads to epidemics

The head of the fund of assistance to women and children with HIV Svetlana Izambaeva tells about the war with sceptics, adolescents with HIV and a children's camp that will help to prevent an epidemic

''It's easier for people to believe that HIV does not exist'': what is HIV dissidence and why it leads to epidemics Photo: svoboda.org

A thirty-four-year-old resident of Tyumen will be judged for refusing to treat her daughter who was diagnosed with HIV. The woman was a so-called HIV-dissident — she refused to believe in the existence of the virus. The movement of ''deniers'' is gaining momentum and threatens to become an epidemic. Over the year, the number of HIV-infected people grew by 5,3% — 103,500 new cases. The infection has gone beyond high-risk groups — those who use drugs, engaged in prostitution. The problem has affected ordinary families, as a consequence, there appeared a lot of infected children — more than 10,000 around the country. There are many HIV-dissidents. Together with Svetlana Izambaeva, head of the foundation for assistance to HIV-positive women and children, the first woman in Russia to talk openly about the fact that she is a carrier of the virus, Realnoe Vremya investigates the reasons of the dangerous movement.

''A child died because parents stopped to go to an AIDS centre and treated her with herbs''

Svetlana, most people learnt about the existence of HIV-dissidents after the scandal in Tyumen. Could you tell us what kind of movement it is?

They are people claiming that the virus does not exist. They spread the ideology through groups in social networks and forums. They are often managed by people who claim to be doctors, they also well express their point of view. Usually, dissidents are those who just learned about their diagnosis. That virus is very easy to believe because people who were diagnosed with HIV are in a state of shock, then they have the stage of denial. It's easy to fall into the hands of scammers being in the denial stage. It is psychologically easier for people to believe in good — that HIV does not exist. I personally encountered such people. There came a couple, they were preparing for pregnancy and realized that they needed to take medication, but, on the other hand, they listened to these dissidents.

How do they explain that the virus doesn't exist?

They say that the human immunodeficiency virus has never been seen and that people do not die from HIV but from other diseases. Indeed, it is true. HIV affects the immune cell – it is embedded in it and starts to destroy, in a split second replicating its copy. Virus particles become greater, the immunity becomes less, and a person dies from other infections — tuberculosis, pneumonia. Antiretroviral therapy that is often prescribed for HIV-positive people stops the growth of viral cells and supports the immune system.

''Usually, dissidents are those who just learned about their diagnosis. That virus is very easy to believe because people who were diagnosed with HIV are in a state of shock, then they have the stage of denial.'' Photo: hiv-spb.ru

''We had a case when an HIV-positive girl infected her boyfriend''

You have a project on HIV-positive children and adolescents, why it is important to pay attention to them?

HIV infection has gone beyond high-risk groups — those who use drugs or work in prostitution. The problem has affected ordinary families: there are a lot of infected children — more than 10,000 around the country. Most of them got the infection from mothers at birth or breastfeeding. Children grow and become sexually active. If they are disciplined and take antiretroviral drugs, they are safe for a sexual partner. But a person who has been taling medication for 17 years since birth has a fatigue from treatment. Children can't tell anyone about their status because it is believed that this diagnosis need to be afraid of and ashamed, they can't go to camp because they need to take medications daily. Sometimes they stop treatment to avoid questions about these pills from others. Not everything you can tell parents and friends may be frightened. Children grow up and begin a relationship, not knowing how to tell their partner about their diagnosis. We had a case when an HIV-positive girl infected her sexual partner, a 20-year-old guy because she was taking medication anyhow — today she takes, tomorrow she does not. It must not be this way. There are 10,000 HIV-positive children in Russia, and if such cases occur, even with one partner, there will be another 10,000 new cases of HIV infection, and if both believe HIV-dissidents — it is 20 million new cases of death.

You are now organizing a special camp for teenagers with HIV. How can it help?

It is a all-Russian camp for children and adolescents with HIV, where they can receive psychological help. We will help them to learn not to take to heart the ignorance of people relying on their internal resources. Children sometimes get denial in medical assistance and face disclosure of diagnosis. It is a psychological trauma, with which even adults are not ready to cope. We have a HIV positive girl infected through breast milk. One day she and her grandmother went to a dental clinic. They trusted medical staff and, of course, they did not hide the fact that the girl had a HIV-positive status. During the treatment, the attitude of the medical staff was calm, friendly. After a while, it became clear that a medical employee told her son-teenager about the HIV status of the girl. In his turn, he told it ''as a secret'' to his friend. Rumours had reached the boy, with whom the girl had friendship that ended abruptly.

''Children sometimes get denial in medical assistance and face disclosure of diagnosis. It is a psychological trauma, with which even adults are not ready to cope.'' Photo: vk.com

It was a tragedy for her, great mental trauma received for what she is not to blame. I wish children with HIV have acquired their freedom and psychological health so they are able without shame to say boyfriend and girlfriend about the HIV status and not to hide when they need to take a pill. The government doesn't pay for such camps, so we collect donations. Ten days for 45 people require 745,000 rubles, we have only 445,000 rubles so far. We ask for help, the account details are available on the website of our organisation.

''When we say that HIV is a plague, we mean death. But HIV has long ceased to be death''

Is it really true that some physicians still have hostile attitude towards HIV-positive people? It seems everyone knows about the ways of transmission, how to prevent infection...

Unfortunately, it is. Still on open Internet sites of the Ministry of Health we hear reports from the districts: ''We held a contest of drawings called ''HIV is the plague of the 21st century''. We should not allow such contests happen. When we say that HIV is a plague, we mean death. But HIV has long ceased to be a death. Thanks to drugs, it is a chronic infectious disease with which you can live and die only of old age. The most important thing — to be treated correctly and in a timely manner. Why do people become deniers and dissidents? Because human is designed so that it would be better to deny, to escape, it is so scary to think about death — it's easier to think that it doesn't exist.

This is a very subtle psychological work — talk to people who deny the virus. Of course, the information is always better perceived from equal people, but even I find it difficult to convince them. They do not believe that I have the virus. They think I deceive them, that pharmaceutical companies paid me. Although I myself take medication for 14 years, and thanks to them I'm alive, people say that I look even 10 years younger than my age. If I didn't take, no one would come to my grave because I have my parents long buried, and my children would not be healthy, or I would not have them at all.

''HIV has long ceased to be death. Thanks to drugs, it is a chronic infectious disease with which you can live and die only of old age. The most important thing — to be treated correctly and in a timely manner.'' Photo: Maksim Platonov

By Darya Turtseva