Anna Fedoryak: “I want to cry when I look at the statistics on HIV in Europe. The figures are not comparable”
The human rights activist on outdated ideas about the immunodeficiency virus and new developments in the field of AIDS treatment
The federal AIDS centre has recently published statistics: 101,345 new HIV-infected people were revealed in Russia in 2018. In total, since the registration of the first HIV carriers in 1987, 318,000 HIV diagnosed people have died in our country. Today, it ranks the fourth in the world after South Africa, Nigeria and Mozambique in terms of the growth rate of the number of people living with HIV, and the first in Europe. Human rights activist Anna Fedoryak told in the interview with Realnoe Vremya about the forms of discrimination faced by HIV-infected people in Russia.
“There is practically no HIV dissidence in Western Europe”
Anna, I’ve read in one of your articles that not all HIV diagnosed people receive treatment in Russia. Only 75% of those diagnosed with the virus are registered in AIDS centres, but only half of them receive treatment. What is the reason?
This is a complex multidimensional topic. Why is not everyone registered at the dispensary, which gives free treatment? For various reasons. Not all people treat the diseases they have. Because they are afraid, busy or do not consider it important. AIDS dissidence also affects this.
Until recently, it has been believed that people who have not only HIV infection but also a decreased immune status and an increase in the concentration of the virus in the blood to a certain level should begin treatment, after which they were entitled to therapy. Some doctors still prefer to treat their patients some time after diagnosis, arguing that, for example, the possibility of side effects, the negative impact of drugs on the liver. It is now believed that treatment should be started as soon as possible, and this approach is already being implemented in some regions. For example, Moscow Oblast states that they have a minimal gap between the diagnosis confirmation and the beginning of treatment.
You have mentioned HIV dissidence. Can you tell me more about it? How common is it in Russia?
It's one of the conspiracy theories — one of the ideas about the planet Nibiru, the denial of the moon landing, or the theory of the construction of Egyptian pyramids by aliens. The only difference is that HIV dissidence has real negative consequences for people's health and lives. What to do about it? The main way is enlightenment.
What about punishment?
The Russian ministry of health has proposed the idea of punishment for spreading the ideas of HIV dissidence. But punishing thoughts and ideas is a very controversial practice. Education and enlightenment is the healthiest approach, it is long and difficult, but stable and effective. For example, in Western Europe, there is virtually no such phenomenon as HIV dissidence. When I tell my friends in Europe about HIV dissidents, they laugh and do not believe that this happens. They succeed to exclude this phenomenon at the level of society with the help of education and the right public attitude.
So, HIV dissidence is a consequence of ignorance?
I believe that HIV stigma plays a big role in spreading these ideas in our country. Many people deny the very existence of HIV precisely because of the fear to accept and understand this reality, to start treatment. It is much easier psychologically to believe those who claim that none of this exists. I think it is not so much ignorance as a weak reflection.
The Russian ministry of health has proposed the idea of punishment for spreading the ideas of HIV dissidence. But punishing thoughts and ideas is a very controversial practice. Education and enlightenment is the healthiest approach, it is long and difficult, but stable and effective
“If a person with HIV reaches an undetectable level of the virus in the blood, he or she cannot transmit the virus sexually at all”
What stigma or outdated perceptions of AIDS exist in Russian society?
People are afraid of HIV, it is difficult to call it a false idea, but it is clearly outdated. HIV remains an incurable disease, but today there are drugs that can control the disease, and the life expectancy of a person with HIV is equal to that of a person without HIV. Starting from the ‘80s, the fear of HIV is deeply entrenched in the minds of people far from medicine, but since then much has changed. HIV today is not fatal, but a chronic disease, such as diabetes, which requires constant monitoring and medication.
HIV stigmatization is due to that it is often associated with key groups practising socially reprehensible behaviour in Russia. It is drug use, sex work, homosexual relationships. Indeed, practices such as drug use and high levels of sexual intercourse affect the risks of HIV transmission.
On the other hand, the trend of recent years shows that in Russia more than half of the new cases are heterosexual transmission of the virus — it has nothing to do with drugs and gays, we are talking about heterosexual permanent couples, sometimes even married. We know that a lot of people have affairs. It often happens that a man becomes infected when taking drugs, perhaps a one-time. He's not a drug addict, he just tried and then entered into a stable relationship with a woman and infects her, and HIV is detected during pregnancy. During pregnancy, many tests are given, including an HIV test, and for Russia, this is the usual way to detect infection. A recent report on HIV surveillance in Russia says that in Irkutsk Oblast and Kemerovo Oblast 2,6 per cent of all children born in 2018 were born to HIV-positive mothers, in Sverdlovsk Oblast — 2,7 per cent of children, in Samara Oblast — 2,3 per cent.
Tell us about the latest research in the field of HIV prevention.
Very cool stuff has been proven in recent years. The point is as follows: “Undetected means not transmitting.” For a long time, doctors have noticed that in couples where the HIV-positive partner receives effective treatment and his viral load is reduced to a minimum level, his sexual partner is not infected even with unprotected sex. Recent large-scale studies have shown that this is true — if a person with HIV as a result of treatment reaches an undetectable level of the virus in the blood, then he or she cannot transmit the virus sexually at all. That's really cool news. It reduces stigma around people living with HIV. On the other hand, it helps advocate access to treatment, confirms the need for treatment and its financing. Because it helps not only HIV patients, but also the whole society.
This is still a fairly little-known fact. When I worked with the Life4me+ project, we launched the programme, and even doctors found it difficult to believe in this, there was a big psychological barrier. Because the fear of HIV remains very high in society. But this point is supported by evidence-based medicine.
The trend of recent years shows that in Russia more than half of the new cases are heterosexual transmission of the virus — it has nothing to do with drugs and gays, we are talking about heterosexual permanent couples, sometimes even married
“In some countries, there are literally dozens of new infections a year. In Russia — 80,000-100,000”
What about preexposure prophylaxis?
This is also a relatively new phenomenon. It turned out that if the drugs used during treatment are taken preventively, they can protect against HIV infection. This is especially true for people in discordant couples when one is HIV positive and the other is negative. Preexposure prophylaxis has extensive experience of application and effectiveness. Often it is taken by people who do not have a permanent partner, they often change their sexual partners. Preexposure prophylaxis allows them to protect themselves from the virus.
For our country, it is clearly not the question of the next few years due to the large conservative turn that dictates the attitude to the problem of HIV. But it's an effective measure, and I know quite many people use it privately. This is one thing that is important to know: there are more ways to protect yourself from HIV than before.
What do you mean by a conservative turn?
This is happening in society in general. HIV is a broad topic, it is not the “innocent” flu that can be vaccinated and infected by sneezing on someone. The topic of HIV is related to sex and drug use. Therefore, we cannot talk about HIV without mentioning inter-sex and sometimes same-sex relationships, which is generally scary from the point of view of the conservative view of life. This makes prevention very difficult in our country. Because prevention is impossible without the frank conversation about the ways of protection during sexual contact. It's the recognition that people can have more than one partner at a time. Like it or not, this is the reality. These things need to be recognized to solve the HIV problem. And very young people, yesterday's students also have sex, and often with more than one partner. But in Russia, there is a law on the protection of children from information that can harm their moral health. Therefore, the mention of sexual relations for a minor may be regarded as a violation of this law. The information that if you take drugs, then at least use disposable tools, is also unacceptable. The only acceptable formulation is that drugs are evil and should never be tried.
In general, in my opinion, the conservative turn comes into an obvious collision with reality. So far, the realistic approach is losing, but it hits all of us hard. Because if you look at the statistics on HIV in Western Europe, I want to cry. The figures are not comparable. In some countries, that's literally dozens of new infections a year. In Russia, it is 80,000-100,000 per year. Even in terms of percentage, it's still a big difference. More than 2 per cent of pregnant women in Russia are infected. That is, out of every hundred, two or three young women of reproductive age have HIV infection. Among Russian men aged 35-39, more than 3 per cent have a proven diagnosis of HIV infection. In world statistics, only Africa is ahead of us.
Out of every hundred, two or three young women of reproductive age have HIV infection. Among Russian men aged 35-39, more than 3 per cent have a proven diagnosis of HIV infection. In world statistics, only Africa is ahead of us
“In Russia, there is a criminal penalty for HIV infection of another person and even for putting in danger of infection”
What problems do people living with HIV face?
People with HIV are discriminated against everywhere — for example, they are fired from their jobs. More precisely, forced to resign, because they cannot be dismissed for it by law. If a person works as a cleaner in a hardware store, his HIV status is not important, he is not a donor. But if, especially in small towns, people find out about the disease, a person is forced to resign — usually on pain of disclosure of the diagnosis. In general, the mystery of the diagnosis in our country is protected by law. But with HIV, this is often broken. This is also the result of stigma. If someone accidentally finds out about HIV infection from a colleague or neighbour, they can tell other colleagues or neighbours about it — in order, as they think, to protect them from risk. This is a specific violation of the law and human rights.
In Russia, there is a criminal penalty for HIV infection of another person and even for putting in danger of infection. If the conscious infection of another person can still be incriminated, then putting in danger of infection I do not understand. But this article is regularly used in practice. Recently, there has been a high-profile case in the Volga Region. A young girl was dating with a man, offered him to use a condom, he refused, she did not tell him about her HIV status. Then he found out she was infected. She didn't infect him, but he sued her for putting him at risk of infection. Thus, this law actually says that you are not responsible for your health, but your partner is, who must take care of you.
Or the recent story of a woman who breastfed a child is also one of the ways HIV is transmitted. She was accused of putting her child at risk of infection and is now being prosecuted under the same article.
This is one of the reasons why sometimes people don't go to an AIDS centre and start treatment. Because in the AIDS centre, when confirming HIV infection, a person signs a certificate that he or she knows about his or her status and that they are criminally responsible for infecting another or for putting in danger of infection. In fact, it turns out that a person with HIV who knows about the status is very vulnerable, they cannot safely come into contact with any partner. Even if it is a conscious decision of the partner. And the use of a condom does not affect it. Even if the contact was protected, according to the law, the person is still guilty. And the punishment is significant — people are sentenced to real terms.
Finding out about your diagnosis alone is stressful. There is a reorganization of life, a constant intake of pills. It's become a little better now. Previously, the pills were taken twice a day strictly by the hour depending on the meal, it forced to build a life taking into account the need for drugs. Now there are drugs that are taken once a day. In the United States and Europe, a new form of drug will soon be on the market in the form of injections once a month.
But still, an incurable disease that leads to practical difficulties and has such stigma in society reduces the quality of life. Like any chronic disease, it requires constant monitoring.
Prevention is impossible without the frank conversation about the ways of protection during sexual contact. It's the recognition that people can have more than one partner at a time. Like it or not, this is reality. These things need to be recognized to solve the HIV problem
What kind of educational work on HIV is being conducted today?
We obviously don't have any sex education in schools. That doesn't mean you have to teach people how to have sex. On the contrary, you can teach how not to do it, how to refuse, how not to be in a situation where you are forced. Such programmes can be. We are forced to acknowledge the existence of sexual relations in adolescence. According to my information, in schools in countries where such education programs exist, the age of sexual debut is higher and the number of early pregnancies is lower than where this topic is not discussed with adolescents. But such education, of course, is an exquisite work, which requires great attention and patience, sensitive approach.