Oppose this are those who have experienced the brunt of stigma, but not afraid. One of such personalities is the founder of a nonprofit charitable Fund of Svetlana Izambaeva. In 2005 a student of the agricultural Academy from Cheboksary became the winner of the beauty contest “Miss positive”, openly declaring their status. Faced with incomprehension and even hostility, but did not give up. And since it helps the most vulnerable – children and adolescents with HIV. About this difficult work of Svetlana Izambaeva said “RG”.
Svetlana, you patronize mostly children and adolescents with HIV infection. Tell us how many of them are now in the country?
Svetlana Izambaeva: According to the Federal “AIDS center”, today in the country 11 thousand children, born from HIV-positive mothers and already diagnosed “HIV-infection” for the entire period of observation. Of 4037 children, which this year gave birth to HIV-positive mothers, the diagnosis was confirmed in 27. There are more children who were infected long ago, but not tested, so just 4 months of 2020 in the country has increased to 176 children with a confirmed diagnosis.
As contracted these children? Because the correct use of antiretroviral therapy eliminates infection of the newborn from the mother. It turns out that these mothers did not seek medical help?
Svetlana Izambaeva: these children Have different stories. There are antisocial mothers who do not seek help, but that’s only one category. There is absolutely wealthy, successful women, but they later found out about their status. All pregnant women take the analysis for HIV infection, but it can also occur in the “window period” when the virus has yet to be determined.
there Are situations that the family split up, the child remained with the mother, but her husband never told that he is HIV positive. And the woman have never before been tested. This year 16-year-old boy from Kazan just now found out that it almost from birth infected.
You watch over the children only in your region or throughout the country?
Svetlana Izambaeva: at Tatarstan we all his children know. But as I often write, talk about our Foundation, I started to apply everywhere, and we began to consult specialists from other regions for work with HIV-positive children and their parents. Over the past few years there have been four of the rally for HIV-positive children, their parents and professionals. One of them was held in St.-Petersburg it was held in conjunction with the head of the Federal centre for the prevention and treatment of HIV infection in pregnant women and children Evgeny Voronin.
Thanks to people like you, who have openly declared their status in society, attitudes towards HIV-positive is changing for the better. There is no longer such St��Aha, as in the early years. But the problems faced by these children and adolescents?
Svetlana Izambaeva: Yes, the attitude is changing. But changes mainly in big cities and among those people who are well read and informed. But I’m working in villages, in small towns, where many infected adolescents. There is, unfortunately, the picture is different. Even in families this is often a topic of taboo, fear remains. For example, HIV-positive children live in families in which the mother with HIV and her new husband knows nothing about it. Children hide because they are afraid that their peers will reject them. It often happens that a teenager because of this, not even taking the necessary medication. There are situations when teachers talk to children about AIDS, but doing it wrong, talking about people contemptuously. When the children get older and if they go in groups, they have more internal forces, sometimes they tell their family, friends, and then it becomes a little easier. Even their parents often don’t know what they told someone about their problem.
And if people still learn – in school, in sports clubs?
Svetlana Izambaeva: Then there are problems. For example, we have an orphanage, and I was a child, asked that his because of a diagnosis do not allow to swimming lessons. In one of the districts of Tatarstan the girl was no longer allowed in the volleyball section. My husband and I have encountered this: two years ago, we got kicked out of school capoeira, learning about the diagnosis.
How such situations affect adolescents?
Svetlana Izambaeva: at First there is fear because I want to be like everyone else, but I can’t. Then the anger that you need some way within yourself to survive.
you Recently the Fund conducted an extensive study on the lives of these children. Something you found new? Or did you see results?
Svetlana Izambaeva: I am very glad that we carried out such a study. After all, when speaking to decision-makers, it is very important to rely on objective data. And I always relied only on what is said by the teenagers. And now there is research data. I can say that the hypotheses that I built, basically confirmed. One of them: for HIV-positive parents and children have high probability to face the negligence and indifference of the medical staff. The second problem: our children are equal to children with disabilities, but do not have the so-called “pink certificate”, which confirms their right to privileges for the disabled. For example, a preferential trip to summer camp, where they go at their own expense. Confirmed the assumption that teenagers often refuse treatment because they do not understand the importance of antiretroviral therapy (artW). At conventions we are working with this problem through a game situation is very simple and accessible language explain to them how these medications what they are doing. We play a research game: they are young scientists who can develop new pill. So they begin to understand what could happen to them if they miss even a single medication.
in children from 10-12 years formed an urgent need to communicate with their peers, not just adults. But many guys just because, and hiding the status that don’t want to lose communication with their peers. How do you solve this problem?
Svetlana Izambaeva: , Our support team has been working for a long time. When teenagers our eyes have grown, some have a desire someone to share of friends, and most of the time their peers took. We have organized an open group, when he is a teenager with HIV infection leads to class your boyfriend or girlfriend, we talk, we go to play basketball or volleyball. I saw how this pleased the boys, when a friend knows about their diagnosis and it normally belongs.
Many guys are taking antiretroviral drugs. How they adhere to treatment, do not welcome?
Svetlana Izambaeva: a Child born of HIV positive mothers in the first month of always taking medications as prevention. And if he confirms the diagnosis, he was prescribed more intensive therapy in the form of syrup. When the child grows, year 3 or later is able to swallow pills, he begins to take them – three different kinds every morning and evening. Know what the dream in adolescents with HIV infection? Spend the night at a friend’s. All the kids love it, but ours can’t because of the pill, a lot of them, it may someone to see and, as they say, “to kindle”. Sometimes they even say: I can’t go to a friend’s birthday, suddenly there you will see that the pill? We, adults, think he could have hid it, took it so that nobody saw. But they still do not know how to deceive.
as far As I know, it is now possible to take only one tablet a day. Why don’t they accept it?
Svetlana Izambaeva: Indeed, the drug is there, but, first, the reception is only possible from the age of 12. And secondly, we have many people started to take it, and then it happened that the guys missed, not taken on time. And if you miss a dose, it develops drug resistance. Hopefully in the future the state will pay more attention to the convenience of receiving drug therapy that our children were available for the most innovative treatment.
You are one of the first in the country to disclose her HIV-positive status. How then did other people react and how to relate to you now?
Svetlana Izambaeva: I am an open person, but for me it was difficult, a big step. Inner strength comes only through the support of other people. And my position has been formed, thanks to a lot of people. And for teenagers all the more important support and the support of loved ones. But if the family don’t talk about it, not discuss this important topic, the teenager will be closed, closed. Children interested in how they would react in future partner or fiancee how to build personal relationships? And their families this issue is concerned. One of our girls told everything to my boyfriend, he took it, said it would be around forever, and it becomes a great joy and support. For many this information is a reference: means that I can take, and it’s not so bad. Otherwise, the adolescent may be closed, isolated, because adolescence very difficult.
there were such cases when, based on your example or the example of such people as you, some of the teenagers opened their status publicly?
Svetlana Izambaeva: they look up To adults, not so significant. There is a guy from Yekaterinburg, which opened its status. He came to our meeting in Sochi. And it was obvious that he was ready calmly to talk about it. It was his choice, we in any case do not require or suggest that HIV-positive disclose their diagnosis, because it is a decision for each internal only. Our main goal is to simplify the degree of stigma, discrimination, which still, unfortunately, exist. And to do everything possible to at least in the family, among friends and acquaintances, guys could easily and freely talk about their problem.
