When an ordinary patient of the AIDS center learns about his status, denial is a normal reaction, the first stage of acceptance, psychologists say. But to cross over it is often prevented by information that huge quantities spread by HIV dissidents who do not recognize the very existence of the virus. The most common arguments in this case are that no one isolated HIV, no one saw it, and antiretroviral therapy is part of a monstrous global conspiracy of corporations against ordinary people.

How long can you live without treatment and what is the cost of denial - in the stories of HIV-positive people who refused to take therapy for many years.

Two articles on atypical cases of pneumocystis pneumonia and Kaposi's sarcoma in homosexual men were published in 1981. Then the term GRIDS (Gay related immunodeficiency syndrome) was proposed to designate a new disease, a year later it was renamed AIDS. In 1983, a report appeared in the journal Science about the discovery of a new virus - HIV and its connection with AIDS. The American psychoanalyst Kasper Schmidt was one of the first to publicly doubt that the hypothesis of scientists has a scientific basis, and in 1994 he published a well-known critical article, where he argued that the immunodeficiency virus is nothing more than inventions of scientists, and AIDS is a product of epidemic hysteria. Ten years later, Schmidt died of AIDS.

As of August 1, 2016, Samara region 62,542 HIV-positive people were registered, of which slightly more than half of the patients are available for observation. Many refuse to take therapy, do not pass the necessary tests and disappear from the field of view of doctors immediately after the diagnosis. They may go years without going to an AIDS center, ignore their medications, tell others that HIV is a great hoax, or pretend that nothing is happening to them. But in everyone's life there comes a moment when it becomes impossible to ignore the virus.

~

Anna

Anna is thirty years old, she has been living in Moscow for the last three years. Before that, she spent her whole life in Samara. I learned about the diagnosis in 2005: “I probably got infected through sex.” After that, she did not take therapy for six years, and did not take tests at the AIDS center for the same amount of time.

“When I found out about the diagnosis, it felt like I was hit on the head. I left the office, but there was no strength, complete emptiness, as if everything was taken away from you in one second. Doctors then seemed to be talking about therapy, but in such a way that they did not believe in treatment. I asked them: “Is there a future?” And in response: “Well, maybe in seven years you will die, or maybe in twenty.” And in my head one question: “Why me?”.

I can't call myself an ardent dissident. Rather, I just wanted to delay the start of therapy as much as possible. I associated pills with tying hands and feet - you depend on the schedule of admission, you have to take a bunch of drugs per day. I thought I couldn't make it. The fact of life just killed, it's like a habit that can not be abandoned. And then I just decided to convince myself that nothing bad would happen to me, that I could continue to live the way I lived before the diagnosis. At that time, I was generally afraid of little in life, I also just went to work as a flight attendant - this is a huge burden on the body.

In 2011, I developed an acute form of herpes, half of my face swelled up. Terrible. Called to ambulance, but they refused to hospitalize me - they didn’t believe that everything could be so bad with herpes, but they couldn’t see me on the phone. As a result, I ended up in Pirogovka, I lay there for a long time. True, it was not possible to completely recover from herpes, the optic nerve atrophied, and I became blind in one eye. The consequences are irreversible. After that, I began to be afraid of everything, there was a feeling that all my strength had dried up. That’s when I decided it was time to start taking therapy… If I had started doing it right away, maybe things would have turned out differently.”

Anna does not have a Moscow residence permit, and she is not registered with the local AIDS center. I have to get pills in different ways: draw up powers of attorney for friends, who then send the medicines by mail. Anna says that she has been living with HIV for so long that she no longer knows how she would feel without it.


Elena Lenova,psychologist, consultant for working with HIV-positive people:

“When a person is faced with an incurable disease, one of the stages of acceptance is denial. It is difficult for him to believe that this could happen to him, and he can grasp, like a straw, for any opportunity not to recognize the obvious. And most often, at such an initial stage, patients come across dissident articles that convince a person that he cannot have any HIV, that these are all scams and hoaxes. It is all the more difficult to believe that you are sick when you feel normal at first. The saddest thing is to find out that this dissident has died or that a child with HIV was born to parents who denied treatment. I think the main reasons for this whole situation are the poor awareness of people about the virus, the banal desire to deny the obvious and distrust of doctors.

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Alexander

Alexander, 37, lives in Samara and works as a driver at a factory. I learned about the diagnosis in 2001. He got infected, like most in those days, through a needle.

“Immediately after I found out the diagnosis, I went and got drunk. At the appointment, the doctor said something about therapy, but I did not listen to him then. Then I did not go to hospitals for ten years. He quit drugs due to problems with the law, but continued to drink. All this time I felt normal and without therapy. I read HIV-dissident books, I liked that there were convincing arguments, for example, that no one had seen the virus. I didn’t think about the consequences then, and in general I didn’t think about anything because of alcohol.

I took therapy for about two years. Then he quit because he started drinking again. I thought: what's the point of taking medicine and pouring vodka on them?

Once, in the middle of summer, my temperature rose to forty and did not subside. I knocked her down for a couple of hours, she rose again, and so for a whole week. I didn’t want to until the very end, but I realized that I had to go to the AIDS center, because there were no other symptoms except for the temperature. Doctors found out that I have a low immune status, only 9 CD 4 cells ( the number of these cells indicates how much HIV has hit the immune system, treatment is started when the patient has less than 350 CD 4 cells - approx. ed.). In fact, they pulled me out of the other world, prescribed therapy - about seven tablets a day. Two months later I already had 45 cells, little by little there were more and more of them. I took therapy for about two years. Then he quit because he started drinking again. I thought: what's the point of taking medicine and pouring vodka on them?


During the same period I got married. My wife also has a “plus”, and she also did not take therapy. It turned out that the refusal of treatment is a personal matter for everyone. And then she was sharply knocked down - problems with the kidneys. The disease had to be treated with hormones, and hormones greatly reduce immunity. Vicious circle. The doctors did what they could, but it was too late.”

For the last week of her life, Alexander's wife was connected to a life support machine. When Alexander finally realized that there was nothing to fix, he again went into a binge. Then I decided that I needed to get out of it. On the fifth day of sobriety, the wife died. Alexander has since taken therapy again. He says that this time he will give up the pills only if he firmly decides to die.

Guzel Sadykova , Head of the Department of Epidemiology of the Samara AIDS Center:

— HIV dissidents mostly find information on the Internet. For example, there is a popular myth that no one has seen the virus. It was written once in an unknown year, although much has changed since then. When you talk to such patients about what scientists have already received Nobel Prize for isolating the virus, it sounds like incredible news to them. According to our observations, most often women refuse to take drugs, often pregnant women. It may be harder for women to accept the fact that they have HIV and that they can pass it on to their baby. In the case of refusal of treatment, we work specifically with patients, not with the HIV dissident movement as a whole. Some “deniers” can be persuaded, but some of them, unfortunately, die, including the children of parents who do not believe in the existence of the virus.

~

Anton

Anton is no more. A few years ago, he moved to Krasnodar, his native Samara left friends, and in Tolyatti - a little daughter, who was born from a former drug addict wife. He himself also took drugs, which is why he contracted HIV about ten years ago.

In the south, Anton met Maria, also with a positive status. For about a year they lived in perfect harmony, made simple plans: to live by the sea, and always warm, and always together. Anton sometimes went to HIV+ self-help groups, but he called himself a dissident and stubbornly refused to be treated.

A year ago, his immunity was greatly reduced, and the temperature rose every now and then. Doctors insisted that it is necessary to start therapy and treat tuberculosis, which developed against the background of HIV infection. But Anton did not believe them and continued to say that he would not go to the AIDS center any more: “They are saying with all their voices:“ Treat tuberculosis, treat tuberculosis. And I don't have it!" Then - severe headaches, vomiting began even from a sip of water. Maria persuaded Anton to go to the infectious diseases clinic, but he did not want to. As a result, I had to call an ambulance and almost by force take him to the hospital.

Doctors put Anton in the infectious diseases department with suspicion of sepsis and cerebral edema. Then it turned out that he had tuberculous meningitis. He lived after that for a very short time, no longer getting out of bed, then fell into a coma. On July 26 of this year, Anton's brain died. The heart continued to beat for some time.


Text: Anna Skorodumova/Illustrations: Daria Volkova

"Peer Consultants" GBUZ "Regional Clinical Hospital No. 2, Center for the Prevention and Control of AIDS and infectious diseases– Ksenia (32 years old) and Angela (37 years old) shared their stories of living with HIV. According to the heroines of the material, this diagnosis should not be feared. After all, you can live with it.

– Under what circumstances did you find out that you are a carrier of HIV infection? What was your first reaction?

Ksenia:- I first learned about my diagnosis in the hospital, where I applied with a purulent-inflammatory skin disease. The problem bothered me for a long time, but at a certain point it began to progress strongly, and I was afraid of blood poisoning. I passed the tests, and when the first results came, I realized from the reaction of the doctors that something was wrong. Then, in the 1990s, no one spoke openly about HIV at all, and there was no therapy for this disease as such. And the doctor told me about my diagnosis directly, without introductory words. There was a brief shock, a misunderstanding of what was happening. Deep down, I knew that this could happen to me - I used drugs, then there was a break when I became pregnant and gave birth to a child. Then, after a while, I again went into all serious trouble. And you see, all the time I thought that I would “tear”, that I was not a drug addict, that just a little more, and I would definitely quit. And when she found out that she was sick, the world collapsed. And this hopelessness lasted for several years. Church and turning to God became a turning point in my life. Only after that, awareness began to come, a new, different understanding of life appeared.

Society is still poorly informed about HIV. Many people still think that you can get infected by shaking hands or talking.

Angela:- And I have always been a representative of the so-called "golden youth." When heroin appeared in our city, it was not even considered something terrible. So, harmless entertainment, fashion. It was this permissiveness that ruined me. In my fifth year of law school, I drop out and go into nirvana. Periodically, I have forced periods of sobriety in which I try to return to a normal life. It was during one of these periods that I underwent a preventive examination, where I found out that I had HIV. If before that I had any hope for better life, and now I have taken that away. I did not want to live, for a long time I tried to forget myself in drug addiction- everyone thought that it would be possible to quickly and quietly leave this world with the help of drugs. But it was impossible to leave. Moreover, I kept expecting that I would be terribly sick, tormented. How different, because I have HIV! And nothing like that happened, the diagnosis was, but there were no manifestations of the disease. I began to think, slowly come to my senses. By force of will, I gave up drugs. I refused for a long time, but I managed. And I began to think about how to live on.

Who did you tell about what happened?

Ksenia:- Mom. I told my mom right away. We have always had a trusting relationship with her. Mom supported, reassured, said that we would live on. Although, of course, she was always very worried about me - and when I started using drugs (I am from a decent family, none of my relatives could even think that I, once an excellent student, athlete, activist, could become addicted to dangerous chemistry), and when I learned about the diagnosis. Until now, except for her and the doctor I see, no one knows about it. Neither the daughter, who is already 10 years old, nor the sister, nor the brother. Nobody. Our society is not yet ready for such revelations, and I do not want to put psychological experiments on myself or on my child. For what? I have enough warmth and support from my mother, and then I am a believer. Thanks to God, I gave up drugs, changed the point of support from transient material things to really important values ​​in the life of every person - family, relatives, close relationships. Everything changed. Thanks to God I found a good one interesting work which brings me pleasure. God willing, and I will meet a person with whom I can again start a family, and yes, I will be ready to tell him about my HIV status. But to speak to other, strangers - I think it is not necessary.

Angela:- I also shared with my mother in the first place. For a long time, except for my mother, no one knew about it. The next of the close people to whom I opened up was at that time my future husband. To date, my husband and I have been together for about 13 years, I still remember my feelings about this. I was very worried about our relationship, I did not know how he would react. I was afraid to lose him. She kept coming up with some phrases, picking up, as it seemed to me, some special, filled with deep meaning words to tell him the truth. And when she nevertheless decided to start a conversation, tears poured down in hail. But, to my surprise, he took this "news" calmly. He said that I was a fool, and he was not going to leave me anywhere. And in terms of work – here I agree with Ksenia, the society is still little informed about HIV. Many people still think that you can get infected by shaking hands or talking.

- If we talk directly about therapy - how easily does it fit into your lifestyle?

Ksenia:- There are no particular inconveniences in connection with this. At first there was a transitional period, so to speak, physiological adaptation to antiretroviral therapy. But these are all purely individual sensations, over time (quickly enough) the body adjusted to the drug regimen. And so - 2 tablets in the morning, 3 tablets in the evening. At the same time. At first I set an alarm clock, since you can’t miss it, now everything has come to automatism. No, it's not difficult, that's for sure. Probably, many will be interested in how an HIV-infected person physically feels. I answer: just like a healthy person. Only because of my HIV status I am obliged to monitor my condition twice as closely as a person with a healthy immune system.

Angela:– ARV therapy helped me give birth to a healthy child 8 years ago. My son's parameters are normal, he is completely healthy. But I strictly followed and continue to follow all the recommendations of the doctor. My only regret is that at the time when I was diagnosed with HIV, there was no such approach to controlling this disease. Of course, now this is much easier: drugs are issued by the state for budgetary basis Therefore, we can say that there are all conditions for a quality life. What I want to note: therapy does not prevent me from being realized either as a mother, or as a wife, or as a member of society. And this is the main thing.

- What are the main words you consider it necessary to say to those people who have just learned about this diagnosis?

Ksenia:“I think we need to give ourselves time to accept this reality. Whatever we say now, when a person finds out that he is sick, it is always a colossal stress. But stress will pass sooner or later, and you will need to make specific decisions and take specific steps. You need to think and act with a cool head. You should not hesitate to seek advice from experienced people living with HIV, you should listen to an infectious disease specialist, be sure to be examined and adhere to the prescribed therapy. And what is important - treatment should be started as early as possible.

Angela: Nobody is immune from this disease. First you learn to live without drugs, then you learn to live with HIV, and then there comes a stage when you realize that the issue is not HIV, the issue is yourself. How do you see your life? What are your goals, what are your dreams? What do you want to achieve in the end? HIV is very sobering, it helps to realize many really important things. I stopped wasting time senselessly, began to work on myself, to change - and life acquired a new meaning. Therefore, everything is possible. And this “everything” depends on us directly.

HIV: THE STORY OF ONE INFECTION

Everyone knows that HIV infection is quite common, but for many this information remains abstract, having nothing to do with them. Today we will tell the story of one girl who suddenly found herself “on the other side of the barricades” - she found out that she was HIV-infected, and this diagnosis changed a lot in her life.

According to UNAIDS (the United Nations program to study and combat HIV / AIDS), in 2013 there were about 35 million HIV patients in the world, during the same year another 2 million people were added to their number.

Of course, everyone understands that this is a serious problem, but gradually the topic of HIV has grown big amount myths and prejudices - therefore, many people think that infection threatens only those who lead an immoral lifestyle. In fact, the stories of infection are different, as well as the attitude of doctors towards patients with HIV.

Olga:I found out about my diagnosis by accident - Kamil Rafaelevich Bakhtiyarov was supposed to operate on me, before that they always take standard tests, when the results came in, it turned out that I had HIV. When Kamil Rafaelievich announced this diagnosis, I left him with the feeling that I was dying, it seemed that I would not get home - I would die on the way. Later, I remembered that the results of the HIV test had not been available for a long time, but this did not alert me. I led an absolutely normal life, I had one man, I did not inject, so I had no idea that I could be a carrier of HIV infection.

Then I thought about how the infection could have happened, the only suggestion was during an urgent operation, which I somehow did abroad, when I had an acute attack of appendicitis.

They didn’t take any tests from me, and I wasn’t interested in how well the instruments were processed - I had no time for that, I had a high temperature, I lost consciousness ... And after the operation I felt good, except that I started to get sick more often, but I and so it was always not the best immunity, so I did not pay attention to it special attention. By the way, most of the girls I know with HIV also found out about their diagnosis before surgery or during pregnancy, and they got infected, in most cases, from their men, who had no idea that they were sick. In general, the virus can be in the body, but not manifest itself for a very long time, you can live with HIV for 10 years and not guess anything.

What is HIV

HIV - virus human immunodeficiency, affects the cells of the immune system, as a result, it ceases to cope with its functions, and the body's defense against infections is weakened .

AIDS (acquired immune deficiency syndrome) gradually develops - at this stage, secondary diseases occur, normally immune cells prevent their appearance, but in the presence of HIV, the body is no longer able to resist. The immunodeficiency virus belongs to the so-called slow viruses (lentiviruses), that is, they have a long incubation period. It is portrayed as similar to a depth charge used against submarines. Glycoprotein "mushrooms" are located on the surface of HIV - with their help, the virus "hacks" the cells of the body, integrates into them and begins to multiply. The device of HIV is quite primitive, however, it successfully penetrates into more complex cells and uses them for its own purposes. HIV uses some types of immune cells for reproduction, others as a reservoir, in which the virus can be stored in an inactive state for a long time, in which case it is invulnerable to antiviral drugs - this is one of the problems in fighting the disease, and the virus is constantly changing.

Today, most research is aimed at developing drugs that block the virus at the stage of invasion into the cell - this direction is considered the most promising.

Olga:Many hide their diagnosis because people do not know what HIV is, they think that they can get infected just during communication. I didn't know it myself until it happened to me personally. Also, many doctors react inadequately. For example, a girl I know with HIV told me how she gave birth in Ryazan region. She found out about her diagnosis when she was already pregnant, when the time came to give birth, she turned to the place of residence, she was admitted, but through the back door, the doctors looked more like astronauts - in airtight suits, their faces were covered with masks. She was placed in some special, separate box ... In general, there was a feeling that she did not have a human immunodeficiency virus, but, for example, the plague. That is, some terrible disease transmitted by airborne droplets. In fact, this, of course, is not the case, and competent doctors know that HIV is transmitted only through blood or through secretions. There is, of course, the expression “plague of the twentieth century”, but it is figurative, it describes the prevalence of HIV, and not that you can get infected by touching a person. But, unfortunately, some doctors behave as if this is the plague in the truest sense.

How HIV is transmitted

There are many myths about human immunodeficiency virus infection. In fact, most of them have nothing to do with reality. HIV can be transmitted through unprotected sexual contact (vaginal or anal), oral sex with a carrier of the virus; when transfusing blood containing HIV; when using contaminated instruments (needles, syringes, scalpels and others). The virus can also be transmitted from mother to child during pregnancy, childbirth and breastfeeding.

Olga:Most of my acquaintances with HIV are afraid to go to the doctors in the clinic, because most often the reaction is inadequate. And private clinics, having learned about the diagnosis, begin to inflate prices. In addition, many doctors are afraid to accept such patients, as it is believed that they need some kind of special conditions. But, in fact, it is enough just to carefully follow the standard sterilization rules. This was not the case with Kamil Rafaelievich, he operated on me, as we planned. True, this happened about six months after I found out about my diagnosis. I needed this time to adapt and understand that I need to live on. Moreover, it was necessary not only for me to get used to it, but also for my family, because it is also hard for them, everyone to whom I dared to tell, they are worried along with me - parents, husband ...

In fact, this is very scary, but if you are already faced with this, you should not despair, you need to pull yourself together and go to therapy. The first stage of taking the drugs was very difficult for me, the body rejected them, I was constantly sick ... But then it got better, now I take therapy, lead a normal life, work, I have hobbies, I can have children ...

Features of surgery for HIV patients

Kamil Bakhtiyarov: Women with HIV infection are patients just like everyone else. I see no reason why they could be denied surgery, the doctor's task is to do everything possible to cure patients, regardless of whether they have any viruses in their blood or not. It is strange even to discuss this, and even more surprising that some doctors refuse to operate on HIV patients or treat them with fear. Naturally, during such operations, certain rules must be observed: the doctor must put on two pairs of gloves on his hands (special chain mail gloves that protect against cuts and punctures, and ordinary rubber gloves), on his face - two medical masks and goggles. In addition, today many operations are performed endoscopically (that is, through a small incision, using optical instrument), in which case there is practically no chance of infection at all.

Olga Kuzmicheva, 36 years old

I was 20 years old, at the eighth month of pregnancy I came to the antenatal clinic. I passed the tests, I come for the results, and they ask me to retake blood in the immunological clinic. Passed and forgot. After 10 days I went for the results. They told me that I had HIV and offered an artificial birth. I got hysterical, at that moment I did not understand anything at all. I began to stutter, I say: “What kind of artificial birth? You understand, I have a stroller, sliders, diapers at home. They told me: “Who will you give birth to? Either an animal or a frog. Sign!" I refused. It seemed to me that life was over.

As there was an infection, has recollected not at once. I used to do drugs intravenously. Started because of my husband. Because of my character and some kind of youthful maximalism, I decided to save him - to prove that you can quit. That's how stupidly I got involved. Then there was a rehabilitation center, a year of sobriety. But there was a breakdown: at the birthday party of a friend, we drank. Her husband offered to inject, and then I didn’t really control where whose syringe was. Then I still managed to quit, later I found out that I was pregnant.

I was taken to the second infectious diseases hospital for childbirth (the usual maternity hospital did not accept me). There was a section for HIV-positive people, drug addicts were all around. A doctor from the maternity hospital was called for me. He was wearing glasses and a red oilcloth. When he cut the umbilical cord, blood spurted out. And he yelled like crazy: "If I get infected, I'll get you out of the ground."

Then the child and I were transferred to a solitary ward. Autumn, it's raining, howling dogs, bars on the windows, through the door - drug addicts inject. I took the child, put it on my chest and swayed all the way on the chain-link net.

I did not hide the diagnosis from my relatives. The husband supported, said: "Well, we will live as we lived." The mother-in-law was shocked and at first even tried to give me a separate washcloth, soap and shampoo. My mother said to the last that this is all nonsense, a deception of the state in order to extort money. Best friend ignored it.

I could no longer work as an educator, and I had to work as a sales assistant in a store. When they asked me to do a medical book, I changed jobs. Of course, they did not have the right to fire me because of my HIV status, but this still needs to be proven. I knew what was what - they would condemn, evaluate, eat, crush.

For five years I lived in isolation with the understanding that I was an outcast. She went into a closed world - my girlfriend, husband and children. I lived with one thought: “I will die, I will die, I will die soon. I won’t see how my son goes to school, I won’t see this and that.” And at some point I arrived at the special center and realized that all these people were also HIV-positive. Even then, my mother-in-law was very supportive. Despite her first reaction, she still wise woman I realized that I needed to change my attitude somehow. I began to read some books about HIV, and then slip them to me, saying: "Ol, let's get out of this state."

I began to find out what HIV infection is, and soon I was lucky and I found a job at a helpline for HIV positive people. Over time, I began to invent booklets, brochures. I was once asked to write a script for documentary film about the infection. I came home, laid out the sheets, thought for a long time how to approach. Everything turned into a letter to my mother. There was confession and repentance.

The director invited me to star in the film. I filmed and openly declared that I was HIV-positive. I don't regret it one bit. Of course, my family dissuaded me. But for me it was a turning point, I realized that I don’t want to be isolated anymore, I want to talk about it. The film received various awards, I was even awarded by Posner. But for me, the highest reward was the realization that my story helps someone.

My second husband was also HIV negative. When we met, I had already announced my status, so he calmly accepted it. It was absolutely happy marriage. I gave birth to my second son. Unfortunately, when he was only one and a half years old, her husband died. And I went to work. It was after his death that she began to actively engage in charity work. By that time, I had already organized my STEP Foundation. I opened a self-help group for HIV-positive people, began to travel around prisons and talk about HIV, conduct trainings, and came to rehabilitation centers, then opened her own, began to hold promotions.

Now attitudes towards HIV-positive people are gradually changing. The second time, five years ago, I gave birth in an ordinary maternity hospital, in an ordinary ward, and they treated me awesomely. I heard a lot of kind and warm words addressed to me.

I still run into some prejudices though. Several times they refused to operate on me, I had to be reminded of my rights. Unfortunately, doctors are often even more ignorant in this matter than patients. They shy away, get scared, send them to a special center.

Of course, they don’t give me a separate spoon. Although, maybe I don't notice. They stopped hurting me a long time ago, I have a specific answer to all questions, I can safely laugh it off. But when meeting men, it's still not easy for me. I often don't know how to talk about my status, sometimes there is this feeling of embarrassment, so either I speak or I leave. I am not very pleased with the questions, but I try to understand that a person is simply responsible for health.

The eldest son knows about my status. When I was prescribed therapy, he asked why I was taking these pills. I had to say that I swallowed Tamagotchi and now I will have to feed her pills. The son even ran for some time afterwards and shouted: “Mom, did you take the pills?”

Now he is already 15 years old, he understands everything, only once again he asks: “I saw you on TV, what is your action there again?” The youngest son is 5 years old, this year he participated with me in the All-Russian testing campaign.

“I didn’t have any thoughts of committing suicide”

Ekaterina L., 28 years old

I have two children, I love to read, I live in a village in Sverdlovsk region. It's been a year since I found out about my status. A pregnant woman came to the antenatal clinic, and they told me there. Of course, there was a shock, I was no longer afraid for myself, but for the child. Because I understood that people live with it and live for a long time. They talk about it on the Internet and on TV. And there were no thoughts of going to commit suicide.

In the antenatal clinic they reacted normally. True, in the maternity hospital both the doctor and the obstetrician treated me terribly. Like garbage. Can't be put into words. They were even afraid to touch me, as if I were a leper or contagious. Nothing helped. They were rude and asked how she got infected. She gave birth in a separate room, and then was transferred to a regular ward. Fortunately, my diagnosis was not disclosed, and I myself did not tell my neighbors.

I don't know how the infection happened. Couldn't get infected sexually. My partner was healthy, he was tested, I do not take drugs. Then I read a lot of literature, it turns out that you can get infected in a nail salon, and at a dentist, in almost any medical office where there are tools. I don’t go for a manicure, but I visited both the dentist and the gynecologist for Lately. Now there is an epidemic, in our village six hundred people have been infected in six months.

During pregnancy, it was not easy: every three months I had to go to take tests from our village to the city. The therapy was very difficult to tolerate at first. Everything seems to be fine with the baby. The pediatrician treated us like a human being. The baby also had to be taken to the city for tests, to a special center - a month, three months, and then another year.

When I found out that I had HIV, there was no one around, I shared with best friend. Only then did she cease to be a friend, although she is the godmother of my child, and I am hers. At one point, something clicked in her, and I became the most a bad person. No one knows why she got so mad at me.

First, she began to write to my relatives that I had HIV and children should be taken away. Then she told everyone in the village about my diagnosis. I wrote on Vkontakte in the group of our village, and also the neighboring one - when I found a job there in a store.

I don’t know how I would explain myself to everyone, but the case helped me. I wanted to double-check the diagnosis and donated blood in a private clinic. The result came, and it says: "The analysis is delayed, the reaction is negative." I showed this certificate to the owner of the store, she calmed down. She also wrote a statement against her ex-girlfriend to the prosecutor's office for disclosure. Now the check is being carried out.

I am still taking therapy, but on occasion I will ask at the special center what such an analysis means. When my status became known, many climbed into the soul, asked: “What? But as? Do you know what they write about you? I said: “I know, I have a certificate that I am healthy.” Questions disappeared by themselves. More negativity was addressed to me ex girlfriend. Now everyone is sure that this is her invention - she just decided to ruin my life.

I feel like a perfectly healthy person. Sometimes the liver hurts, therapy affects. I then drink pills for the liver. Medicines for therapy are given to us free of charge for three months in a special center. There have been no drug interruptions so far.

Now I'm afraid to communicate with the opposite sex. I can't start any relationship. I somehow feel uncomfortable. After all, you have to say, but you don’t want to talk. This is what stops. Therefore, psychologically, it is easier for me not to communicate with men. And now I trust people less. True, I didn’t really trust before, but now even less.

“I met love and am happy with my man”

Olga Eremeeva, 46 years old

I am a life insurance financial advisor. I never thought that I could get infected: led healthy lifestyle life, underwent a medical examination, and with a former common-law husband, we passed tests at the beginning of the relationship in order to be sure of each other.

In 2015, her husband was hospitalized with a head injury. After the operation, the doctors promised to discharge him soon, but three weeks later they transferred him to the infectious diseases hospital and said that he had one week left to live, because he had AIDS. So I understood what his strange behavior was connected with: the whole Last year we did not live with him, he began to drink, then disappeared, although he sometimes left packages with groceries and notes under the door of the apartment.

But even then I didn’t think that I also had HIV. You never know, maybe he got infected while we weren't living together. Just in case, I still passed the analysis in the antenatal clinic. Three weeks later, the doctor called me and asked me to come in. That's how I found out about my diagnosis. I thought I would die in a month. She stayed at work, and when she was alone, she cried.

There was no panic, but there was a sense of hopelessness. I even thought, maybe, to sell everything, to go somewhere, to take a last walk. But we live in Russia, we do not have such pension savings, not everything is so easy.

I suspect that my man at some point found out about the disease, but was afraid to tell me. Then he even told me that he had some kind of blood disease, but for some reason I thought it was oncology. It seems to me that he, too, could not have guessed that he was ill, and found out too late.

When we met, he was the director of a construction company, a businesslike, worthy man. I think he could only get infected because of the tattoo - he just did it at the beginning of our relationship. I didn’t have any resentment against him, I was annoyed: why didn’t you say, it was possible to deal with everything together.

My daughter gave me great support, although she already lived separately with her boyfriend. I never really hid my HIV status, but I never talked about it to everyone in a row. I didn’t tell my colleagues, I didn’t want them to be nervous, worried.

When I carefully asked a colleague if there were no payments for HIV insurance, she told me: “What are you talking about, this is such a mess!” But then, when everyone guessed, she did not change her attitude towards me, she did not even offend me with a hint.

When you share your diagnosis with someone, and they don’t turn away from you, this is the best support.

After a conversation with an excellent epidemiologist, who is more of a psychologist, I realized what my mistake was. It turns out that no medical examinations take blood for HIV without our permission according to the law, and even more so if an operation is not required, if they see that you are a socially well-off person. Therefore, I did not know about my diagnosis for almost 6 years. Although we were tested for infections with my common-law husband, it turns out that an HIV test was not included in this package.

Yes, I felt bad for a while, but if you can’t change the situation, change your attitude towards it. I am always positive, I come to people with a smile. And it's probably disarming. I bring good to people, and they do not have the opportunity to respond with something else, even if they know about my status. Much depends on ourselves. Sometimes people misunderstand, but when I open the status, I try to inform them.

After the news of the HIV epidemic in Yekaterinburg, a wave of awe swept the country. Journalists frantically called local centers to find out the statistics of their region. What if it's an epidemic too? Nobody really knows. Part of the population thinks that this is a disease of “gays” and drug addicts, but here it turns out that anyone can be at risk. But the worst thing is that some people believe that HIV does not lead to AIDS or that the disease simply does not exist, although they themselves have a positive status. They call themselves HIV dissidents.

How did HIV dissidents appear?

The first publication that said that HIV is a worldwide conspiracy came out in the summer of 1984. Psychologist Kasper Schmidt argued in his article that AIDS is a product of epidemic hysteria and has a psychosocial origin. In 1994, the psychologist will die from a disease in which he did not believe. After some researchers began to doubt that HIV and AIDS are connected. Later, scientists managed to prove this connection, but there were people who did not believe, including well-known figures in politics and art. For example, South African President Thabo Mbeki believed that sorcerers would be able to cope with diseases, but professional doctors could not.

Screenshot of correspondence in one of the groups

in the biggest Russian community There are more than 15,000 people who deny HIV on VKontakte. There are also a couple of large communities with 5-7 thousand users. Organizers raise money to promote their community, persuade doubters to quit prescribed treatment, stop going to AIDS centers and refuse to take tests. It is useless to argue with him: everyone who convinces dissidents of the existence of HIV and a direct connection with AIDS is called trolls.

Members of the group destroy not only themselves, but also their children and partners. Due to the lack of supervision, therapy and even refusal of tests, children die, and their parents continue to think that there is no HIV, blame doctors and give birth to doomed babies. Here are some vivid stories about dissidents from the group " HIV/AIDS dissidents and their children". It has about 5,000 members who try to convince the doubters, and at the same time collect statistics on the deaths of activists in the dissident community. Hero names have been changed.

Story one

"As long as I'm alive, no bitch will have a baby"

“Over the course of several months, we published a number of articles dedicated to a woman who refused to treat her HIV-infected child. Conversations and persuasion to start treatment did not have the desired effect. In this regard, we turned to a number of competent authorities with a request to contribute to solving the problem. But that didn't help either. Moreover, one of the ardent HIV-dissidents decided to help the woman in the “fight against the speed machine” and complained about us to the prosecutor's office. Apparently, he also influenced one of the deputies of the regional Duma, who also filed a complaint against us with Roskomnadzor.

I had to stomp to the above authorities to explain what the essence of the current situation is. As a result, this woman died, because she not only did not treat the child, but also did not treat herself. At the time of her death, the condition of the child left much to be desired. Whether he was treated after the death of his mother, we do not know. This morning I was at the Investigative Committee, where I again had to explain what was what. If the Investigative Committee had seen in my actions a crime, then it would most likely have been the article “Violation of the inviolability privacy". The Investigative Committee plans to make a decision not to initiate a criminal case. “As long as I’m alive, not a single bitch will have a child,” Elmira Lukina wrote in one of the dissident groups. As a result, on July 10, the woman's son died.

Story two

“Almost all alternative beliefs were mixed up in his head”

- Vladimir was an ardent adherent of HIV denial. He allowed the death of his wife from AIDS, the infection of two daughters (home birth), and the infection new sweetheart. Everything is mixed up in this story: HIV denial, home birth, children with HIV, Slavic beliefs, yoga, aggressive point of view. But first things first.

On his page on the social network, he posted materials of HIV-dissidents. He was a member of the "HIV HOIST" group. In his videos, you can find almost all alternative beliefs, whether it is HIV denial, anti-vaccination, Levashism, meat-poison, pampering on physics topics, anti-cancer soda and so on for every taste. In 2006, Vladislav and his wife had their first daughter, and two years later, their second. Both girls are infected. Their dad did not believe in the diagnosis of HIV, he threw out the tests. Wife convinced that the problem does not exist. Some time later, his wife died of AIDS. After death, the mother-in-law deprives him parental rights. In a subsequent relationship, he infected another woman who fell deeply in love with him. He died of AIDS on June 2, 2016 at the age of 44.

Story three

“We took a taxi to the cemetery together”

Inna got infected from a sexual partner. Since 2013, she has been registered at the city AIDS center with a diagnosis of “HIV infection, stage four”. She was on antiretroviral therapy as prescribed by her doctor. About a year later, a friend who knew about the diagnosis gave the phone number of the “healer”, who, in her words, treated serious illnesses for money.

- I contacted by phone, and an Azerbaijani woman named Zema promised to completely cure me of HIV infection with the help of Muslim magic. At her invitation, I came to their apartment in Krasnodar, the Gidrostroy district, in the area of ​​​​the Titan hypermarket, I myself told her about my health problems, and she promised to help me cure HIV, - Inna describes the acquaintance in a statement provided by the Equal dialogue". - Together we went by taxi to the cemetery on Lenin's farm to the grave of my mother, who died in 2011.

After that, the "healer" demanded 15 thousand from the woman. She did not have such an amount, so she went home, took all the gold jewelry she had and handed them over to a pawnshop.

- I felt unwell, and Zema said that we needed to clean the mosque, we went to the mosque. I came home to Ainur - the daughter of Zema - at her invitation. Me, Ainur and her son-in-law drove my son-in-law's car to the mosque for purification. In the mosque, I sat on my knees while Ainur prayed. On the way back in the car, Ainur told me that in order to be successful, she needed to perform an additional rite, which needed money, and I had to give it. I didn’t have enough money with me, and I gave away my iPhone 5,” Inna continues.

To verify the effectiveness of the rituals, the Krasnodar woman went to the AIDS center and passed an HIV test using her passport. The virus was still present in the blood.

- I called Zema and shared my annoyance about the positive result of the analysis. Zema appointed a new session, during which she sprinkled dry grass on my head and read conspiracies. For a session at her request, I paid 5 thousand. After the session, I was told that the doctors in the AIDS centers are lying, unreasonably diagnosing HIV infection and prescribing useless drugs, it's harmful to listen to them, I can't infect anyone with HIV, because it doesn't exist. Two weeks after that, the false healer gave a certificate of the absence of HIV, taking 3,000 rubles for this.

“Having received a certificate stating that I do not have HIV infection, I was very happy about my recovery. I thought that I was no longer sexually contagious, I believed in healing and stopped taking the medicines prescribed by doctors, taking tests at the AIDS center and going to doctors. Wherein for a long time I felt pretty good,” the woman who later died describes. - During the year, Zema called me and offered to buy pills for cheerfulness and fun, and I also received SMS messages from Zema and Ainur with offers to call, questions about health, whether I work, and requests not to be offended. I did not answer them, because I had financial difficulties.

In October 2015, the woman's condition worsened. WITH high temperature she was hospitalized in the infectious diseases hospital of Krasnodar, where she was diagnosed with hydrocephalus of the brain. March 8 next year she died.

Story four

“Her husband is still a doctor”

Once upon a time there was a girl with nice name Angelica, who, under strong pressure from her common-law husband (by the way, a practicing therapist and an ardent HIV dissident at the same time), began to deny the existence of HIV, with which she was infected. During her pregnancy, she did not get registered with the antenatal clinic, and in principle she never visited her. At the AIDS Center, she wrote refusals to prevent HIV for the fetus, and she was warned about the consequences of such refusals. gave birth at home, delivered civil husband. The child was immediately attached to the breast and then placed on breastfeeding. Preventive treatment of the child, of course, was not carried out. As soon as the AIDS Center became aware of the fact of the birth of a child, immediately the mother and the baby began to be invited for examination to rule out the fact that the child was infected with HIV.

For a long time, these invitations were ignored by the parents, they came to the AIDS center only when the baby was already 3 months old at that time, and they came without him. They behaved aggressively, again wrote refusals from any examinations, despite warnings about the criminal liability of such acts. The AIDS Center sent information about this case to various authorities and authorities, but from the side of guardianship and law enforcement no action followed.

At the age of 5 months, the child was admitted to the Children's Infectious Diseases Hospital in critical condition with a diagnosis of "Acute HIV infection, stage 2B, progression without treatment. Viral hepatitis B, lightning form. Despite all the ongoing medical measures (treatment in intensive care, peritoneal dialysis), the baby's condition gradually worsened, and treatment with antiretroviral drugs was no longer indicated, which led to the failure of all vital organs and the death of the child three weeks after admission. Parents are not responsible for this. And in the summer of 2015, Angelica herself died of AIDS (she died of lymphoma, which is a common complication of AIDS). Her common-law husband works as a doctor.

Story five

"Where's your ex?" “He died a year ago.”

Mikhail was the husband of one of the active members of the dissident community. She did not believe in the existence of the disease, although she had a positive status. What followed, read for yourself.

The case in the dissident smoking room ( spelling preserved).

-Hello, babes! Tell me, are there those who hid their HIV from the second half? And how to say? And is it worth it? Intimate was more than once. And no protection...
- Girlfriend, if you are one hundred percent sure that there is no HIV, then why speak? I've been dating a man for a year, I didn't inform him! He takes HIV tests every six months - he is negative!
— Oh, Mary, do you have a new boyfriend? Where is your ex?
So he died a year ago
— Oh, I'm sorry, I didn't know (What happened to him?
- Pneumonia (Pneumonia was found at the autopsy ... and they were treated for tuberculosis! With his status.
- With what status?
- With HIV-positive status, he was also HIV+, like me. He also had herpes zoster. But the same herpes virus causes it - with whom it does not happen.
- Clear. So how to talk about your plus? Oh, listen, Mary, have you had a plus for a long time?
- I have five years and my child too.

For those not in the know, there is an article in the Criminal Code for deliberately placing another person at risk of contracting HIV infection and is punishable by imprisonment for up to one year. Infecting another person with HIV infection by a person who knew that he had this disease is punishable by imprisonment for up to five years. Infection of two or more persons or a minor is punishable by imprisonment for up to eight years.

Myths of dissidents

Why do people not believe in HIV and AIDS? Perhaps they are just scared. Here are the most common myths.

AIDS is caused by an unhealthy lifestyle - drugs and homosexuality, as there are more cases in this group.

In 1993, scientists conducted a study of homosexual men, almost half of whom were HIV positive. within 8 s extra years observations in the group of infected half of the patients fell ill with AIDS. No one in the HIV-negative group got sick.

Antiretroviral therapy is more dangerous than the disease itself, as it itself suppresses the immune system.

This drug was developed this drug against cancer, it is able to stop the reproduction of viruses. Experimental patients were treated too high doses, so the drug had a harmful effect. Now the correct dose has been selected, and the active substance is used in combination with other, more modern and safe means.

The effectiveness and safety of antiretroviral drugs has long been proven by dozens of studies. Dozens of studies have proven the relative safety of these drugs. Of course, absolute harmlessness cannot be achieved, but cancer is now treated with chemotherapy, which works. Mortality and the likelihood of developing AIDS among HIV-infected people taking antiretroviral therapy are 86% lower than those who refused treatment.

HIV cannot be the cause of AIDS, since no one knows exactly how it works - scientists do not know the details of the pathogenesis of the disease.

The pathogenesis of the infection has been studied quite deeply, although some details are still a mystery. However, there are convincingly proven data on the causes of the disease and effective methods of its treatment. The mechanism of activity of Koch's bacillus is also not fully understood, but this does not prevent phthisiatricians from treating and curing tuberculosis.

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There are also HIV dissidents in Karelia. We spoke with Arina Anatolyevna Arkhipova, who works as a clinical psychologist at the Center for the Prevention and Control of AIDS and Infectious Diseases

What can doctors say to HIV dissidents?

Usually ardent HIV dissidents are aggressive: they base their reasoning on emotions, not facts, so arguing with them is the same as “feeding the trolls” in discussions.

Why do you think people in the 21st century believe in such theories?

The reasons may be different. Someone just read a couple of articles on the Internet, and then it became too lazy to understand this issue. Someone wants to promote themselves and assert themselves. Based on the fears of people, it is very easy to gather a "flock" for yourself. Often HIV-dissidents are people who are already sick. Here the psychological defense mechanism turns on - denial: it is easier for a person to deny his incurable disease than to take responsibility for his health.

An analogy can be drawn with antipsychiatry. This is a movement whose members deny schizophrenia and other mental illness. They believe it's a conspiracy by pharmaceutical companies. It is easy to shoot videos where people in white coats talk about a conspiracy, but a sane person simply will not believe this.

How do doctors work with such people?

Confident in their rightness, HIV dissidents simply will not go to the center to be observed by specialists: to donate blood, check their immune status, control their viral load, undergo a full examination in order to start taking drugs on time, if the need arises. But sometimes those who still doubt come to us. If they are not completely "zombified", we try to convince them, we talk, we explain, we ask them to think properly. We cannot forcibly treat a person, even if it is a pregnant woman. The only thing we can do in this case is to apply to the guardianship authorities if the child is diagnosed with HIV infection due to the fact that the woman did not take prophylactic drugs, and the mother refuses to treat him. Those patients who had doubts for a long time, did not want to take drugs, but still did not disappear from our field of vision, but from time to time came to the center, donated blood, were examined by doctors and began, although sometimes already on later dates treatment, subsequently thank and say that they now understand that we saved their lives.

Are there HIV treatments (other than antiretroviral therapy) that have been at least partially proven effective?

Antiretroviral therapy prevents viruses from developing, as if locking them up, so the patient's immunity does not fall too much. Now that's enough effective method to prevent the development of the disease and live on.

It is still difficult to talk about other really effective methods. There is only one case in the world when a patient with HIV was cured. This is the "Berlin patient", American Timothy Brown. In 1995, he was diagnosed with HIV, for 11 years he took drugs that curbed the development of the infection, but in 2006 he fell ill with leukemia. In the course of her treatment, Brown was transplanted in Germany with the bone marrow of a patient who was immune to HIV (there are such people, however, they are very, very few).

Do any alternative medicines work?

Alternative medicine does not work in the treatment of HIV. The worst thing is that sometimes people hope for miracle pills and stop being treated with proven methods. We had a patient who was taking antiretroviral therapy and then unexpectedly ended up in the hospital with pneumocystis pneumonia. It turned out that she bought expensive dietary supplements and began to take them instead of prescribed drugs. Time was lost, the patient died.