Dissidents. Three stories of people

On World AIDS Day, an AiF-Chelyabinsk correspondent spoke with four patients who attend school at the regional AIDS Center. These people are united by HIV infection, as well as the belief that their diagnosis is not a death sentence.

Positive hero

HIV is an infectious disease that attacks immune cells. The progression of HIV leads to a decrease in cells, eventually reaching a critical number, which can be considered the onset of AIDS.

Let us immediately note that the names of the characters in the stories have been changed. Psychologist of the center Ilya Akhlyustin explains why:

“Most people living with HIV do not talk openly about their diagnosis. And it is right. We must understand that the human immunodeficiency virus is a chronic disease. And people with other chronic diseases, say, diabetes, do not announce their problems to everyone. We teach our patients not to shout at every step that they have HIV, but at the right time not to hide their diagnosis.”

Andrey 40 years old, he has had HIV since 2013. Hooligans attacked him at night, broke a bottle on his head, cut themselves with fragments and wounded Andrei. Infection occurred through blood.

“My health was deteriorating. Doctors treated completely different diseases. But nothing helped. When almost everything had been ruled out, they offered to take an HIV test. It turned out to be positive. To be honest, my heart even eased a little - I thought I had cancer. I heard about HIV that people live with it for a long time, especially now that medicine allows you to lead a quality life. I registered and began attending the patient’s school; the first educational program began with the film “I+”. Almost nothing has changed in my life, the only thing is that the regimen has changed a little - twice a day you need to set aside a few minutes to drink vitamins.”

Andrey calls himself a positive hero and jokes that he has acquired another positive quality. First of all, I told my parents and close friends about my diagnosis; some colleagues at work know about it.

Unfortunately, not everyone in society treats this diagnosis with understanding. Andrey tells an incident about this:

“I was examined at a clinic for HIV-infected people. I was sent for an ECG to another building. The doctor, seeing my card, says: “So, wait, the healthy ones will pass, then you, otherwise they will have to treat you after.” Firstly, you need to treat it after each one, and secondly, I am no different from previous patients, there will be no harm from me - there are other more contagious diseases.”

The devil is not so scary

When a 35 year old Dmitriy In 2015, he learned about his positive status, and his hands gave up. He thought that life was over, his first thoughts were: “How much is left?” Then he began to come to his senses and accept his diagnosis. I read a lot of literature, sat on forums, and delved into the study of this disease.

“I realized that the devil is not as scary as he is painted, and I got used to this idea. I admit, I had a psychological block on sex - for more than a year I didn’t even want to think about it. At first, out of frustration, I began to abuse alcohol. Then I came to a school at the AIDS center, learned some lessons for myself, began to realize myself in this area, and today I already provide peer counseling to people like me.”

Dmitry was supported by his friends; he did not tell his parents about his diagnosis.

“At first, I myself called my friends to talk about the disease, I wanted them to support me and take pity on me. But then I realized that nothing was changing or happening, they wouldn’t help me in any way, and I stopped talking about it. Now I can voice my diagnosis to some doctors, a dentist, for example. The therapist who came to look at your throat or measure your blood pressure – no.”

Plus HIV+

Dmitry found information that people with HIV are healthier because they see doctors more often and take care of themselves. A healthy lifestyle becomes an incentive to live longer, because any cold can lead to a worsening of the condition. But he doesn’t like visiting doctors in regular clinics. Just like Andrey, he faces the disgust of doctors.

“The problem is that the old generation of doctors knows little about HIV and they are afraid of people with this diagnosis, like the devil of a leper,” says Dmitry.

The psychologist says that for society with a negative HIV status, there is not enough information about this disease; many do not even know that they can share a mug with an HIV-infected person.

Nikolai and Maria

Nikolai and Maria They've only recently lived together. They met on a website for HIV-infected people. Maria was infected 10 years ago by her husband, from whom she gave birth to a healthy child, because she started taking therapy on time. Nikolay has been living with a positive status for 20 years; he switched to therapy only three years ago, when he began to feel really bad. I was embarrassed to talk to doctors about my diagnosis.

“Now I perceive HIV as a simple chronic disease, I am grateful to the state that it treats us for free.”

Now Nikolai calls on HIV-infected people to report their status to doctors, because the doctor, based on the diagnosis, can prescribe the correct treatment for the same flu.

“Hide your status means shortening and worsening your life. But you don't have to tell everyone about it. No one at work knows me. If we worked in an area where we needed to come into contact with blood, then I would say that I have HIV. And so I know that I do not pose any danger to the person who communicates with me.”

Without hiding the name and status

But there are people who do not hide their faces. Chelyabinka Polina Rodimkina Now lives in Yekaterinburg, she openly tells everyone about her diagnosis. Polina believes that there are much worse diseases.

“I don’t hide it because I don’t want to. What is there to hide? Why do I continue to live and create? That I enjoy life and live to the fullest? I have nothing to hide because I am an ordinary person. After accepting the status, I came to life. When I found out about the disease, I simply felt with every cell how fragile life is. And now I feel like in the song “there is only a moment.” My status is in no way a test, it is a gift from heaven. I don’t believe in fate, I believe in God, I love my life and the diagnosis is only part of it.”

Polina admits that society’s attitude towards her varies. But she argues philosophically: “There are so many people, so many opinions, I don’t know how I would behave in their place.”

“Peer consultants” of the 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 life with HIV. According to the heroines of the material, this diagnosis is not something to be afraid of. After all, you can live with him.

– 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 went with a purulent-inflammatory skin disease. The problem bothered me for quite a long time, but at a certain point it began to progress greatly, and I was afraid of blood poisoning. I took the tests, and when the first results came back, I realized from the doctors’ reaction that something was wrong. Then, in the 90s, 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 short-term shock, a lack of understanding of what was happening. Deep down, I knew that this could happen to me - I used drugs, then there was a break when I got pregnant and gave birth to a child. Then after some time I went all out again. And you see, all the time I thought that I would “get off”, that I was not a drug addict, that just a little more and I would definitely quit. And when I found out that I was sick, the world collapsed. And such hopelessness lasted for several years. Church and turning to God became a turning point in my life. Only after this did awareness begin 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 scary. So, harmless fun, fashion. It was this permissiveness that ruined me. In my fifth year of law school, I quit my studies and went into nirvana. From time to time I have forced periods of sobriety, during which I try to return to normal life. It was during one of these periods that I underwent a preventive examination, where I learned that I had HIV. If before this I had at least some hope for a better life, now even that has been taken away from me. I didn’t want to live, I tried for a long time to forget myself again in drug addiction - I kept thinking that I could 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 and suffer. How could it be different, because I have HIV! But nothing like that happened, there was a diagnosis, but there were no manifestations of the disease. I began to think and slowly come to my senses. By force of will, I gave up drugs. I refused for a long time, but I did it. And I began to think about how to live further.

– Who did you tell about what happened?

Ksenia:- To mom. I told my mom right away. She and I have always had a trusting relationship. Mom supported, reassured, said that we would move on with our lives. Although, of course, she was always very worried about me - and when I started using drugs (I come from a decent family, no one close to me could even think that I, once an excellent student, athlete, activist, could become addicted to dangerous chemicals), and when I found out about the diagnosis. To this day, except for her and the doctor I see, no one knows about it. Neither my daughter, who is already 10 years old, nor my sister, nor my brother. Nobody. Our society is not yet ready for such revelations, and I do not want to conduct psychological experiments on myself or my child. For what? I have enough warmth and support from my mother, and then I am a believer. Thanks to God, I quit drugs, changed my point of support from temporary material things to truly important values ​​in the life of every person - family, relatives, close relationships. Everything changed. Thanks to God, I found a good, interesting job that brings me pleasure. God willing, I will meet a person with whom I can start a family again, and to him, yes, I will be ready to tell him about my HIV status. But I don’t think it’s necessary to tell others, strangers.

Angela:– I also shared with my mother first. For a long time, no one except my mother knew about it. The next close person to whom I opened up was my future husband at that time. Today, my husband and I have been together for about 13 years, and I still remember my experiences about this. I was very worried about our relationship, I didn’t know how he would react. I was afraid of losing him. I kept coming up with some phrases, choosing, as it seemed to me, some special words filled with deep meaning to tell him the truth. And when she finally decided to start a conversation, tears began to flow. But, to my surprise, he took this “news” calmly. He said that I was a fool and he wasn’t going to leave me anywhere. And in terms of work – here I agree with Ksenia, society is still little informed about HIV. Many people still think that you can get infected by shaking hands or talking.

– Speaking directly about therapy, how easily does it fit into your lifestyle?

Ksenia:– There are no particular inconveniences in this regard. At first there was a transition period, so to speak, of physiological adaptation to antiretroviral therapy. But these are all purely individual sensations; over time (and quite quickly) the body adapted to the drug regimen. And so – 2 tablets in the morning, 3 tablets in the evening. At the same time. At first I set the alarm, because I couldn’t miss it, but now everything has become automatic. No, there are no difficulties, that's absolutely certain. Many people will probably be interested in how an HIV-infected person feels physically. I answer: exactly the same as a healthy person. Only due to 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 indicators are all normal and he is completely healthy. But I strictly followed and continue to follow all the doctor’s recommendations. My only regret is that at the time I was diagnosed with HIV, there was no such approach to controlling this disease. Of course, now this is much simpler: drugs are issued by the state on a budgetary basis, so, we can say, all the conditions for a quality life are there. What I want to note: therapy does not prevent me from realizing myself 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 necessary to say to those people who have just learned about this diagnosis?

Ksenia:– It seems to me that we need to give ourselves time to accept this reality. No matter what we say now, when a person finds out that he is sick, it is always a colossal stress. But sooner or later the stress will pass, and you will need to make concrete decisions and take concrete steps. You need to think and act with a cool head. You should not be embarrassed to seek advice from experienced people living with HIV, you need to listen to an infectious disease doctor, be sure to get examined and adhere to the prescribed therapy. And what is important is that treatment should begin as early as possible.

Angela:– No one is immune from this disease. First you learn to live without drugs, then you learn to live with HIV, and then a stage comes when you understand that the problem is not HIV, the problem is you. 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 and helps you realize many really important things. I stopped wasting my time pointlessly, started working on myself, changing – and life took on a new meaning. Therefore, everything is possible. And this “everything” depends directly on us.

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When an ordinary patient at an AIDS center learns about his status, denial is a normal reaction, the first stage of acceptance, psychologists say. But crossing it is often hindered by the information that is disseminated in huge quantities by HIV dissidents who do not recognize the very fact of the existence of the virus. The most common arguments in this case: 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 price for denial - in the stories of HIV-positive people who refused to take therapy for many years.

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

As of August 1, 2016, 62,542 HIV-positive people are registered in the Samara region, of which slightly more than half of the patients are available for observation. Many refuse to take therapy, do not undergo the necessary tests and disappear from the attention of doctors immediately after diagnosis. They may not go to the AIDS center for years, ignore taking medications, tell others that HIV is a great hoax, or pretend that nothing is happening to them. But there comes a time in everyone’s life 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 got infected through sex, probably.” After that, I didn’t take therapy for six years, and I didn’t get tested at the AIDS center for the same amount of time.

“When I found out about the diagnosis, it felt like I had been hit over the head. I left the office, but I had no strength, complete emptiness, as if everything had been taken away from you in one second. Doctors then seemed to talk 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 you’ll die in seven years, or maybe in twenty.” And there is one question in my head: “Why with me?”

I cannot call myself an ardent dissident. Rather, I just wanted to delay the start of therapy as much as possible. I associated pills with being tied hand and foot - you depend on the dosage schedule, you have to take a bunch of medications a day. I thought I couldn't handle it. The fact of lifelong simply killed, it’s like a habit that cannot be given up. And then I simply decided to convince myself that nothing bad would happen to me, that I could continue to live the way I lived before the diagnosis. Back then, I wasn’t afraid of much in life at all; I had also just started working as a flight attendant - this is a huge burden on the body.

In 2011, I suddenly developed an acute form of herpes, and half of my face became swollen. Terrible. I called an ambulance, but they refused to hospitalize me - they didn’t believe that things could be so bad with herpes, but they couldn’t see me on the phone. As a result, I ended up in Pirogovka and 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 take therapy... If I had started doing it right away, perhaps everything would have turned out differently.”

Anna does not have a Moscow registration, and she is not registered at the local AIDS center. We 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 infection 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 at any opportunity not to admit the obvious. And most often, at this 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 even 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 parents who denied treatment gave birth to a child with HIV. I think the main reasons for this whole situation are people’s poor awareness of the virus, a banal desire to deny the obvious and mistrust of doctors.

~

Alexander

37-year-old Alexander lives in Samara, works as a driver at a factory. I learned about the diagnosis in 2001. I got infected, like most people 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 didn’t listen to him then. Then I didn’t go to the hospital for ten years. He quit drugs because of problems with the law, but continued to drink. I felt normal all this time and without therapy. I read HIV dissident books and liked that they contained convincing arguments, for example, that no one saw the virus. I didn’t think about the consequences then, and I didn’t think about anything at all because of the alcohol.

I took therapy for about two years. Then I quit because I started drinking again. I thought: what’s the point of taking medications and dousing them with vodka?

Once, in the middle of summer, my temperature rose to forty and did not subside. I knocked it down for a couple of hours, it rose again, and so on for a whole week. I didn’t want to until recently, but I realized that I had to go to the AIDS center, because apart from the temperature there were no symptoms. Doctors found out that I have a low immune status, only 9 CD 4 cells ( The number of these cells indicates how badly HIV has affected the immune system; treatment begins when the patient has less than 350 CD 4 cells - approx. ed.). In fact, they pulled me out of the dead, prescribed therapy - about seven tablets a day. After two months, I already had 45 cells, and little by little they became more and more. I took therapy for about two years. Then I quit because I started drinking again. I thought: what’s the point of taking medications and dousing them with vodka?

During the same period I got married. My wife also has a plus, and she also did not take therapy. It turns out that refusing treatment is a personal matter for everyone. And then she was suddenly hit with kidney problems. 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.”

During the last week of her life, Alexander’s wife was connected to artificial life support. When Alexander finally realized that nothing could be fixed, he went on a drinking binge again. Then I decided that I needed to get out of it. On the fifth day of sobriety, my wife died. Alexander has since been back in therapy. He says that this time he will quit the pills only if he firmly decides to die.

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

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

~

Anton

Anton is no longer there. A few years ago, he moved to Krasnodar; he still had friends in his native Samara, and a little daughter in Tolyatti, who was born from his former drug-addicted 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. They lived in perfect harmony for about a year, making simple plans: to live by the sea, and to always be warm, and to always be together. Anton sometimes attended HIV+ self-help groups, but called himself a dissident and stubbornly refused treatment.

A year ago, his immunity was greatly reduced, and his temperature kept rising. Doctors insisted that it was 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 again: “They keep repeating: “Treat tuberculosis, treat tuberculosis.” But 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 hospital, but he did not want to. As a result, they had to call an ambulance and practically forcefully take him to the hospital.

Doctors admitted Anton to the infectious diseases department with suspected sepsis and cerebral edema. Then it turned out that he had tuberculous meningitis. He lived only a short time after that, never getting out of bed, and then fell into a coma. On July 26 of this year, Anton died of brain death. The heart continued to beat for some time.

Text: Anna Skorodumova/Illustrations: Daria Volkova

After the news of the HIV epidemic in Yekaterinburg, a wave of trepidation swept across the country. Journalists frantically called local centers to find out statistics for their region. What if it’s also an epidemic? Nobody 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, which stated that HIV was a worldwide conspiracy, was published 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. Afterwards, some researchers began to doubt that HIV and AIDS are related. Then scientists managed to prove this connection, but there were people who did not believe, including famous figures in politics and art. For example, South African President Thabo Mbeki believed that sorcerers could cope with diseases, but professional doctors could not.

Screenshot of correspondence in one of the groups

The largest Russian community of HIV deniers, VKontakte, has more than 15 thousand people. There are also a couple of large communities with 5-7 thousand users. Organizers raise money to promote their community, persuade those who have doubts to quit prescribed treatment, stop going to AIDS centers and refuse to get tested. 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.

The group members ruin not only themselves, but also their children and partners. Due to the lack of observation, 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 striking stories about dissidents from the group “ HIV/AIDS dissidents and their children". It has about 5 thousand members who try to convince doubters, and at the same time collect statistics on the deaths of activists of the dissident community. The names of the characters have been changed.

Story one

"As long as I'm alive, no bitch will get a child"

— 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 contacted a number of competent authorities with a request to help resolve the problem. But this didn’t help either. Moreover, one of the ardent HIV dissidents decided to help the woman in the “fight against the speeding car” and filed a complaint against us with 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 go to the above authorities to explain the essence of the current situation. 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 child's condition left much to be desired. We do not know whether they began to treat him after the death of his mother. This morning I was at the Investigative Committee, where I again had to explain what was happening. If the Investigative Committee had seen a crime in my actions, it would most likely have been under the article “Violation of privacy.” The Investigative Committee plans to make a decision to refuse to initiate a criminal case. “As long as I’m alive, not a single bitch will get a child,” Elmira Lukina wrote in one of the dissident groups. As a result, the woman’s son died on July 10.

Story two

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

— Vladimir was an ardent adherent of HIV denial. He allowed his wife to die from AIDS, two daughters to become infected (home birth), and his new lover to become infected. This story mixes everything: HIV denial, home birth, children with HIV, Slavic beliefs, yoga, an aggressive point of view. But first things first.

He posted materials from HIV dissidents on his social network page. He was a member of the “HIV MYSTIFICATION” group. In his videos you can find almost all alternative beliefs, be it HIV denial, anti-vaccination, Levashovism, meat-poison, pampering on physical topics, anti-cancer soda, and so on for every taste. In 2006, Vladislav and his wife gave birth to their first daughter, and two years later - their second. Both girls are infected. Their dad didn’t believe in the HIV diagnosis and threw out the tests. I convinced my wife that there was no problem. Some time later, his wife died of AIDS. After his death, his mother-in-law deprives him of parental rights. In a subsequent relationship, he infected another woman who fell in love with him. Died of AIDS on June 2, 2016 at the age of 44.

Story three

“We took a taxi to the cemetery together.”

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

— I contacted him 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, Gidrostroy district, near the Titan hypermarket, I 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 organization dialogue". “We took a taxi together to the cemetery on the Lenin farm to the grave of my mother, who died in 2011.

After this, the “healer” demanded 15 thousand from the woman. She didn’t have that amount, so she went home, took all the gold jewelry she had and took it to a pawnshop.

“I was feeling unwell, and Zema said that we needed to clean the mosque, we went to the mosque. I came home to Ainur, Zema’s daughter, at her invitation. Me, Ainur and her son-in-law drove in my son-in-law's car to the mosque for purification. In the mosque, I sat on my knees, and Ainur prayed. On the way back in the car, Ainur told me that to succeed she needs to perform an additional ritual, which requires money, and I must give it. I didn’t have enough money with me, so I gave away my iPhone 5,” Inna continues.

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

“I called Zema and shared my disappointment about the positive test result. Zema scheduled a new session, during which she sprinkled dry grass on my head and read spells. I paid 5 thousand for a session at her request. After the session, I was told that doctors in AIDS centers lie, diagnose HIV infection without reason and prescribe useless medications, listening to them is harmful, I can’t infect anyone with HIV, because it doesn’t exist. Two weeks after this, the false healer gave a certificate of absence of HIV, taking 3 thousand 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 contagious through sexual contact, believed in healing and stopped taking medications prescribed by doctors, getting tested at the AIDS center and going to doctors. “At the same time, I felt good for a long time,” describes the woman who later died. - Over the course of a year, Zema called me and offered to buy pills for vigor and fun, and I also received SMS messages from Zema and from Ainur with offers to call, questions about health, whether I was working, 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 a high fever, she was hospitalized at the Krasnodar infectious diseases hospital, where she was diagnosed with hydrocephalus of the brain. On March 8 of the following year she died.

Story four

“Her husband still works as a doctor.”

Once upon a time there lived a girl with the beautiful name Angelica, who, under strong pressure from her common-law husband (by the way, a practicing therapist and an ardent HIV dissident), began to deny the existence of HIV, with which she was infected. During my pregnancy, I did not register with the antenatal clinic, and in principle I never visited it. At the AIDS center, she wrote refusals to prevent HIV prevention for the fetus, and was warned about the consequences of such refusals. She gave birth at home, the birth was delivered by her common-law husband. The baby was immediately put to the breast and continued to be breastfed. Of course, there was no preventative treatment for the child. As soon as the AIDS center learned about the birth of a child, the mother and baby immediately began to be invited for examination to rule out the fact that the child had been 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 showed up without him. They behaved aggressively and again wrote refusals to undergo 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 no action was taken by the guardianship authorities and law enforcement agencies.

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, fulminant form.” Despite all the treatment measures carried out (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. The parents did not bear any responsibility 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 still works as a doctor.

Story five

“Where is your ex?” - “He died a year ago.”

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

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

-Hello, girls! Tell me, are there those who hid their HIV from their other half? And how can I say it? And is it worth it? There was intimacy more than once. And without protective equipment...
- Friend, if you are one hundred percent sure that there is no HIV, then why talk? I’ve been dating a man for a year, I didn’t inform him! He takes HIV tests every six months - it is negative!
- Oh, Mary, do you have a new boyfriend? Where's your ex?
- So he died a year ago ((
- Oh, sorry, I didn’t know (What happened to him?
— Pneumonia (At the autopsy they found pneumonia... but they were treating for tuberculosis! With its 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 - it happens to everyone.
- Clear. So how should we talk about our advantages? Oh, listen, Mary, how long have you been plus?
- I have five years and so does my child.

For those who are not aware, the Criminal Code has an article for knowingly putting another person at risk of contracting HIV infection and is punishable by up to one year in prison. Infecting another person with HIV infection by a person who knew that he had this disease is punishable by imprisonment for a term of up to five years. Infecting two or more persons or a minor is punishable by imprisonment for up to eight years.

Myths of dissidents

Why don't people 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 this group has more cases.

In 1993, scientists conducted a study of homosexual men, almost half of whom were HIV positive. During more than 8 years of observation in the group of infected people, half of the patients developed AIDS. No one in the HIV-negative group got sick.

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

This medicine was developed as an anti-cancer medicine that can stop viruses from multiplying. Experimental patients were treated with too high doses, so the drug had harmful effects. 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 being treated with chemotherapy, which works. The mortality rate and likelihood of developing AIDS among HIV-infected people taking antiretroviral therapy is 86% lower than among those who refuse treatment.

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

The pathogenesis of the infection has been studied quite thoroughly, although some details still remain secret. However, there is convincing evidence about the causes of the disease and effective methods of treating it. The mechanism of activity of the Koch 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 talked to Arina Anatolyevna Arkhipova, who works as a medical psychologist at the Center for the Prevention and Control of AIDS and Infectious Diseases

What can doctors say to HIV dissidents?

Typically, ardent HIV dissidents are aggressive: they base their reasoning on emotions rather than 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 vary. Someone simply read a couple of articles on the Internet, and then became too lazy to understand this issue. Someone wants to promote themselves and assert themselves. It is very easy to gather a “flock” based on people’s fears. Often people who are already sick become HIV dissidents. This is where the psychological defense mechanism comes into play - denial: it is easier for a person to deny his incurable illness than to take responsibility for his health.

An analogy can be drawn with antipsychiatry. This is a movement whose participants deny schizophrenia and other mental illnesses. They believe it's a conspiracy by pharmaceutical companies. It’s easy to make videos where people in white coats talk about a conspiracy, but a sane person simply won’t believe it.

How do doctors work with such people?

HIV dissidents who are confident in their rightness simply will not go to the center to be observed by specialists: donate blood, check their immune status, monitor their viral load, undergo a full examination in order to start taking medications 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, explain, and ask them to think carefully. We cannot forcibly treat a person, even if she is a pregnant woman. The only thing we can do in this case is to contact the guardianship authorities if the child, due to the fact that the woman did not take preventive medications, is diagnosed with HIV infection, and the mother refuses to treat him. Those patients who doubted for a long time, did not want to take medications, but still did not disappear from our field of vision, and from time to time came to the center, donated blood, were examined by doctors and began treatment, although sometimes at a later stage, and subsequently thanked and they say that now they understand that we saved their lives.

Are there treatments for HIV (other than antiretroviral therapy) that are at least partially proven to be effective?

Antiretroviral therapy prevents viruses from developing, as if locking them, so the patient’s immunity does not drop too much. Now this is a fairly effective method to prevent the development of the disease and move on with life.

It is still difficult to talk about other truly effective methods. There is only one case in the world where 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 medications that restrained the development of the infection, but in 2006 he fell ill with leukemia. During her treatment, Brown in Germany received a bone marrow transplant from a patient who was immune to HIV (there are such people, although there are very, very few of them).

Do any alternative medicines work?

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

Olga Kuzmicheva, 36 years old

I was 20 years old, eight months pregnant, I came to the antenatal clinic. I took the tests, came back to get the results, and they asked me to donate blood at the immunological clinic. I handed it in and forgot. After 10 days I went to get the results. They told me that I had HIV and offered artificial birth. I started getting hysterical; at that moment I didn’t understand anything at all. I started to stutter, I said: “What artificial birth? You understand, I have a stroller, onesies, and 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.

I didn’t immediately remember how the infection happened. I used to use drugs intravenously. I started because of my husband. Because of my character and some kind of youthful maximalism, I decided to save him - to prove that I could quit. That's how I stupidly got involved. Then there was a rehabilitation center, a year of sobriety. But there was a breakdown: we drank at a friend’s birthday party. Her husband suggested injecting herself, and then I no longer had much control over where whose syringe was. Then I finally managed to quit, and later I found out that I was pregnant.

For the birth I was taken to the second infectious diseases hospital (the regular maternity hospital did not admit me). There was a department for HIV-positive people, and there were drug addicts all around. They called a doctor from the maternity hospital for me. He was wearing glasses and a red oilcloth. When he cut the umbilical cord, blood sprayed out. And he screamed like crazy: “If I get infected, I’ll get you out of the ground.”

Then the child and I were transferred to a single ward. It's autumn, it's raining, dogs are howling, bars on the windows, drug addicts shooting up through the door. I took the baby, put it on my chest and swung all the way on the chain-link mesh.

I did not hide the diagnosis from my family. My husband supported me and said: “Well, we’ll live as we lived.” My mother-in-law was shocked and at first even tried to give me a separate washcloth and soap and shampoo. My mother said until recently that this was all nonsense, a deception of the state in order to pump out money. The best friend did not pay attention to this.

I could no longer work as a teacher, and I had to become a salesperson in a store. When they asked me to do a medical record, I changed jobs. Of course, they had no right to fire me because of my HIV status, but this still needs to be proven. I knew what was happening - they would judge, evaluate, eat, crush.

For five years I lived in isolation with the understanding that I was an outcast. I 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 my son going 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 really supported me. Despite her first reaction, she is still a wise woman and realized that she needed to somehow change her attitude. She began to read some books about HIV, and then slipped 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 found a job at a helpline for HIV-positive people. Over time, I began to come up with booklets and brochures. Once I was offered to write a script for a documentary about infection. I came home, laid out the sheets of paper, and thought for a long time about how to approach it. It all resulted in a letter to my mother. The result was a confession of 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 tried to dissuade me. But for me it was a turning point, I realized that I didn’t want to be in isolation anymore, I wanted 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 an absolutely happy marriage. I gave birth to my second son. Unfortunately, when he was only one and a half years old, his husband died. And I went to work. It was after his death that she became more active in charity work. By that time, I had already organized my own STEP foundation. I opened a mutual aid group for HIV-positive people, began visiting prisons and talking about HIV, conducting trainings, coming to rehabilitation centers, then opened my own, and began holding events.

Now the attitude towards HIV-positive people is gradually changing. The second time, five years ago, I gave birth in a regular maternity hospital, in a regular ward, and they treated me awesome. I heard a lot of kind and warm words addressed to me.

Although I still still face some prejudices. Several times they refused to operate on me; I had to be reminded of my rights. Unfortunately, doctors are often even more ignorant about this issue than patients. They shy away, get scared, and are sent 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 calmly laugh it off. But I still find it difficult when meeting men. I often don’t know how to talk about my status, sometimes this feeling of awkwardness arises, so I either speak up or leave. I don’t really like questions, but I try to understand that a person is simply responsible for his health.

The eldest son knows about my status. When I was prescribed therapy, he asked why I was taking these pills. I had to tell her that I had swallowed the Tamagotchi and now I would have to feed her tablets. My son even ran around for a while 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 kind of promotion do you have there again?” My youngest son is 5 years old, this year he participated with me in the All-Russian testing event.

“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 the 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 this and live for a long time. They talk about this both on the Internet and on TV. And there were no thoughts of going to commit suicide.

The antenatal clinic treated me normally. True, in the maternity hospital I was treated horribly by both the doctor and the obstetrician. Like with garbage. Can't put it into words. They were afraid to even touch me, as if I were a leper or contagious. They didn't help at all. 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. I couldn't get infected through sexual contact. My partner was healthy, he was tested, I don't take drugs. Then I read a lot of literature, it turns out that you can get infected in a nail salon, at the dentist, in almost any medical office where there are instruments. I don’t go for manicures, but I’ve been to both the dentist and the gynecologist recently. Now there is an epidemic; in our village, six hundred people have become infected in six months.

It was not easy during pregnancy: once every three months we had to travel from our village to the city for tests. The therapy was very difficult to bear at first. Everything seems to be fine with the child so far. The pediatrician treated us humanely. The baby also had to be taken to the city for tests, to a special center - every month, three months, and then another year.

When I found out that I had HIV, no one was around, I shared it with my best friend. Only later did she stop being a friend, although she is my child’s godmother, and I am hers. At one point, something clicked for her, and I became the worst person. Nobody knows why she was so angry with me.

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

I don’t know how I would have explained myself to everyone, but chance helped me. I wanted to double-check the diagnosis and donated blood at a private clinic. The result came, and it said: “The analysis is delayed, the reaction is negative.” I showed this certificate to the store owner, she calmed down. I also wrote a statement against my ex-girlfriend to the prosecutor's office for disclosure. An inspection is currently underway.

I am still taking therapy, but if necessary, I will ask the special center what such an analysis means. When my status became known, many people peeped into my soul and asked: “What? But as? Do you know what they write about you?” I said: “I know, I have a certificate stating that I am healthy.” The questions disappeared by themselves. There was more negativity towards my ex-girlfriend. Now everyone is sure that this is her invention - she just decided to ruin my life.

I feel like a completely healthy person. Sometimes the liver hurts, the therapy takes its toll. Then I take liver pills. Medicines for therapy are given to us free of charge for three months at a special center. There have been no interruptions in the supply of medications yet.

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

“I found 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: I led a healthy lifestyle, underwent medical examination, and at the beginning of our relationship, my ex-common-law husband and I took tests to be confident in each other.

In 2015, my husband was hospitalized with a traumatic brain 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 to live because he had AIDS. That’s how I understood what was causing his strange behavior: we hadn’t lived together for the last year, he started drinking, then disappeared, although he sometimes left bags of groceries and notes under the apartment door.

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 got tested at the antenatal clinic. And three weeks later the doctor called me and asked me to come in. That's how I found out about my diagnosis. I thought that I would die in a month. She held on at work, and when she was alone, she cried.

There was no panic, but there was a feeling of hopelessness. I even thought, maybe, to sell everything, go somewhere, take one last vacation. But we live in Russia, we don’t 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 imagined that he was sick, 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 have become infected because of the tattoo - he just got it at the beginning of our relationship. I didn’t have any resentment towards him, I was annoyed: why didn’t you say, we could have dealt with everything together.

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

When I carefully asked a colleague whether there were definitely no payments due from HIV insurance, she told me: “What are you talking about, this is such dirt!” But then, when everyone guessed, she did not change her attitude towards me, she did not even hint at offending me.

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 blood for HIV is not taken at any clinical examinations without our permission by law, and especially if surgery is not required, if they see that you are a socially prosperous person. Therefore, I did not know about my diagnosis for almost 6 years. Although my common-law husband and I were tested for infections, 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 and approach people with a smile. And it’s probably disarming. I bring good to people, and they have no opportunity to respond with anything 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.