"Some do not have time to come": I help people with HIV
In Russia, it is not the first year that they have been talking about the HIV epidemic. Despite the fact that the times when there was no effective therapy in our country were long gone, and modern drugs allow people with HIV to live a normal life, there are still many myths and prejudices around the infection. We talked with Elena Shastina, an activist and director of the autonomous non-profit organization for the prevention of socially significant diseases New Life, about her work and how she helps those who are most vulnerable to infection.
The topic of HIV in my life appeared in the late nineties. I lived in a residential area of Orenburg, there were syringes in the doorways, my neighbors and acquaintances walked in dark glasses to hide their eyes. It was the first time when I heard that someone I know did not even have HIV, but AIDS. Then these phrases began to sound more often, it happened with close acquaintances and even friends. My girlfriend was infected at fourteen - now she is no longer alive, and this is my great loss. In Russia, there was no medicine for a long time, and the diagnosis of HIV infection was associated with an imminent and, most likely, painful death. It was shown in the films: the heroes are in ulcers, they have skin cancer, they are scared, they are exhausted, they are afraid of them, they become outcasts.
Affordable treatment for people with HIV infection in our country appeared in 2006. And in 2007 I got into our autonomous non-profit organization "New Life". I came to a psychotherapist for a group of personal growth, I was taken to the next six-month cycle of training. So I met amazing people - altruists who want to change the world for the better - and became a volunteer, the same activist. Me and several other guys who also caught fire with this idea, taught how to be facilitators of group sessions. We started leading support groups for HIV-positive people.
People who have recently received a diagnosis may come to such groups - they think that their life is over, they don’t understand how to build relationships further, they are afraid of rejection. If such a person comes, we ask those who do not mind to tell their story - how old they are living with HIV, how they live. When fifteen or twenty people speak - and they look good, someone learns, someone works, someone is married, someone has children - he sees with the example of others that everything is in order. People live an ordinary life, and HIV does not determine their life: this is just one of the aspects of life. Then a person is inspired and does not close in on himself.
About work and vulnerable groups
Over the years I have had many different projects. One of them concerned the medical and social support of women: HIV-positive, drug-using, released from prison. Now some of the clients of this project are employees of the organization, everything is fine: they have housing, family, children, work.
Those who leave prisons with the experience of dependence and with the so-called socially significant diseases are adults. They committed crimes, stayed out, and society does not understand why they should be helped - especially when there are those who seem to need help much more, such as people with disabilities or mental abilities. And adults who have been released from prison - what kind of help do they need? They themselves have done things, let them get out as they can.
But after all, these are working people - and if their diseases are controlled, they do not cause problems either to the people themselves or to society. They have no successful independent life experience, they need to learn to live in a new way. In a stressful situation (there is no housing, it is not clear where to get a livelihood, because it is difficult to find work) they can return to addiction, stop controlling their diseases, and everything returns to normal. But if during this small favorable period of time (when a person is free, he is sober and full of hopes that he will begin to live again, when he knows what he wants) to support the person, he can restore his life. The project turned out to be so effective that we found the opportunity to continue it - we received a presidential grant to work with adults who had been released from prison. The project is called "From scratch".
I am very sorry that in our time, when there is medicine, people still continue to die. This is the saddest part of my work. There are people who refuse to believe that they have HIV
We mainly work with adults, but the organization also deals with children: HIV-positive and children from families affected by HIV. The difference is that HIV-positive children also help to get used to the therapy - so that they regularly take medicines, know how the drugs work, what their disease means. Specialists are engaged in this - they talk with children when they are psychologically ready. In adolescence, this is already necessary: children are on the verge of sexual maturity, they must understand the risks - first of all their own - and know what they can expect.
I am very sorry that in our time, when there is medicine, people still continue to die. This is the saddest part of my work. This year two people died, if I'm not mistaken. This happens for various reasons. There are people who refuse to believe that they have HIV infection - HIV dissidents. We are confronted with them or are already in intensive care, when someone comes to us from the side (the deniers themselves do not come to us), or when they doubt. In the second case, they have a million questions, they are ready to defend their point of view - but if they came to the organization, it means that they are on the way to consciously pursue their own health.
To argue with them and bring evidence is useless - it does not work. Need to build contact. For example, a man came to us - he is about forty years old, he is not married, he is infected through unprotected sex. When he was diagnosed, he closed in on himself, stopped communicating with people - this went on for three years. All this time, he thoroughly studied information about HIV infection and tried to find evidence that HIV does not exist. Then he came to our organization, brought notes and tried to convince us that we are all going in vain. After some time, he came to our event - we went to the barbecue. Then he said that in three years he was in the company of people for the first time. Two years have passed since then, he is now receiving therapy.
Sex workers have a facility to use condoms - this has been practiced in our city for many years. Men who use their services are willing to pay up to five thousand rubles for sex without a condom.
Some, unfortunately, do not have time to come - they die earlier. It happens that someone in a serious condition gets into an infectious diseases hospital and while he is there, receives drugs - and then he goes out of there and again stops being treated. It happens that a person wants to receive drugs, but he does not have any documents - for example, he lost his passport or he does not have a residence permit. This is also sad: the treatment is guaranteed by the state for free and for life, but a person cannot immediately begin therapy. Those who come to us, as a result, are registered with doctors and successfully receive drugs, but it happens that it takes several months. We help with the documents, provide a variety of assistance.
Establishing contact with the vulnerable groups we work with — sex workers, drug users, and prisoners — is difficult. The best access to these people is from organizations and communities like us. They do not feel safe, they can be afraid of the consequences, their lifestyle does not fit into the generally accepted norms - therefore, such people live very closed, hide what they do, where they are. It is important for them to feel a tolerant attitude and to understand that our employees have similar experience.
We had parallel projects for the LGBT community and for places of detention - these are diametrically opposite directions. It is important that employees working with their group (LGBT or prisoners) show maximum sympathy towards them. A person must fully accept the one to whom he goes, speak the same language with him. A person must understand what these people live. Then they begin to trust, word of mouth turns on - in such cases only it works. When we had our first trip to sex workers, the girl with whom we were going to go thought that with our condoms we would just be sent. We went, stopped the car a little to the side, came up and just said: "Hi! Have you been working for a long time?" We began to talk about the things that worry them: “Have you been raided long ago? How long have you been kept? What part does your mom take from you?” And then they told us what we can offer them, and advised them.
About women and HIV
Women in society are generally more vulnerable than men: they, as a rule, have domestic issues and care for elderly family members and children. Women are often economically dependent, they are psychologically suppressed - and if they are found to have HIV, this can be a reason for manipulation and even greater humiliation. Women with HIV are more vulnerable than men with the same diagnosis. I have met some good examples of discordant couples (when one of the partners is HIV-positive and the other is not) - such cases give hope. But, according to my personal observations of eleven years of work in Novaya Zhizn, 95% of women who come to us face stigma and discrimination - from partners, relatives or strangers when they disclose their diagnosis, for example, in medical institutions or maternity hospitals.
From women who became victims of physical violence from a partner, you can hear: "Who will I need with such a diagnosis? He hits, but he suffers me." The partner supports this attitude, attaches this label to it. Usually, women with a diagnosis do not leave such relationships, or, if they decide to break them, they come to another such partner. They are held by the fear of loneliness, the feeling that they will not be needed by anyone. This happens even if the partner of the woman has HIV too, and this is paradoxical. A sex worker came to us - she contracted HIV from a regular partner. Both are aware of this, but he insults her, exploits her, takes all her money, and she believes that she is guilty of having HIV. His diagnosis is not discussed, because he is a man - and she considers herself "spoiled".
I think that a person should have different information. We study astronomy at school - although we are not astronomers. Let a person know how children appear, that sex is not only for pregnancy.
I do not have data on how often women become infected with HIV from a partner who was not faithful to them. HIV is associated with other sexually transmitted infections. If a person is not protected, he has many sexual contacts, and these are gigantic risks of getting infected - and he carries them to the house, to the family. I will tell about other experience. Sex workers who work on the street, and not in showrooms, have a facility to use condoms - this has been practiced in our city for many years. Men who use their services (no one looks at their passport, but according to the women themselves, most often they have a family) know about it - and are willing to pay up to five thousand rubles from above (regular sexual intercourse costs one and a half thousand) for sex without condom. There are HIV-positive among sex workers. Those who are aware of their diagnosis and receive therapy will not risk, because they can get other diseases. They may ask a man: "Are you not afraid? I have so many clients - aren't you scared?" He replies: "Well, you always use condoms!" The man does not even think that it is a risk - and then returns home.
At the same time, it is incorrect to speak only about loyalty in the context of HIV. Loyalty is a culture, something global, but this does not go against education. I believe that a person must have different information so that he can make a choice. We study astronomy at school — although we are not all astronomers. Let the person know how children appear, that sex is not only for pregnancy - it can be planned, that it is possible to protect themselves, that there are sexually transmitted diseases. Let him have this information.
About discrimination
HIV is the only disease for which there is a separate federal law. There is also Article 122 of the Criminal Code of the Russian Federation “Infection with HIV infection”, its first part is called “Institut of placing another person in danger of acquiring HIV infection”. This article is very often treated against people with a diagnosis. It happens that an HIV-positive person, entering into an intimate relationship, tells the partner about his status - and then they quarrel, and the partner can write a statement about him. Or, for example, a person is undergoing therapy, he has an undetectable viral load - that is, the virus is not detected in the blood and he practically cannot infect someone (even through the blood). It does not experience the consequences of HIV infection and is not a source of infection - but this law requires you to inform any partner about the diagnosis. And why does he not oblige, for example, to report on thrush? Or about ureaplasma? Or about the human papilloma virus, which for women with HIV infection is the first cause of cervical cancer?
This law can be a reason for blackmail and litigation. And then, how to measure danger? If a person breaks his knee on the street, he is bleeding and they want to give him first aid - he must also inform that people are in contact with his blood. The law already controls the damage to health. HIV was allocated in a separate article even at the time when there were no drugs, the disease turned into AIDS and people died - but everything has changed for a long time.
And still people with HIV still can not be guardians and adoptive parents. They can have their own healthy children, but you cannot take the child into care, even if he also has HIV infection. Is this not discrimination?
Photo: aimy27feb - stock.adobe.com, Natika - stock.adobe.com
