The Zone.HIV

I learned about the diagnosis of HIV in the detention center. It was 1996. By that time, we had already heard the word AIDS, we knew that there were cases of the disease in Kaliningrad. But we didn’t understand how it was transmitted. It was believed that if you washed the syringe under a stream of water, even if there was a virus, it would wash off, and the syringe could be used safely again. Before we went to jail, we were a company of five, we got into drugs together. All of us got infected from the one. I survived one of the five. I’m the only one of the five survivors.

It seems to me that we, prisoners, were the first to start testing in Russia. Because you won’t catch any drug users in the city, but here, in isolation, it’s convenient: you can check everyone. And they ran tests on everyone. In general, then it didn’t even scare us, we didn’t have any information. Well, AIDS. We couldn’t understand what a threat that was to life, and what would happen next.

That times the testing process was long. They took tests, sent to St. Petersburg. And only after one and a half to two months we could learn the result. If a person were told now: "Wait two months," he would be really nervous. We had neither knowledge nor fear then. And so, the results were received. For some reason, I thought: "Let it be AIDS, but not syphilis."

How was the diagnosis announced? It’s ridiculous to remember now. They bring a person out "to the corridor", allegedly formally, to maintain some sort of doctor-patient confidentiality. The duty officer stands twenty meters away and shouts: "A piece of paper is there. Do you see it? Do you see a pen? Sign the paper. What’s there? Read. Keep the pen."

It said what sanctions I face for the spread, about the length of sentence if I infect someone. That was the announcement of the diagnosis. In the detention center by that time there had already been two male cells for HIV infected, as they then called — "speedbats," "speedozniki", and one cell for female.

I signed the paper, and they said to me: "With your bag to 45." I have to say that HIV was a death sentence those days. There was no medicine or even examination. We didn’t know what condition our health was in, even the doctors didn’t know. We saw that HIV/AIDS was progressing, and there hadn’t been any tests yet — what "immune," viral load — nothing. They only watched us how those sores were growing on us, developing.

That’s how I first ran into it. And all our "hee-hee" and "ha-ha" - just to get over the tantrum. The brain immediately set up a barrier. The most tragic thing is that there was no future left in a jiffy. I used to plan something: how I would be released, where I would go, but suddenly everything stopped. The void and nothing further.

The first I had written to my mother: "Mom, forgive me for everything that I have done. I have AIDS, and I don’t know how long I’ll live on." And I really didn’t know, and nobody knew. Maintaining her integrity, mom replied: "What goes around comes around." That’s all. After that, we were psychologically separated for a while. Later, really, everything changed. My relatives even began to grab my manicured sets at home. I warned: "Don't take my things, there are risks." All their barriers and fears about me have disappeared.

But then, in the detention center, we understood that we were doomed. That everyone would die in a short time. Someone, maybe in a month. AIDS was a sentence. People died all over the world, including Russia. There was an understanding: everything we were seeing then was probably the last we saw in life. In this doom, we all were waiting for death.

True, I was released soon. There was some change in the legislation — the only time I was lucky with it. And I went to the doctor. There we had a medical room for people like me then. Not even the study, but a half of fenced room. In the first half there was an infectious disease specialist, in the second one — a gynecologist.

And I asked: "Here I was diagnosed with… How long I have left?" The doctor replied: "Well, you are already thirty years old, nothing is reborn, nothing regenerates… That means not for long. Well, maybe you can last another year." A lot of people were said so. And that: "You are the first, let’s see on you how it will be."

We were all waiting for death. Well, you’re not going to sit around and wait. We all went up to no good. Someone drank, others started shooting up, went out to girls, were involved into sex work… Those were our last months on the earth. I think that’s a normal human reaction. They say that there were suicides because of diagnosis, but there were no such cases among my friends. We killed ourselves in a different way, using soft methods…

Those who were able to switch to the best — they have been living in Kaliningrad since 1996. Those who didn’t have time — we had buried everyone…

Since childhood, I painted well, graduated from an art school as an engraver-jeweler. I was even sent to an amber combine. But soon I went into maternity leave, and after that I began to abuse substances. And a jeweler-engraver is primarily a hand. And what were my hands and fingers after taking drugs? I have still a little regret that I left the profession.

After my release, I worked in a cafe, cleaned up the dishes. Moreover, I didn’t skip my job, I didn’t hang around too much. They even offered me training, to get behind the counter. But I was afraid of responsibility, money. At the same time, I carried the day’s revenue safely, I didn’t even think of stealing anything. There is an opinion that people who have freed money cannot be trusted. To put it mildly, a lot of these myths are greatly exaggerated. Perhaps I would continue working there and even "ripe" for training, but once our cafe was privatized, and soon it was over.

We, HIV-positive, were taken separately, about seventy people. To Petersburg, to Arsenal. That year and a half was a difficult time: everything was closed, even patios were on the roofs. Besides the bath, they didn’t take us anywhere. When I got out, I was afraid of cars — so I got away in prison. And the girls sat for three, five years in such kind of isolation. We were the second phase of HIV-positive.

And the first female wave went in the mid-nineties. They were appointed to Izhevsk, like. And they rolled all over Russia, no one camp hosted them. After all, it was unclear what to do with HIV-infected people. There were many cases of such infection in Kaliningrad, but Russia was sleeping in the dark, had been completely out of the loop.

And then they brought a car with AIDS — "speeders", "speedozniki", as they said. Then even the word wasn’t on the go. The car was full of "speedy" women: young, cocky, even violent — such a beehive. And they were rolled around the country for a long time. Then Tsivilsk in Chuvashia agreed to host them, but they were kept in a separate fenced off area. All that was united after a while only.

Those days in Kaliningrad there were no women’s camps, we were taken to great Russia. By train, through Lithuania, the borders were still open. We were carried in the "Stolypin" cars. Men — to Almetyevsk, it seems, and to the colony in Andreapol for drug edicts. And women — to Tsivilsk in Chuvashia.

At last we were loaded, duty officers with folders were walking up and down, saying where to. When it was my turn, they read: "Prosvirina — to Andreapol." Everyone started laughing, thought it was a joke. I said: "This is the male zone." But they answered that they haven’t got the authority to rewrite the destination, if they declared so in prison. Apparently, a drunk employee stamped.

So, I was taken to Andreapol. Everyone laughed, in all the cars. Someone joked that they were taking me there for selecting a new breed of frost and stress-resistant drug addicts. In the colony in Andreapol the seal "Andreapol — Kaliningrad" was put, and I went back. First along, then women joined in stages. I had stayed in Kaliningrad for a week, and again hit the road. I said to them: "Check right away." This time it turned out to be right: Tsivilsk.

A few years later, I went back to jail. We sat, talked. And a cellmate said: "It's nothing, now I will tell you a joke. One girl was sitting here, and she was transferred to a men’s camp." I asked, "When was it?" She: "Never, it’s a kind of a joke." And then I said: "This is not a joke, this all happened to me." So, my story became a joke and went on. Joke that’s funny to everybody.

By the 2000s, the borders were closed. Lithuania ban on entry for "stolypinki," and they were forced to build a female colony in Kaliningrad. Before that, there were only a couple of male colonies. And the first time there, as acquaintances with HIV told, they simply "rested". The employees were afraid of them, no one went in there. They did what they wanted. Moonshine, drugs and much more.

Then they tried to transfer them to a strict regime in another colony, but prisoners rebelled there: "We won’t sit with the "speedies", they are contagious." And they were returned to their zone. After a while, all isolated "locales" were removed. Now all prisoners are together, on common grounds.

My total prison experience is ten years. Several short terms: two years each, one and a half, and the last one I was sentenced for eight years. It is "fashionable" now and then it was — a shill girl came and asked to buy. I knew her well. I was get caught.

Then the police told me: "We are tired of you, every time you are freed, and so many people spin around you. The judge will be ours, this time you will sit for a long time." They asked for twelve years, three judges were replaced. Only the third one took the case, gave eight. I read the materials, my hair got up with a smoke: how did they put me, what for?

So, that was a case of a non-case, it was possible to blow up it.

The girl was sent to our place, she was at the hospital. I recall that she had blush cheeks, as in classic novels they portray pricey young ladies. Employees left the prison hospital for the New Year holidays. Therefore, they decided to unload the hospital, and if it was possible, everyone who was on their feet were taken back to their camps. Anyway, she was brought back to us.

Then her condition deteriorated and after the holidays she was taken to the hospital again. And a month or a half later, after the first fluorography, six people were sent to the tuberculosis zone. Then people came to us from our zone, also with tuberculosis. After all, we were immunocompromised and couldn’t escape from infection. Out of ten people, only two were without HIV. Also, poor nutrition and a lack of outdoor walks had played a role.

I was released from the "TB zone" in 2004. When it became completely bad, I was acted on. Not on the stretcher yet, but already leading by the arms, I was too weakened. And I was released with the 4th AIDS stage. About tuberculosis they believed they fixed me up. Now I know that when the immune system is weak, then tuberculosis isn’t practically visible in the X-rays, although it is. There is almost no immune response, so you can’t see. And with this tiny immune, I miraculously had lived to the time when the first drugs for HIV appeared.

After 2004, I’m out of the drug. Then I treated tuberculosis for a long time. It was a personal war, it’s so clingy. People with tuberculosis are very discriminated against. More than with HIV. Very hard psychologically.

With the beginning of treatment, you must cut off everything: work, if there was, and a social circle. In addition, you are constantly inspired that you shouldn’t go anywhere, not communicate with anyone. That you are a "biological bomb": once you get out, everyone around you will get infected. They put it in your head, and living with it is very difficult.

Then I had psychosomatics for a long time. Having been cured long after, I found out that because of constant intimidation, I hardly breathe. I was afraid to breathe deeply, so I used to be a "biological bomb." Although for a long time all tests were negative. Several years I wasn’t removed from a register: "You have HIV, everything can come back, you may get everybody sick. You have just cough up and everything around you may "light up".

Now, consulting people with tuberculosis, I am very careful with them. Apparently, you have to experience this for yourself in order to understand that you mustn’t disturb people and intimidate them like this. We need to talk about care and risks for others, but not in such methods that a person is afraid to breathe. Of course, I was psychologically mutilated. It seems to me that I still have not learned to breathe completely, it is not possible to "twist" out of myself.

Discrimination against people with tuberculosis is very large. People don’t know that two weeks of treatment — and you are almost safe for others. It isn’t talked anywhere. As the word "tuberculosis" arises, panic attack comes immediately: close, remove, isolate. A lot of people don’t know about HIV, and there they know even less. I remember that constant fear: everything will be known by the neighbors, everyone will be dragged to survey, the house will be poured with chlorine…

Eventually, I was cured, went through hell. But even now I am sometimes reminded of the past. Once we sued a medical institution, I represented the interests of my client with tuberculosis. The first hearings were held in our favor. Then I come, but security doesn’t let me in court. Chief The chief judge ordered not to allow me come in without a mask. It was a drain of medical information. I had to go to the pharmacy and buy a mask. I have realized: so many years have passed, I have long been cured, but the lever of pressure and discrimination they still have.

I have a lot of interesting accidents in my life. That’s how I started activism. It was the year 2006, or even 2005. There was no therapy, or it was just beginning. And the Posner’s program "Time to Live" appeared. He traveled about Russia with the film crew, talked about HIV. In each region, a person diagnosed was invited to live. It was the highlight of the program, the whole conversation structed on it.

I sat in the hallway of our AIDS center modestly on the bench, waiting for some specialist. They were already tired of looking for a person for their program, everyone had "closed faces", no one agreed. Right in the queue, they had come up to me and offered to take part in. And I agreed. Then I had a problem: I couldn’t find a job. Now it’s scary to remember: ex-prisoner, my weight was thirty-five kilograms, teeth in one. My mother also screwed me up, and I was hysterical to tears that no one was taking me to work.

They said: "This is what you will tell." Everybody in the film crew was very worried about me: what if suddenly someone recognized me, and I’d get hurt. They dressed me a wig, bought glasses, told me to come in clothes that I don’t wear at all. And I was unrecognizable, of course, in a strange skirt, in heeled shoes.

There was an awareness. When I was given the floor, I told about the fact that it was difficult for HIV-infected people to find a job. Never more. They didn’t let me continue. At that moment, we had some local medical showdown. They wanted to take away an autonomous institution — a former kindergarten, to remove the head doctor. And that scandal happened on the air. The parties concerned began to insult each other for this building. I was sitting and listening to.

Even Posner couldn’t insert a word. I sat and understood that during the broadcast they haven’t even said "HIV-positive", to say nothing of our problems. Only about that building. As Posner said later: "We arrived, we turned the wasp nest." That moment I realized very well that no one cares about us. We gathered together in the room to talk about HIV people, their needs, and… we had to listen to the officials just fighting over property.

I firmly realized then that I shouldn’t wait for what it would be said about us. We have to talk about ourselves. It was my first step, the first stair. My head turned on: "We are dying, and no one cares about this." Not activism, but that was the desire to talk about myself and ourselves.

I opened my HIV status publicly when we had therapy interruptions. The officials denied everything, they said that allegedly everything is good with us, that they give drugs and treat everyone. And I realized that I need to say in the first person: "I tell you in the first person, I’m going from the AIDS center now, and I was not given my medicine." Then every time it was scary to open status, it’s some kind of internal fear.

I opened up completely when my daughter got married. I was not afraid for myself, but for her: what if my status would be a barrier for someone? When she got married, the first thing I asked was if he knew I had HIV? She said she knew, and it’s okay. It was important to me whether he and his family would accept me. Now I have two grandchildren.

Daughter’s wedding was a tipping point. I had been carrying that secret like two bags on my shoulders for years. And everywhere I was afraid that it would be opened, that a stone would be thrown at me…

The diagnosis is a good sieve which sifts through your friends. Those who are superfluous — will leave, real friends will remain. You haven’t changed, you’re still the same for them. HIV is one of many diseases. You are not dumber, no worse, no dirtier than others. Those who accepted you are more reliable. And they, like you, often need time.

I’ve got more support. After the broadcast, they write: "We have seen, well done." And from the prisons especially: "Svetka, hold on!" It is very important for them when they are talked about. Everything paralleled: medicine interruptions and my daughter’s wedding. So, the stars have come together.

Generally, it is interesting to look back. Everything consists of milestones, like rosary beads. One important event — one bead. And it gives the way to the next one. You push away from it and come to what is now.

And the zone always hurts. Hurts and doesn’t let you go. No matter how hard you try to forget, it stays with you forever. I had a stage: "I've turned that page, everything has forgotten, we are going on", but it hasn’t work out. People from there are constantly knocking, seeking for help. I can’t say no to them.

I’ve made peace with it. This topic is with me, at least until the idealistic moment, when no one writes from there, no one calls. As long as human rights are violated, until everyone is treated properly, until sick people are released, until women give birth at large, until they are separated from children. But passing years, the calls are not becoming fewer.

At first there was the mutual help group "Crossroads" for HIV people which I joined in 2006. It has existed since 2000. The guys started when there was no cure. There could be twenty people in a year, the next one — almost nobody, because of death. Few of the founders survived to the beginning of treatment. Some of them had waited, but soon left — I led them on their last journey. Only Roman survived and remained.

We founded the non-profit organization "Status +" with him and another girl in 2008. Even then, a circle of people who wanted to help not only themselves, but also others appeared in our group. We created an organization, got more serious. We studied, looked for what and where there was on our theme. After all, organization is a responsibility for people, often strangers, coming to us.

Treatment for HIV appeared then in Russia, but no one really understood what what’s going to issue from it. By that time, we had already visited several trainings, studied, and became an important information source in the city. Therefore, people went to us actively. Those who we helped then — help others now. It was a good time — such cohesion. We understood that this problem is often difficult to overcome on our own, but together a lot of things are possible. From the very beginning, we were such fighting fish — we were not afraid of anything.

A girl once turned to us about family violence. We plunged into three cars and went to talk. The guys were strong in the group, you could never say that they had HIV. When we came to their house, you should have seen the face the face of the girl’s cohabitee. We warned him that next time the conversation wouldn’t be limited. There were no more complaints from her.

From 2010 and up to 2016, there were interruptions in treatment in the country. And our organization, I must say, was in the doghouse with the state. You know, treatment is our lives. We knew what we stood for. There is nothing more valuable than life. There was no fear, because there was nowhere to fall back. We took to the streets, on pickets, because we couldn’t get through to them otherwise.

We were told: "You're messing everything up, we can negotiate in a different way." But we were well-informed about where and what auctions were, how much was purchased and how much was needed. Being informed, we asked substantively: "Why have you purchased so little?" We didn’t take to the streets to riot — no one is outraged when everything is going well. Once we came to the panel discussion in three monkey T-shirts: "See nothing, hear nothing, say nothing." That’s the image of officials who lied about how well we were doing.

Doctors had to get out of that: change schemes, cancel some drugs, play the fox. My doctor said to me: "Cholesterol started to go up, let’s try another drug." But I understood that there was no drug simply, so it would be better to tell the truth. That credibility was severely impeached. If there is no trust, there is more risk that a person will quit therapy.

Then we suffered financially, we were avoided as a "troubled organization", which "causes problems". Fortunately, over time the situation has changed. We really understand that we cannot solve the problem without a state. We cooperate. I’m sure that our struggle was not for nothing. Everyone understands that it is better with us in a good way, moving to avoid critical situations. After all, we can do otherwise. Treatment is not bad in Kaliningrad nowadays, unlike some regions. The same is with the analyses.

All these years, we have been working with people in prisons, in prison hospitals, with those who are convicted or released, and some have sat again. They don’t usually come to us the first week after their release. They appear when all the deadlines for registration are missed, and the pills are over. When they get into some unpleasant situations and when problems arise. It’s clear: people have lived in isolation for a long time, they want to relax, hang out, recover. It’s difficult to do in Russia, because there is no help from the state, and problems overtake quickly.

A girl was released a year and a half ago., she met a beau in prison, he had been still serving his sentence. Her child stayed with her aunt in a village. The girl’s main goal was to take her son for herself, but she had no registration, she had nowhere to go at all. She tried to contact a social house to get temporary registration. She lasted for three days, then had left. It is difficult after the colony to live in a regime institution.

She applied for unemployment. There she was asked for residence permit. There was no money to register. There was impossible to receive financial assistance from the region without having a registration. She had even no money to go to her baby. She was lucky that she was got on treatment, which was also difficult to get without registration.

She earned her first money miraculously, bought toys and went to her son. She was able to get a baby only after she got married. She went to prison to marry that man. Then her husband gave her a flat registration. Now she is dependent on him, he runs things around. How much she has experienced since that time. And always the same thing — dashing with her forehead against the wall. I’d fail on the way long ago…

Here are a few recent cases that show the horror of the prison and judicial systems. This is all happening now, we are conducting these cases. I look at such savagery when I go to the courts, and I realize that little changed in the past fifteen years.

In addition to HIV, the third progressive stage of cancer was, with metastases, matrilineal. She should have been released, in the true manner. And they didn’t tell her anything about the diagnosis, took her away and operated on in the hospital. Everything was cut out, absolutely everything, to the root. I read medical records. I was shocked.

They cut out and sewed her straight up again. She feels badly after that. She hasn’t had any tests for two years, even a doctor hasn’t examined her. The court has already gone to the second round. She has done an ultrasound — there are bad growths in the liver, and we still don’t know the full story. The FPS authorities refuse to release her. They say that she is healthy, so let her sit. At the same time, all standards of oncology treatment are violated. All this drags on long, the sick woman is suffering in prison.

In the fall there was a case of a pregnant woman. High viral load, pregnancy. And they dragged it all in the courts, just not to let her out. The first time she applied herself, but she was refused. I was sure that we would get her out: both HIV rates were very bad and there was the threat to a child life. The thing I couldn’t get my head round was why a person in such condition was kept in prison.

On the screen there’s a pregnant woman, she is about to drop. She is in a small cage, in a "glass". Her robe is too tight. There are no clothes for pregnant women. At this time the judge is torturing me why I have come. And he removes me from the hall without allowing me to stay as a public defender. Then the woman has written a complaint, but they’ve been dragging on. All in all, she has given birth in prison. The parents of the child’s father don’t know about the virus, and it is not clear what kind of control the child will have.

Now I go to the court of a man with HIV and Type One diabetes. They don’t even have sugar test strips in the cell. And insulin is given by a doctor. To take him to the doctor, you have to call the warden every time. He asks, and they answer him: "Will you get off, we are having lunch." He has already fallen three times without insulin. He cannot determine sugar without test strips. He says that when he feels very badly, on the verge of swooning, he asks to take him to a doctor. I say: "You know, once you are late — and that will be the end". However, there’s nothing we can do about it, people are threatened with their lives every day. Also, prison insulin doesn’t work for him. This system is completely hopeless.

Here is another case on the death of a convicted woman in 2018. We conducted her case for more than a year, and she was refused release. And she had not just HIV. She was not an old woman yet. She felt badly, we had been "bombing" all the instances for a year. Then the medical Commission of the Federal Penal System recognized her completely healthy, and the court refused release. She died exactly in a month of those diseases which she was recognized as "healthy" for: AIDS, associated diseases, serious liver damage. That was a direct testimony to the release.

We will bring this case to the end, although litigation with the Federal Penal System is always difficult, and in death cases it’s even more difficult. For example, it became clear from the medical reports that she was vaccinated, being in a such half-dead state, practically without any immunity. And maybe she died of it. They probably took her in an ordinary paddy wagon. That could be a death trick for her.

Today, the epidemic has moved beyond small groups (drug users, sex workers, men who have sex with men), now everything is at risk. Kaliningrad is ahead of many regions, and we have more than 80 percent of HIV cases (sexual transmission). We are visited by ordinary people who are not used to going to doctors. They lived like everyone else: a work, a family, children. And then, boom, HIV. So, fears, rejection, unwillingness to be treated. We are getting used to work with them now.

These "well-off" HIV people often stigmatize others: "We are not like bad people, we are good, and not like these drug addicts, cons, hookers, gays". This division exists, and it is very noticeable, it is very felt. They need a different kind of counseling, not like "What's up, bro? When were you 'in the house'?" Now it is about families, children and so on. This is a new challenge, very difficult, but interesting.

As a consultant, I've consulted thousands of people. The minimum is two people a day. But now social networks and instant messengers are added, people constantly write there. It happens that the phone is hot all day long. And the questions are completely different. How to transport drugs across the border during vacations? What if vaccination is arranged at work? Is it permitted to kiss an icon in the church, having HIV?

It's not really a job. Of course, when you have become a professional, you understand that you deserve to get money, because you have to earn a living. But there's still altruism – fifty–fifty approximately. There is a long-standing activism in Kaliningrad, we were affected by HIV very early. The idea has been passed down from generation to generation. But now altruism is not so popular among HIV service organizations. Most of them need money first.

We decided that we wouldn't do it simply for money. It's more important to see the benefit of the project, believe in it. We sometimes run out of money, but I know no one will out. Everybody will defend the interests of HIV-positive anyway, paid it or not. This is very encouraging. "Burnout" is always in our work. I've been through "burn out" several times. I felt exhausted, I said: "That's all, I'm a pile of ash. Leave me alone". After a large project we usually take a pause for a while, stop submitting applications. And the employees understand me. It's hard without money, though. Well, many of us have disability pensions and benefits. In a few months we usually come to life and continue working.

But how to spread the workload? The bell rings and you have to do something urgently. You interrupt everything and go to the region. Now this guy is being examined in the hospital. We are preparing documents to put him in a home for the disabled. As it turned out, he has neither passport nor registration. Cooperation with the state helps in such cases.

There are many such cases in our work. The city is small, and there is a lot of work. According to statistics, six and a half thousand people are infected. We also deal with tuberculosis and hepatitis. We can’t take all of them under our control, sometimes we refuse them if it’s not a matter of life and death. How many years we have been working intensively and the quantity of wards hasn’t decreased. My dream that everyone is doing well hasn’t realized yet. We continue to receive phone calls…

Twenty percent of women in Russian prisons are HIV-positive. This is a real epidemic. Additional diseases are also detected, for example, hepatitis or tuberculosis.

In many ways, this situation is due to the fact that instead of rehabilitating drug addicts, they are imprisoned. Among both men and women, "narcotic" articles are the most common. Often these are long terms. For example, for social sales they are sentenced for five, eight, even ten years. Our heroine Svetlana was "framed" by another drug user, who was apparently promised that she would not be imprisoned. Someone in security institutions received a "tick" for the distributor’s capture statistics. And the person was incarcerated for a long time.

This policy leads to the fact that about forty percent of serving sentences women are sitting on "narcotic" articles: either profiling or accompanying. The result is that every fifth woman is HIV-positive. Taxpayers maintain prisons, guards, investigators, and judges. It would be much more effective to direct this money to rehabilitation centers and programs for drug addicts.

The second problem is prison medicine. This is insufficient provision of qualified medical personnel and the necessary medicines. It happens that the treatment is chosen incorrectly. Even so it is prescribed correctly, it is uncertain whether drug curing will be provided without interruptions.

When a person is in a colony, sometimes the only specialist there is a psychiatrist-narcologist. An infectious disease physician appears irregularly, it is difficult to take tests, all this affects the timing. The system is very sparse, inflexible. In cities it is more or less acceptable, and in remote colonies, everything can last for many months. In a detention center certain drugs can be prescribed, but there are not the same in a colony, or they interrupt treatment. Therapy sometimes is interrupted for six months or even for a year. Usually they buy the cheapest drugs, which often have side effects. For example, cheap insulin is bad for many people with diabetes, because it doesn’t work or has powerful side effects.

The ECHR decision, which we are writing about in this project, shows that a woman with HIV hadn’t been receiving treatment for more than four years and she couldn’t take tests. Unfortunately, prisoners are paying with their health and lives for the poor state of prison health care.

When I was a member of the PMC of St. Petersburg, there were interruptions in the drug purchase, sometimes they were delayed for a year. That was usually due to a lack of adequate funding. Moreover, the interruptions were not only in HIV therapy, but also in insulin. Once I came to the hospital where people with diabetes were. But… insulin was over in the colony. The prison doctor decided, that he didn’t want to "sit", so he sent them to the hospital to avoid insulin shocks. Fortunately, there were free places in the hospital. ARVT therapy is not considered to be urgent, a person won’t go into a coma, but the virus produces resistance, it’s necessary to change drugs.

I believe that the prison population can be reduced by half at least without problems for society. Many of them can be provided by a non-custodial measure, they are not dangerous to society. It is better to direct the saved funds to rehabilitation and resocialization, providing work social projects, housing, etc. People are just not used to live at large, cannot get a job (some of them are forced to do sex work, this is also an HIV risk group), no one needs them here, they are branded a "criminal". Therefore, the risk of relapse is so high in Russia.

38 years old Natalia has been living with HIV for 20 years. A total prison term is 7.5 years

I learnt that I was had HIV when I was in the Vologda colony. I was 18 years old. In 2000, there hadn’t been treatment yet. When I found out the diagnosis, I felt doomed. I was living in the moment and I didn’t know what would happen the next day.

What fate was waiting for us then? I remember there was a girl. She was suffering from the last stage of AIDS, and she was just "written off". Doctors could do nothing. In order to keep her from dying in the colony, so that they could keep their stats, she was released. Parents came to take her home. She died on the way, even before she got home.

How did I live in the colony? There were difficulties. I remember that in 2001 my upper teeth were inflamed and I had a bad toothache. I had two fluxes, but the doctors refused receiving me because of the HIV status. They were afraid. I was suffering from intense pain, no one in the squad section could sleep at nights because of me. I filed a complaint to the prosecutor’s office. The doctor come and simply ripped my teeth out. Then, I remember, I was even happy, because I was so tired of pain.

Generally, I was treated well by the squad girls, but the attitude of the colony employees was terrible, because of my HIV status. They shunned at most. It was impossible to get to the doctors. Even then, everything was in common in our colony: we ate together, there was no division, people with HIV were not separated.

I was in many colonies. Everywhere was known about HIV, but nowhere I got treatment, except for the last colony in Ivanovo, in 2016. Then I had pneumonia with complications: I blinded in one eye, there were femoral neck problems. Only after that I was prescribed therapy, but the drugs weren’t good enough. There were a lot of bad side effects.

I served a year in Germany, Frankfurt. Of course, there’s a big difference, like day and night. Their single cells are like rooms, they let out for day walks, there is a common area and kitchen. There is an opportunity to learn. You can master any foreign language in prison you want, for example, English or German. The food there is much better. I remember there was a Christmas dinner with a Christmas turkey.

I gave birth to a healthy child not long ago. She will be 1.5 years old soon. I took special therapy for pregnant women from the AIDS center. Now the child and I are seeing a doctor, taking tests. If I hadn’t been free, it might not have ended so well for me and for my daughter.

Lena, convicted under article 228

The first time I tried drugs, I was nineteen, in a company. It was the thing to do then. But I didn’t like it, especially the condition the next day. I started taking drugs constantly since 2004, when I got married. My husband was a drug addict, we began to practice together. So, I got involved оn the base of "family contract".

In 2018, my friend and I took the HIV test in a medical bus on the street, the result was negative. I learned that I am HIV-positive a year ago, in 2019, when I underwent medical examination in prison. Two weeks later, a therapist called me and said that I was HIV infected. He said that sometimes an infectious disease physician comes, I’ll take tests and get advice from him.

I reacted that calmly, philosophically: that just can’t be helped. Anyway, I have to live with it. I don’t understand how I’ve got infected. I always used disposable syringes and I had a constant partner. My relatives still don’t know. I’m keeping things from them. I protect my loved ones. And I’m talking to you, turning away. Not everyone wants to open HIV status, because many people treat us like lepers. When I build a personal life, of course, it will be necessary to tell a loved one.

I got tested in two or three months. The infectious disease physician came until three months after that. He said that I can start treatment, but I don’t have to do it yet. If I start treatment, I need to do it all the time, without interruptions. Since I have a short term, he recommended starting therapy after release, because they’re not stable with their meds. He advised me to go to an AIDS center, get examined and then start treatment. That’s why I gave up therapy.

I consulted with the girls from the colony, they also said that the treatment was not very good. Tablets are often changed. The constant change of treatment regimens reflects poorly on the picture of the disease. There were interruptions. Some took bed rest due to "side effects". They felt not very well.

I knew thirteen girls with HIV out of a hundred and thirty people from two detachments. Ten percent, it comes out. Due to instability with the drugs supply, almost half of them refused therapy, although many have lived with the diagnosis for 5−6 years. One girl was pregnant. Her relatives sent her pills and special vitamins for pregnant women diagnosed HIV (+). There were no good meds in the colony.

It should be understood that about 75% of women in the prisons are young, they are between 20 and 35 years old. Some of them end up into detention centers being pregnant or having small children. Nowadays there are 412 children under 3 years old in children’s homes in colonies. In addition to the general problems which we have written extensively about in the investigations "Refuse breastfeeding" (RUS) and "Camera for the newborn" (ENG), there are difficulties there.

Seeing as one in five women in the prison system is HIV-positive, today at least 80 prison babies are at risk. Based on the results of the questionnaire I conducted while working at the Public Monitoring Commission of St. Petersburg, about a third of all pregnant women in the pre-trial detention centers were HIV-positive.

Thus, interruptions in drugs and poor quality of therapy harm both mothers and their children. For example, in one of the colonies a woman with HIV couldn’t take the prescribed therapy because of side effects. Her hemoglobin was dropping sharply, she was losing. As a result, the woman gave birth to an HIV-positive child.

Natasha, several sentences for different articles

I had a few short sentences. I was serving in my native region, in the Kaliningrad region. Released a month ago, memories are still fresh.

The first time I got into prison, I thought I was going crazy. That’s for several years, not for several days, as before I was detained. I was shocked, everything was new, wild. It was impossible just lying on a mattress, I jumped up every time. The first time I sat on article 228, I had a strong drug addiction. The police treated me well.

I can’t say that I was mocked or bullied in a pre-trial detention center. Most probably, they were indifferent. I had a severe withdrawal syndrome. Of course, no drugs were given to remove it. As they said: "We provide main treatment — claustrophobia and therapeutic starvation". I was in the detention center for six months.

I learned that I am HIV positive at the age of 19. I was just starting out taking drugs and somehow fell into the wave, when a lot of people in our region had become infected. So, I have more experience living with HIV than without it.

I went to the clinic to take tests, then I was asked to take them again, as if the first ones were lost. Later, a paper was sent to the mailbox: I was invited to an infectious disease hospital. Then there wasn’t a separate HIV facility yet. I went there with my father. When I entered and a saw poster in the corridor "HIV is not a sentence", I immediately understood everything, but my dad couldn’t realize — it was a shock for him. I was invited to a psychologist and a diagnosis was announced there.

To tell in short, my mom was hysterical that I would never be a mother and die soon. Then there was little information about HIV, so I had been like a plague. There was a younger child in the family. Mom separated the dishes, hygiene items. In general, I was separated, everyone kept a distance from me. Over time, when more information became available, my towels and dishes returned to their old places.

In 2013, in the colony, I began to take therapy for the first time. I took tests for viral load, immunity, and I was offered to start treatment. But it didn’t go, I gave up treatment several times. The drugs I was prescribed were very severe and had great side effects: allergic reactions, an aggravated sense of taste and smell. And since we were six together, it was very uncomfortable. Let’s say the smell of food caused my vomiting reflex. I couldn’t ban cellmates from eating.

I was given extra food. Two pieces of butter, although it was probably margarine, an egg in a day, one hundred grams of cottage cheese, one hundred grams of juice or milk. Well, a piece of chicken was given bigger than usual. For example, half a chicken hip. Four of the six people in our cell were HIV positive. The way I was treated was normal, because healthy girls were drug users. They understood that they were just lucky, they might have been infected.

The second time I got caught under another article. When you use, you are likely to get caught either under a drug article, or for theft, robbery, or some kind of fraud. There are different ways of getting money fast.

Twice I went to rehab centers. One was based on occupational therapy, the other was with a religious bias. But then I went back to use. Now I’m tired of this, I don’t want to end up in prison anymore. There is personal life and work collapsing. All spheres of life are destroyed.

I have got a teenage daughter. At first, my mother concealed everything about me from her. Now she knows that I’m either in rehab or in prison. It’s important to be honest. My daughter can tell me more now than I shared with my parents. You can understand everything. I don’t decide for her, I don’t scold, I don’t press. I want her to decide what she is going to be.

I have a husband. He’s in prison, long term. He is very principled: "If I submit, I won’t respect myself". We don’t have hierarchy, concepts in female prisons as it is on the male zone.

Everything is bad with medicine in prisons. There are not enough specialists. No dermatologist, no oculist. There are many prisoners with impaired eyesight, but it is a big problem just getting glasses. If there is a problem with hearing, there are neither otolaryngologists nor audiologists.

I arrived to prison with a certain treatment plan which I was prescribed at the AIDS center. My pill stash is running a little low, and I’m told: "We cannot give you such drugs, only after an infectious disease consultation". I waited 4 months for the infectious disease. Then he prescribed me the same scheme. There was a gap of 4 months, during that time the virus had already developed resistance.

There were no drugs in the medical unit. There was a period when I was following a prescribed therapy scheme, but after my release the doctor at the AIDS center said: "What a bunch of pills"! They gave me what was available there, not prescribed drugs. It wasn’t appropriate for a comprehensive treatment at all.

Inna, convicted under article 228

I have a negative HIV status, but my husband had HIV. At first, he was a good friend of mine, we worked together, talked. I always knew about his positive status. The fact didn’t stop me to marrying him. First of all, he was a very good person and the disease didn’t make him worse. There are so many ways to protect yourself, this isn’t a problem at all. I have friends and relatives with HIV. This is definitely not the end of life.

We had lived together for five years. Then they put me in prison for article 228, I was given a two-year bit. I got my paycheck and went to buy a "relax". I was caught. My husband felt very upset. He died in four months. He was only forty-five.

I think that people who use drugs, especially recently started ones, should be treated. They should be helped, not jailed. Drug addiction is a disease. I haven’t used for three years, but I know that the disease hasn’t gone away. Every day is a struggle with yourself, a search for new goals, advantages in something else, not in use.

Instead of catching those who sell, who have money, and who can buy off, they catch ordinary drug addicts who are ill without a dose, then put them in jail. And people come out of prison more fiercely. Someone acquires criminal tendencies, learns to steal. Prison doesn’t make anyone better.

Fortunately, I was not deprived of my parental rights, my daughter stayed with my mother. Otherwise I would have gone mad. I have seen many situations when children are taken away under the patronage, or they placed in a foster care. New parents often forbid them to see mothers. Women go crazy. It is difficult to solve any issue in a closed institution. For example, with guardians. You can’t go anywhere, you can’t call, you can’t write, you can’t decide anything. Everything is at the discretion of the supervising authority, and every time you face a setback.

There are very cruel people in this system. Nobody wants you there. Very few people help. I can’t say anything positive about our prisons. I was lucky: I used drugs irregularly, time to time, so there was no strong addiction or withdrawal, others climbed the wall. The medicine there is terrible, there is no proper treatment. In order to receive aid, you must have a high temperature, under forty as minimum. No one pays attention until you die. Nobody wants you there. No one pays attention until you until you spit up blood. It’s better not be getting sick there.

Once after the bath, we were kicked outside for a check with our hair wet. Because of that, my facial nerve inflamed and my face was paralyzed. Ten days passed before I was examined by a doctor and prescribed treatment. And half of the drugs weren’t there. I got lucky, so to speak.

We knew all the girls who had HIV, there was no medical secrecy there. There is the only medical unit — nothing secret. Everyone can see who goes to therapy at a certain time.

I was working in the amber industry to take up time, doing processing for the products: selected, polished, split. The shift was eight hours a day, we sometimes had overtime work. They paid ridiculous money, about a thousand rubles a month. If you are paid one and a half thousand rubles, you are fabulously rich. I stopped smoking there, it’s a pity to spend my hard-earned money on cigarettes.

So, you’re out of prison, you don’t have any money, and you can’t get a job. And if the children are in foster homes, it is unrealistically difficult to pick them up and restore your rights. It’s a good thing that even before I was incarcerated, I found out about a mutual aid group for addicts. On the zone I thought about it, those memories gave me strength. I came here on the second day after release. I like to help people. For example, we feed the homeless. I’ve been coming here regularly for four months and many of them have become a family for me.

The area of my responsibility at the Public Monitoring Commission includes monitoring the right to health care in detention sites for HIV-positive people and people who use drugs.

If we talk about the Kaliningrad region, today HIV therapy, as a rule, is received by those who need it. But the quality of drugs, the provision of medicines and diagnosis are insufficient. Everything is not perfect in civil medicine, but I’d like the prisoners to have access to more extensive and high-quality care.

After release, the resumption of social connections is important. We have to support a person in time so that hasn’t broken the law again. Our experience shows that people can be useful to society. For example, someone helps feeding the homeless. There are other areas. It also works for everybody got probation. None of those who remain at large and participate in our activities, visit support groups haven’t got to prison in three years.

We’re escorting. First, together with a person, we draw up an individual plan, taking into account inclinations and needs. Then there is action training: with the help of the attendant people restore skills, solve problems, learn to overcome barriers.

A person needs to be constantly interested. In the way of formation, we come across very interesting creative people. An actor Matvey Matveev has recorded the stories of the guys they told about their lives, about their serving sentences. On their basis, a unique documentary performance "Diagnosis — the Article" was released. You know, even storage for personal use is punishable by law in our country, especially if it is a mix. It is important that the state doesn’t turn away from them. People need support, rehabilitation, not punishment.

Society’s attitude to drug addicts and people with HIV is complicated. They are discriminated against and stigmatized. We are trying to change this attitude, including through the arts. Viewers listen to stories, they can see that they that they are human beings with childhood, parents, feelings. A drug addict is not a defeated person, an HIV-positive is not a dead person walking. They are citizens like you and I who can bring benefits, whose lives are as well valued.

FPS statistics is a very touchy subject. The department manipulates the data as it pleases by presenting only those data to the public, that are profitable to show. Complete data on many aspects are hidden, it is almost impossible to get them. It's a very closed system and it must be changed.

For example, let's have a look at the number of HIV prisoners' data published on the FPS website in 2019. Data is presented in chart form by year:

The diagram shows that after 2016, the number of HIV prisoners in Russian prisons decreases from year to year: from 64.5 to 61.4 thousand people. I think this chart was published to demonstrate the "success" of prison medicine.

At the same time, we know that the HIV epidemic in Russia is developing year by year. Our country is in both absolute and relative indicators on the 1 place in Europe in the number of new infections (64.5 per 100 thousand people, 94,668 new cases — according to the results of 2019; for comparison, the average for EU countries in 2018 was 7.9, with a multi-year downward trend).

What is the reason for this "anomaly" in Russian prisons? If you look closely, you’ll find that the FPS gives data in absolute indicators. The total prison population has been declining annually: from more than 630 thousand to 563 in 2018. If you look at the percentage of prisoners with HIV, it turns out that it has increased from 10.2% to almost 11% over the three years. Of course, the FPS doesn’t talk about this.

So do a lot of other numbers. Correct data are seemingly given, but very selectively or with little regard for the context. This often distorts the overall picture to the opposite. Other data "pop up" at some point in the media, as it was with data on HIV women in the prison system last year, but the FPS website doesn’t provide any separate information on men’s and women’s prisons.

The same applies on mortality statistics. We can find out the general figures of deaths in the prisons, for example, from the report of the Chief Public Prosecutor of Russia in the State Duma. The breakdown for the reasons of deaths is hidden from society, the FPS doesn’t like to publish these figures. It is possible to learn something from closed sessions at relevant events, where members of the PMC are present, by requests of deputies or human rights commissioners, etc.

For example, we know that HIV infection ranked first (32%) among all the causes of prisoners' death in the years 2014 — 2016. According to the FPS, 1,193 people died of HIV infection and its complications in 2015, and 1092 in 2016. The last available figure (for 2018) is found in an interview of the main freelance infectious disease player of the FSIN to "Moskovsky Komsomolets" newspaper: 696 people. But we can’t quite rule out doubts that the numbers are "hidden" in other articles, such as deaths of related diseases (it is known that tuberculosis remains the leading cause of death among HIV people in Russia). We don’t know the actual figures to date.

Sometimes percentage data of the decrease in the number of deaths from certain causes flicker. Usually, the FPS brings to the public plane only those articles on which there is an improvement. For example, "HIV mortality decreased by 7%" and the rest is not published, but there can be deterioration. At times, improvements can be associated with a decrease in the total prison population, as it is shown above.

I believe that society should have access to fresh and complete statistics on what happens to people in closed institutions, including data related to health and treatment, as well as mortality from various causes and diseases.

Elena Paltseva was the first HIV-positive woman whose interests we represented in the European Court of Human Rights (ECHR). Our clients in such cases were men up to that point. Both prisoners with HIV-positive status face difficulties in our prison system. In the past, when I was a member of the Public monitoring Commission (PMC) in Chuvashia, we visited specialized detachments in a correctional facility. There were quite cramped conditions, additional restrictions were imposed, even in comparison with other prisoners. But even now, HIV is a difficult life for both men and women.

Initially, Elena lodged a complaint in 2015 on her own. We had learnt about her case at the stage of communication of the complaint, thanks to the ECHR official website information. Through the members of the Nizhny Novgorod Public Oversight Commission, we contacted her and offered our services for free. Since she didn’t have a representative, Elena agreed to issue a power of attorney.

Soon we received a large pile of about 500 pages of medical documents from the Federal Prison Service’s doctors. They claimed they allegedly treated her well, and there was no reason to complain about the lack of medical care. I don’t have special medical knowledge, so we applied to independent specialists in this field.

Our colleagues in Novosibirsk had prepared an objective infer on compliance with the standards of medical care for HIV infection and related diseases. As a result of the analysis of the documents submitted to the court by prison doctors, they were blown to smithereens.

The ECHR ruled in favor of Elena in 2018. The awarded compensation, 15 thousand euros, was received by her elderly mother by proxy.

Elena Paltseva didn't have access to the treatment that she needed. How typical is such a situation in Russia?

In the Federal penal system, much depends on two things in this regard: on those who manage the system of execution of sentences in a particular region, as well as on number of medical treatment and preventive care establishments in the region. These institutions deal with HIV-positive people and people with other diseases, such as tuberculosis.

If there are such institutions in the national area and there is an understanding of what they must be well positioned (doctors, medicines, etc.), respectively, they must be licensed to provide specialized care, then such assistance will be provided in these institutions at least. Because the situation with the provision of medical and even more specialized assistance in general and strict regime colonies still leaves much to be desired. Unfortunately, the system is arranged in such a way that doctors in uniform are often not guided by the interests of patients.

Due to the increase in the number of HIV-positive people in the Russian penitentiary system, the attitude of the prison administration towards them has changed in general. Detention in separate detachments and cells, isolation measures that were an additional manifestation of discrimination, are a thing of the past. General awareness of FPS employees has increased, and panic fears about HIV-positive people as "untouchable" have disappeared.

At the same time, the problem of providing qualified medical care for HIV-positive people in prisons remains very acute.

Firstly, this is due to the lack of staff, which is caused by the closure of the system. There are not enough prison doctors of their own, and civilian specialists, as a rule, are involved only in emergency cases — usually HIV doesn’t apply to them. Lack of infectious disease doctors and diagnostic staff, including the proper tests, leads to untimely start of treatment or large interruptions. This significantly violates established medical standards.

Secondly, there are problems with drug supply. Usually the cheapest drugs are bought that are not suitable for everyone, have strong side effects. Interruptions in public procurement of drugs and their delivery are not uncommon. As a result, the patient suffers from adherence to treatment, due to frequent changes in drugs and breaks in therapy — the virus often develops resistance to treatment regimens.

General underfunding leads to the fact that therapy is prescribed to only half of HIV patients ("therapy for life indications", when immunity is less than 350 protective cells CD-4, or in the presence of tuberculosis). Current recommendations of the World Health Organization prescribe the treatment of all those who have HIV infection — which is also an additional means of preventing the spread of the epidemic.

The lack of quality and timely medical care in the prisons lead to health problems and high mortality from the effects of HIV infection. In the case of pregnant women or women with infants, these problems may further endanger the health of children.

What should we do with it?

First of all, it is necessary to reduce the prison population by humanizing alternative punishments for people who do not pose a social danger, and decriminalizing certain articles. This will simultaneously increase the availability of the remaining prisoners with doctors and medicines.

A greater openness of the prison system is needed: facilitating prisoners' access to the resources of civil medicine and specialized non-profit organizations.