Denis's Last Summer. How and Why People Die of AIDS in Russian Prisons
Prison medicine in Russia is a torture of its own. With HIV, and particularly with many people refusing to take treatment because of its unbearable side effects in prison conditions, even tuberculosis, the most widespread disease in Russian "dungeons", can be terminal. AIDS.CENTER publishes the story of Denis. He was sentenced to two years in prison for stealing a welding machine, but was released on parole: the so-called "double" turned into a death sentence for the young man.
"Please, wait a bit, we'll come out in a second," Angela says, opening the door. It's like a kindergarten behind the door: six children, two – hers and Denis's, and the other four – her older sister's. They rent an apartment together in the quiet centre of Polevsky, a small town in the Sverdlovsk Region. It is cheaper that way.
Two minutes later, Angela comes outside. She leads her husband by holding his hand, helps him get down the doorsteps, and then tries to seat him down on a bench. Denis remains standing. He keeps silent, looking away. Denis is 32. He has HIV that has progressed to AIDS, as well as a bunch of related diseases: encephalitis, tuberculosis, chronic hepatitis, etc. Doctors say that Denis may not survive this summer. Although it was the same doctors who earlier claimed that he wouldn't live until the beginning of it. This is why Angela takes what the doctors say with a pinch of salt, and has been fighting for her husband and the father of their children's life for almost half a year now. Their daughter is two and a half, and their son is six months old.
"If they transfer him to a penitentiary medical facility, he'll kick the bucket"
Angela and Denis met five years ago. In 2015, they got married, and two years later, they welcomed their daughter. Denis didn't have a chance to pick up his wife from maternity hospital. Two weeks before their child was born, he was sentenced to two years in a high-security prison. "It was a stupid story," Angela recalls. "We had a fight, he got drunk, and stole a welding machine from a neighbour's garage just out of spite. When he came back in the morning, he had no idea why he had done that."
As he already had previous convictions for theft and robbery, he was given a two-year sentence due for repeated offense. There was also a "smoldering" case under Article No. 318 of the Criminal Code: Denis had hit a police officer on the job. A check-up in prison showed that Denis had an extremely low immune status. There were only 45 cells. However, he felt fine. An infectious disease doctor prescribed antiretroviral therapy, but Denis refused to take the drugs due to their side effects.
He was diagnosed with HIV back in 1999. During the years of living with the virus, he only took therapy occasionally when he was in jail. He would start spontaneously and give up in the same way, because he felt fine without the pills, whereas taking them made him feel not so well.
HIV infection is a slowly progressing infectious disease caused by the human immunodeficiency virus. By replicating, HIV infects immune system cells called CD4+ T cells.
An immune status test shows how many of these cells are currently in the body. In a healthy person, their number normally varies from 500 to 1200.
If a person living with HIV either does not take antiretroviral therapy, or it does not work, then the number of cells will decrease, because the virus replicates in them. When the cell number is less than 200, the risk of AIDS-related diseases becomes high. If the person develops them, they are diagnosed with AIDS.
In May 2018, doctors detected a dark spot in Denis's right lung and sent him to a specialised penitentiary medical facility in Nizhny Tagil. According to his wife, it was then that he started experiencing serious health problems.
"We were told from the very beginning: 'If they transfer him to a penitentiary medical facility, he'll kick the bucket'." In autumn, he started suffering from headaches. The attacks were so severe that he could not even talk on the phone. I would call him, but as soon as the children would start screaming and crying, he would immediately hang up. He would be given injections of Dimedrol and metamizole before bedtime. Only then would he fall asleep," recalls Angela.
Denis is swirling his right hand in the air. "Wanna smoke?" Angela asks. And answers herself: "Yes, just a sec." She takes a cigarette from her pocket, lights it up, and helps Denis smoke. In the same way, she helps him eat, get dressed, or go to the toilet.
"That's the ongoing guessing game we have here. He does not say anything, you know. Well, he speaks, but everything is off the point," Angela complains. "Recently, he even scared the children. I was running errands trying to obtain medical notes to apply for Denis's disability benefits. Meanwhile, he undressed and wandered completely naked around the apartment. Sometimes, he suddenly starts getting nervous, screaming, and kicking the furniture. He has never been so aggressive before. We visited a psychiatrist, who told us that the processes in his brain are already irreversible. Some sort of a liquid called lysate has built up there. His brain has rather melted. Meaning my husband has actually become like my third child now."
Denis got worse in November 2018. He applied for parole on the 30th, but his request was rejected. At that moment, his wife was giving birth to their son. On New Year's Eve, some guys from the penitentiary medical facility called Angela and told her that her husband had become paralysed.
"Maybe it was a stroke or something else. How do I know?.. During the holidays, I never stopped trying to reach the facility's authorities, but they told me to call again after the 9th of January. As soon as the holidays ended, I went there myself. I explained everything, and told them we had two small children," she recalls.
At that time, the man was still able to walk. However, on January 18, when the court ordered "immediate release", Denis, according to his wife, was already too weak to stand. He had to be transported in a special car, which was allocated by the Federal Penitentiary Service.
Denis was brought to the tuberculosis hospital in Nizhny Tagil with severe tuberculosis of the right lung and stage-4 HIV. The tests showed a viral load of 26 thousand copies, while the immune status was only two cells. With his immune system almost "dead", Denis developed a bunch of opportunistic diseases.
According to Angela, the doctors' prognosis was not good. Everyone thought that he would not get back on his feet ever again: "I heard one of the doctors saying via speakerphone that he would not live ten days." But Denis managed to get back on his feet. The problems with speech and behaviour started later, at home, when he began taking drugs for tuberculosis. Today, the man cannot even put on a T-shirt himself, and no longer recognises his own children.
Every day is like a groundhog day for Angela now. From 8 a.m. to 8:30 a.m., she has to administer drugs to her husband, as well as feed him and the children. From 10 a.m. to 11 a.m., she takes them all out for a walk. Afterwards, there is cooking, dinner and pills again. Angela admits that she is getting tired of everything. Besides, there is absolutely no time left for the children. She even has no time to obtain the documents needed to enroll their elder daughter in kindergarten.
She is now trying to put her husband in a hospice. So far, they have not accepted him. Another option is a psychiatric clinic, but you cannot get there without a registered disability. Denis still cannot get a disability category. Angela keeps listing all her attempts to help her husband. She has heaps of records, medical notes, and test results: "What else can I do? After all, he is my husband and the father of my children. I saw my sister's husband dying. The same story — HIV plus tuberculosis, only that he eventually died of liver cirrhosis. He was also young. When I visited my husband in prison, I saw staff workers carrying out the bodies of those like him. One prisoner had eaten his own lips in pain."
Several organisations are helping Angela place Denis in a medical facility, including "Rus' sidyashchaya", an NGO that provides legal and humanitarian aid to convicted people and their families. Maria Chashchilova, who is a lawyer at the organisation, explains that the woman herself would hardly want to engage in legal battle with the Federal Penitentiary Service now and demand to find those responsible for what happened. She is too exhausted.
Medicine in Prison
There are also other NGOs that are helping Angela obtain medical notes, go for tests and go through all the medical procedures. Some of them, like MRI, are paid services, but the family does not have money for them. Marina Chukavina, an expert lawyer working for the NGO "Interregional Centre for Human Rights" in Yekaterinburg, is handling the legal aspects of the issue. She learnt about Denis's story in January 2019, when she decided to look into the reasons for the high mortality of prisoners with HIV at the Penitentiary Medical Facility No. 51. In December 2018, six HIV-positive people died there.
"When Denis was urgently released by court order, everyone would tell us: 'Don't waste your time on him. It's 99% certain that he will not survive, so don't even think about any treatment'," says Marina.
The human rights activist has faith in the office of the commissioner for human rights hoping that they will be able to place Denis in a psychiatric residential care facility. Besides, she expects the General Directorate of the Federal Penitentiary Service in the Sverdlovsk Region to finally close the job openings for infectious disease specialists in prisons. She believes that if Denis had been given proper help on time, he could have been saved. But there is a critical lack of doctors at the prison where Denis was held, and the present ones have a huge workload.
"Even if Denis made a voluntary decision to refuse treatment, it only means that no one explained to him the severity of his condition. We met prisoners with HIV who had not undergone medical check-ups for years," the human rights activist explains, and shows the response from the General Directorate of the Federal Penitentiary Service to a request, in which it is written in black and white: the position of an infectious disease specialist in the Penitentiary Medical Facility No. 51 is vacant, the headhunting is underway, and consulting assistance is now provided by the main freelance specialist in infectious diseases and HIV.
In the first five months of this year, the Federal Penitentiary Service of the Sverdlovsk Region released 72 people for medical reasons. This is almost as many as the whole of last year. People often find out about their positive HIV status only after being placed behind bars. Many of them already have severe stages, complicated by tuberculosis or hepatitis. Some have no medical record. All the documents are created from scratch by specialists working with them in prison.
"According to doctors, Denis may not survive this summer. It was the doctors too who claimed that he wouldn't live until the beginning of it"
In April 2019, the Federal Penitentiary Service presented the last statistics on the number of prisoners with HIV in Russia. The report says that there were 61,417 HIV-positive people in the country's penitentiary facilities as of January 1, 2019. This is about 7% of all the people with HIV in Russia. According to the agency, one out of ten male prisoners and one out of five female prisoners have HIV.
Notably, the same report says that only every second affected person receives treatment, which is an extremely low rate. Especially considering the international 90-90-90 targets, according to which 90% of HIV-positive people know their statuses, 90% of those diagnosed with HIV receive antiretroviral therapy, and 90% of those receiving it have an undetectable viral load.
There are several reasons for this. The first is insufficient funding and untimely drugs delivery to prisoners. As a result, this spring the agency began to independently purchase diagnostic test kits and antiretroviral drugs for patients with HIV.
Moreover, in a comment to AIDS.CENTER, the regional office of the Federal Penitentiary Service admits that they do not have enough doctors. "Yes, we have a personnel gap, just like we have it in medicine in general," says Alexander Levchenko, the head of the press office of the Federal Penitentiary Service in the Sverdlovsk Region. "In our case, the situation is aggravated by the fact that many prisons are located in remote settlements such us Tavda or Sosva. For example, the Penitentiary Medical Facility No. 58 was shut down because it was located too far away. There are two facilities left — No. 51 and No. 23. We collaborate with AIDS centres, take people to consultations and procedures, when necessary, although these are massive expenses for the state. During the last year, we provided this kind of help to over 400 people."
At the same time, representatives of the agency insist that they have no problems with the drugs. According to Elena Tishchenko, the deputy chairperson of the public council at the Federal Penitentiary Service in the Sverdlovsk Region, "there is a number of cases" in which convicts themselves refuse to get treatment, and no one has the right to force them to do that. "Some do not take pills because they do not have enough information about the disease. And some people do it to escape work duties. Prison is a reflection of the state. It has the same problems we have in our society," she adds. As the lawyer of "Rus' sidyashchaya" notes, people in jail most often complain about problems with medicine: "The situation with doctors is frustrating everywhere. There are hardly any specialists at any penitentiary or medical penitentiary facility. They purchase pills in insufficient quantities and without regard to different treatment regimes."
Chashchilova mentions the problems with testing among the reasons for why not all HIV-positive people behind the bars receive vital treatment. For instance, prison doctors do not take a test and thus fail to find out that the person has HIV. Or the investigator fails to find that out during the proceedings. In addition, the so-called window period is often not taken into account. This period between HIV infection and the point when antibodies to the virus appear, by which it can be understood that a person is sick, can last up to three months. This means that the test may show a negative result when the virus already exists in the body. No one is retested.
In her practice, prisoners rarely refuse treatment. These are rather individual cases. However, if they are put together, the number will be large. "There is no single answer to why people refuse therapy," Maria summarises. "There are probably those who try to dodge work in this way, because one cannot work for 18-20 hours and have time for everything: meals, hygiene, treatment, etc. But there were people who wrote to me that drugs cause such a severe weakness that even walking is hard. After all, no one there will bother to find individualised treatment regimens. Everyone is prescribed the same one, but each body reacts to it differently. Meanwhile, in prison, even ordinary diarrhea is a great problem."
Mark Aganin, an infectious disease specialist, believes that the stressful situation in which prisoners find themselves also affects the health of people with HIV. "People get somewhere against their will, they are constantly forced to do something," he explains. "No wonder, they tend to demonise prison, saying things like 'they've worn me down there'. Or there is another myth that 'the therapy did not suit me' or 'they did not pick the right treatment for me.' Unfortunately, there may be side effects, but any treatment is better than no treatment at all. This should be explained to people."
For Vera Kovalenko, the New Life fund director who works with the Federal Penitentiary Service and helps prisoners with HIV, Denis's story illustrates a vast range of problems. "Denis found out he had HIV in 1999. He was aware of his status, and still he did not take drugs. Therefore, no one could motivate him to receive treatment," Kovalenko explains. "So the story started there, back in 1999, when he failed to accept his diagnosis, and no one helped him with that. Apparently, the Federal Penitentiary Service are just reaping the harvest of that failure. Such 'oversights' of the healthcare system emerge later somewhere in pre-trial detention centres and then die in prisons."
She sees the way out in creating a single roadmap that all agencies and services would be integrated into. Cooperation could reduce failures in logistics and patient transfers from one facility to another. These procedures now take too much time, and not everyone has it. Denis does not have it anymore. Social workers from the New Life fund are now helping Angela the most. For example, they take Denis for medical examinations. It seems to be a simple and ordinary task, still, there is no one to help with it. After being released on parole due to medical reasons, people often come under the care of their families who have neither money, nor strength and knowledge to provide help.
"Even if Denis made a voluntary decision to refuse treatment, it only means that no one explained to him the severity of his condition. We met prisoners with HIV who had not undergone medical check-ups for years"
A few days ago, another guy with HIV, who had been released on parole for medical reasons, died at the hospital. They didn't have a chance to help him. Just like in case of Denis, his condition was already critical. Marina Chukavina is certain that it would be much easier for Angela and other people, whose relatives have been released for medical reasons, to take care of them, if the Federal Penitentiary Service registered a disability status when releasing them. After all, every prisoner undergoes a thorough medical check-up in any case before being released due to a disease.
However, the regional office of the Federal Penitentiary Service stated that they have such a practice, and many people are released with a confirmed disability category. According to them, Denis was not assigned a disability category only because he had to be urgently transferred from the penitentiary medical facility to a tuberculosis hospital. Commenting on the story of Denis, Angelika Podymova, the chief physician of the Sverdlovsk Regional AIDS Centre notes that a person should start taking antiretroviral therapy from the moment of being diagnosed and get the treatment regardless of whether they are serving a sentence or not. As for social aid, introducing it requires adjustments to the current legislation, both at the federal and regional levels.
The chief physician and human rights activists are convinced that even though he was released according to Decree No. 54 regulating the medical examination of convicts up for release due to medical reasons, Denis should have been assigned a disability category right there, in prison, "since it takes a lot of examinations to assign it, and it would be easier to conduct them before the release." This would provide benefits and a package of social and medical services that people in severe conditions need badly.
But the problem has to do with regulatory documents. Podymova explains that there is Order No. 216 issued by the Ministry of Health that states that HIV is a contraindication for receiving social services in the in-patient form. That is why Denis now cannot be admitted to an appropriate facility. "However, we cannot recognise him as a person in need of social care until HIV is introduced in Federal Law No. 442 (Fundamentals of Social Care Provision to the Citizens of the Russian Federation). These are three documents of federal importance. They need to be amended to help those who are released in severe condition without a pension or allowance, and possibly without a place to live." According to Podymova, routing of patients for in-hospital treatment is legislated in the Sverdlovsk Region. Besides, a similar project for palliative patients has already been prepared.
While officials deal with documents and regulations, Denis is followed up in the infectious diseases office of his city, receives treatment for tuberculosis, HIV drugs (Tenofovir, Lamivudine and Dolutegravir), goes through medical examinations, as well as obtains preventive treatment for opportunistic diseases.
Meanwhile, Angela runs from office to office, trying to obtain medical notes and apply for a disability category for Denis to relieve the financial burden to at least some extent. This bustle has almost made her forget about her own health. Angela also has HIV. Having got completely immersed in the problems of her husband, she forgot about her treatment for a while, until social activists reminded her of the responsibility for herself and the lives of her children, who, thanks to antiretroviral therapy, were born healthy.