"The caught virus": HIV treatment shortage in the colony

Natalia (she asked to call her by this name) postponed a long visit with her son until the very last moment. It was hard for her to look at him: during the last couple of years, he became somber, aggressive. He lost weight, began to move in a strange manner — as if on hinges. It was impossible to talk to him. But still, he is her son, she felt she had to see him. She decided to go for one day, instead of the allowed three.

"I came there and didn't recognize him, — says Natalia. — My kind and happy boy was back, just as he had been before drugs, before his diagnosis and prison. He gained his weight back, became cheerful, started smiling again. We laughed all the time, like in his childhood. I was so sorry I only requested a three-day-long visit."

"For some reason, he thought nothing would happen to him."

Boris, Natalia's son, is HIV-positive. He found out about his diagnosis sixteen years ago — in the early 2000s. He was eighteen and he was going to join the army after graduating from high school. The virus was found during a pre-army medical examination. Boris came back home and was staring out of the window for a long time: "Mum, can you imagine that now I will have neither family, nor children, nor any life at all".

He knew how he got infected: there was an HIV-positive guy in his friend-group, they shared needles. But for some reason, he thought nothing would happen to him. On top of that, he really needed a dose — simply couldn't wait.

Boris started doing drugs at the age of fifteen. He and his mother moved to a new city and, at first, they lived in a rented flat. Boris was bored: no friends, no acquaintances — all of them stayed back in Surgut and now were thousands of kilometres away. While his mother was at work, he became friends with a neighbour who was addicted to heroin. That's how it started.

A few years later, Boris robbed someone to get money for drugs. He was sent to the colony in Belgorod, where he was prescribed an antiretroviral therapy. "I wanted to be treated, but I was constantly feeling bad from the medicine, — Boris says. — I felt sick and dizzy. So I started and then gave up on my treatment several times".

In prison Boris has had tuberculosis and his well-being was deteriorating. But at least he stopped doing drugs: if any other prisoners got them, they costed a fortune and Boris couldn't afford them. He came out of the colony with a firm intention — never to do drugs again. But when he came back home it all started anew. "For people who are addicted to drugs it takes one to know one, — his mum says. — Let's say we are walking down the street, and a seemingly normal guy passes us by. And Boris says to me: "Look, mum, this one is a drug addict as well". They seem to attract each other".

Now Boris is thirty four, fourteen years he spent incarcerated. First time after serving his sentence and returning home he met his old friends and quickly fell back into the same patterns: drugs — robbery — prison. It happened like that the second time too. "After serving his time for the third time, when Boris came home he looked insane, — Natalia says. — He kept seeing some strange things, he was antsy. I've talked with our local AIDS Centre's representatives. They've said it's the virus affecting his nervous system like that". This time Boris held his ground and didn't continue to do drugs. But in order to compensate his addiction to drugs in some way, he started drinking. It didn't take much for him — after just a few shots he would become violent. And he ended up in the colony again.

"When I arrived to serve my new sentence, they did the tests again, — tells Boris. — They turned out to be bad: the viral load was greater than five million copies. I didn't talk to anyone, just wanted to sleep all the time". The therapy was prescribed once again. It consisted of three drugs: Intelence, Zidovudine and Lamivudine. By this time Boris had already ceased to hope that any drugs would help him. He was sure he would die. But suddenly the therapy began gaining results. Three weeks after starting his treatment he woke up, and for the first time in many years, he felt a surge of energy. Then he started getting his memory capacity back: he noticed he could remember new names and phone numbers again.

Once he phoned his mother and said: "I want to live". In four months the viral load has decreased to 879 copies. From then on it only got better: Boris started believing that the viral load in his body would fall down to an undetectable level, and then he would be able to start a family and "lead a normal life". He even met a girl from his native town via the phone, and started thinking about how to tell her about his diagnosis so as not to scare her. "I haven't seen anything in life except for prison, — says Boris. — I want it all to be over. To have a family, comfort of my own home, peace of mind. I started to dream about it all the time". A few weeks ago Boris went to the medical unit to get his therapy drugs, but they've run out of Intelence. Instead, a different drug will be issued to him now — Kaletra (Lopinavir).

If a person is on a combined ART (antiretroviral therapy), then it should be done regularly, without breaks. A change from one medication to another should be done only after consulting with a physician, and under his/her control. If there are any breaks or changes in the course of treatment or if a patient starts taking only two instead of three prescribed medicines, he may develop resistance to one or even to a whole group of drugs, and then the whole therapy combination will need to be changed.

Boris decided he wasn't going to take Kaletra, as he still had some Intelence left. "Three days ago I took the last pill that I had, — he says. — But the new batch still hasn't arrived". In addition to Boris there are eleven more HIV-positive people in the colony, all waiting for their medicine. Some of them started taking Kaletra, but they felt sick. According to Boris, one of his friends' "legs went black" after he changed his treatments. He himself decided to wait till the colony would get Intelence again. But no one knew when that would happen. "For now I feel fine, but I started to get sleepy again, — says Boris. — Energy just disappears. I am afraid it'll become even worse. I've just started believing I had a future. I don't want to lose it".

HIV-positive and detention places

About 600,000 people are incarcerated in Russia nowadays. Approximately 63,000 out of them are HIV-positive — that's more than 10%. About 25% of all deaths in prisons are due to HIV. It is impossible to say for sure how many of the incarcerated are getting ART treatment. In general, the situation with drugs in prisons is not worse or even better than the average in Russia. For example, in 2017 only the third of HIV-positive Russian citizens received ART at the expense of the state. "As far as I know, a little bit more than 28,000 yearly courses of treatment were purchased for prisoners", — says Alexey Mikhailov from the International Treatment Preparedness Coalition (ITPC). That is, in prisons only less than half of the inmates are supplied with the treatment, and this is at best.

There is simply not enough money in the budget to provide therapy to every resident of Russia. The 2018 Russian Ministry of Health budget for treatment of HIV-positive citizens is 21,600,000,000 rubles. The number of Russian citizens with HIV-positive status is nearing one million. "There are different ART regiments. First-line regiments will suit those patients who are just starting their treatment. Usually, they are the least expensive ones — from 10,000 to 12,000 rubles per patient per year. But second- and third-line regiments are noticeably more expensive — up to 300,000 rubles per year. Generic drugs do appear on the market, but their prices are comparable to the brand ones. In order to have enough medicine for everyone, you need to either increase the budget or lower the prices," — says Mikhailov.

Reports that prisoners do not receive medicine or receive them intermittently arrive constantly. The summer of 2018, the Russian Society of People Living with HIV sent an alternative report to the UN Committee Against Torture, which states that HIV-positive Russian citizens often cannot access treatment and testing for immune status and viral load. The report gives more than ten examples of HIV-positive prisoners being denied therapy throughout the years. For example, in 2012 the NPO "Zona Prava" recorded "a case of significant pain and human suffering" in detention center No.6 of Government Federal Penitentiary Service of Russia (UFSIN) in Moscow region: the prisoner didn't get ART-therapy for seven months. In 2015, a prisoner of IK-5 UFSIN in the Tambov region who suffered from HIV and Hepatitis C didn't receive his treatments from April till December.

"It often happens that in a correctional institution there are only two drugs out of three that are necessary for a combination,” — says Sergey Petryakov, head of the human rights organization "Zona Prava." — The prisoners are told to take two drugs for a while, and then maybe a third one will come. But with this "treatment" the body becomes immune to medicine and you have to change the whole regiment — for a stronger one. As Petryakov explains, shortages of drugs most often occur because of the "carelessness of officials".

According to the Government Decree of 2012, the Ministry of Health is responsible for purchasing for FSIN in Russia. "The FSIN forms a request based on those received from its regional offices. Then this request goes to the Ministry of Health. It conducts the auction and transfers the purchased medication to the FSIN, then the FSIN distributes them amongst its subjects, and those send them to specific institutions," — explains Sergey Petryakov. According to him, this scheme often fails. First of all, for the medication to reach prisoners in time, the Ministry of Health needs to receive the request for purchasing from the FSIN promptly. This often doesn't happen. The Ministry of Health frequently experiences issues with auction conducting as well. For example, in 2015, 28 out of 56 auctions, conducted for FSIN, didn't happen.

Public Organisation "Zona Prava" received dozens of phone calls from various regions: prisoners and their relatives complained that there was no ART in their places of detention. In 2016, “Zona Prava” appealed to the Prosecutor General’s Office of the Russian Federation with a request to conduct an inspection. Facts were confirmed: it turned out that in 2015, FSIN sent its request for medication and diagnostic tools to the Ministry of Health in time. The total sum of the purchasing request was 2,300,000,000 rubles. The total cost of the medication supplied was only 1,989,000,000 rubles, which led to a medication deficit in FSIN institutions. The fact is that the lots were initially put forward at too high prices — perhaps this was due to currency fluctuations. To remedy the situation, the FSIN organized a redistribution of medication between regions, reviewed some of the therapy regiments and launched a weekly monitoring of the medical supply. According to the Prosecutor General of the Russian Federation Yuri Chaika, these measures “allowed to reduce the tension connected with the deficit of medical supplies for a while. But they haven't helped the issue at larg."

Medication shortage — isn't the only issue of prison medicine.

Today the issue with medication supply to FSIN isn't so acute. But still, on occasion, reports of disruptions to the supply are received. "The Ministry of Health carries out budget purchases, and there are more and more of them every year, — says Olga Romanova, head of the human rights organization "Russ Sidyaschaya". — But prisoners are still asking for medication. Not only for ART-therapy. Usually, they ask for the most basic drugs: Citramon, Festal, Antigrippin."

Although, medication shortage isn't the only issue of prison medicine. "According to the rules, if you fall ill and get a prescription for medication, you can not just take it and keep it in your bedside-table, — says Romanova. — You have to go to the medical unit and queue every time you need it. If you feel bad, if you have a fever, if you have a seizure in the middle of the night — you have to wait and endure it".

"To understand how prison medicine works you need to experience it for yourself", — says Ruslan Vakhapov, head of the Yaroslal branch of "Russ Sidyaschaya" Foundation. "I've served my sentence in IK-1 in Yaroslavl. We called the doctor from our medical unit Mr. Pyodiny, — recalls the human rights activist. — He was an old man, who smelled of alcohol fumes from the very morning. We gave him that nickname because for every ailment he either prescribed Pyodine or garlic. We couldn't get garlic anywhere, though. So we were left with Pyodine.

Vakhapov recalls: if someone needed to visit the medical unit, first they had to sign up through their head of the detachment. You could do it yourself, but then you had to ask an administration employee to let you out of the cell. "But why would he do that? He might not let you out", — says Vakhapov. If you managed to sign up, then you had to wait for your appointment. There would be about 800 people in the colony at the same time. Doctor's appointment time was from 10 a.m. till noon. "Let's say twenty people had signed up. Then the doctor will have six minutes per patient," — the human rights activist explains.

When Vakhapov was transferred to SCD (strict conditions of detention), he became acquainted with HIV-positive prisoners. "It happened often, that the therapy ran out, and the patient wouldn't get it for the entire month, — says Vakhapov. — Once, a special forces unit came and severely beat them up, there was blood everywhere".

Andrey (the name has been changed) served his sentence in the same colony a couple of years ago. In 2011 he was convicted under the article 228 — illegal possession, purchase, and transportation of drugs without the purpose of sale. While the trial was going on, he found out he is HIV-positive. Andrey has heard that there are supply issues with therapy in colonies, so he decided to start it immediately. His relatives would buy him medication for immunity and liver support on the outside. "It was hard to gain permission so that they would be allowed in the colony", — says Andrey.

In line with the laws, HIV-positive prisoners are supposed to get additional food. But according to Andrey's memories "instead of butter, they gave a strange substance like margarine, which almost did not melt", and water mixed with a condensed milk instead of actual milk. "I constantly wrote complaints and got myself in punitive confinement, — says Andrey. — They would beat me up sometimes, but not till I bled, as they were afraid to get infected. They also tried to avoid hitting me in the liver — the colony stuff knew it was unhealthy, and that I could die because of it. Instead, they could beat my legs — from the groin to the heels".

Once Andrey was put in a hospital because of varicose veins. There he met prisoners from neighbouring colonies. Some of them had HIV infection in the last stage. "They were in a lot of pain, rotting of the bones began, — says Andrey. — They needed strong painkillers, but they weren't provided. Several times I even shared my own with them".

"In the Sverdlovsk region, there are almost no infectious disease specialists in colonies"

In 2016 the human rights organization “Zona Prava” prepared a non-governmental report “Prison medicine in Russia”, which describes the main issues with the provision of medical assistance in places of detention. The authors of the report write, that medical institutions and medical units of the penitentiary system experience the lack of funding. According to the information from the FSIN of Russia official website, in 2013 the state allocated 2,000,000,000 rubles for medication supply to the penitentiary system, although the demand was around 6,000,000,000 rubles. There is no publicly available information for the following years. But, as the authors of the report mention, taking into account the previous dynamics and the state of the economy, we can say with a high degree of confidence that the issue has not been resolved.

The other issue is the lack of personnel. Due to the low budget and the low status of work in the institutions of the penitentiary system, there are few skilled employees and narrow specialists. The most scarce specialties are infectious disease specialists, neurologists, oncologists, surgeons, dentists, and gynecologists.

"I don't know what's happening in other regions, but there are almost no infectious disease specialists in the colonies in Sverdlovsk region", — says Liudmila Vins from social assistance center "Luna" in Ekaterinburg. The organisation holds seminars for HIV-positive prisoners: tells them about the therapy, and how to take it correctly. Vins gives a recent example: "In one of the colonies — quite prosperous — a young man who had previously refused therapy, felt sick. On top of that, his test results were not very good. He went to the medical unit to receive the therapy, but this colony didn't have an infectious disease specialist on staff. They had to send a request to the higher authority. The answer arrived and the prisoner started receiving treatment. But it happened four months after he requested it.

This is one more reason why prisoners often don't receive therapy. As Vins explains, being put in a colony, some people write a formal refusal to be treated. Usually, these are people who are influenced by stereotypes about the "harmfulness" of therapy, or those who do not understand what it is. It is often the case for drug addicts, who haven't yet realised the necessity of treatment. "They start having health problems in the colonies, they want to start treatment, but they already have a form with an official refusal in their medical records," — says Vins. In her opinion, we need not only to supply prisoners with therapy, but to also explain its necessity to them. Many refuse treatment themselves or stop taking their medications when faced with side effects.

"It was almost easier to buy drugs than potatoes"

"Sometimes I put my cup into the slot and then forget about it. I start looking for it everywhere, panicking, — says Aleksei. — My memory becomes worse each day. Also — sleepiness, weakness, nervous breakdowns. Twice I was in the medical unit with 39C fever. They would lower it to 37C, and then send me to the outpatient treatment".

Aleksei found out he's HIV-positive in 2008, when he was serving his sentence in the colony for the first time. "In 1999 it was almost easier to buy drugs than potatoes in Moscow, — says Aleksei. — I was fourteen then and started doing drugs out of my own stupidity. At times I stopped doing them and went back to work. At one time, I was a personal driver for a famous surgeon, then opened my own small business in selling used spare parts. But every time I would fall off the wagon". It was because of drugs that he ended up in the colony. Aleksei is sure that he contracted HIV in the isolation ward: there were three other people with him, and they all shared one needle. "Back then, in the 2000's, even in the colony it was easy to score drugs, — he says. — The guys, who were with me there, said they were healthy. It turned out, someone lied".

In 2015 Aleksei started his therapy, already in a different colony. At that moment his viral load was 300,000 copies. "I was prescribed three drugs, and they were given to me for one month, after that the pharmacist went on holiday, — says Aleksei. — I took a break, then started taking them again but refused one of them, because it made me feel sick. I didn't know then that it would only make me feel worse, and that I couldn't take a break in treatment or reduce the amount of medication. Then Aleksei was transferred to a different colony — the same that Boris was in. Aleksei also started taking a therapy regiment of three drugs, which included Intelence. He didn't know if it was helping him: the infectious disease doctor turned up at the colony once every few months. Nobody took tests from HIV-positive prisoners. "I turned to doctors, but they would offer me only cold medicine, — says Aleksei. — They didn't understand anything about it. An infectious disease specialist was needed, but he was never there".

Now, when Intelence has run out, Aleksei regularly writes complaints to the city and district prosecutor's offices. In July he sued the medical unit, which is responsible for medication supply in his colony. The hearing of the case was supposed to be in early September, but the court's website states that it was postponed. The reason — "evidence discovery."

According to Sergei Petryakov, in such cases, the most effective way to get treatment is to file an administrative lawsuit against the administration of the colony. It also happens sometimes that prisoners turn to human rights defenders and journalists, make a fuss, and "in a magical way, scarce medication materializes". But in this case, there's always a risk that medication will appear only for those prisoners, who spoke up about their problem. "For those, with whom we worked, medication appeared, — says Petryakov. — But not for others".

Although, neither Boris, nor Aleksei, wanted to make a fuss. They asked us not to disclose their names, and colony number, where they are incarcerated. In their words, "administration is threatening us with punitive confinement and punishments". Recently, one of the human rights organizations donated medication to their colony. But it was only enough for two months, and only for one person.

"I have only four months left of my time in here, — says Aleksei. — I spoke to my mum on the phone not long ago. We've decided to move to a different area, as soon as I'm out. Where there are no familiar faces, and nothing can remind me about drugs. I wish I'd live till that moment. I'm really afraid for my life".