‘Take the pills you’re given’ How Russia’s prison system prevents inmates with HIV from getting the treatment they need to survive
Story by Alexandra Amelina. Translation by Emily ShawRuss.
In February 2023, Irina, an inmate at the IK-28 women’s penal colony in Russia’s Samara region, began speaking out publicly about her inability to get the HIV treatment she needs in prison. Hers is not an isolated case — HIV-positive inmates throughout the country have been going without lifesaving medication for years. Meduza spoke with human rights activists about how this situation came to be, and with prisoners who are being denied access to the treatment they need to survive.
At least seven regions
On February 22, the independent outlet Holod published the story of Irina, an inmate with HIV who’s being held in the IK-28 penal colony in Russia’s Samara region. Communicating through her son, she told journalists that the HIV-positive prisoners there hadn’t received the antiretroviral therapy drugs Kaletra (lopinavir/ritonavir), Simanod (atazanavir), Ritonavir, or Kemeruvir (darunavir) for several weeks. According to Irina, 10% of the prison’s detainees are now confirmed to be HIV-positive.
Irina said that when she and other women with HIV wrote to the prison superintendent, their complaint wasn’t registered. Yevgeny, Irina’s son, said that a report was filed against her, and that the administration wanted to send her to a “ShIZO,” or “punishment cell,” but in the end, they only gave her a verbal reprimand. On March 6, Yevgeny told Meduza that his mother had been hospitalized with severe liver pain. According to him, she still hasn’t received the HIV treatment she needs.
Since the beginning of 2023, there have been at least seven reports of Russian prisons lacking antiretroviral medications that patients need, according to data collected by the patient advocacy group Patient Control for its project Pereboi.ru. Activists have reported complaints from patients in the Leningrad, Volgograd, Nizhny Novgorod, Novosibirsk, Rostov, Samara, and Sverdlovsk regions.
According to Georgy Ivanov, a lawyer for the Committee Against Torture, it’s almost impossible to describe in detail the scale of what’s happening: “Neither I nor organizations that specialize in helping prisoners have complete statistics on these kinds of appeals. The last time a lack of medication was discussed [in the media], as far as I remember, was in 2019. Back then, the problem arose because there weren’t contracts for supplying the drugs.”
In a comment to the Russian newspaper Izvestia, Patient Control representatives expressed fears that there could be more prisons where HIV-positive inmates lack stable access to medications than there are registered complaints. According to activist Yulia Vereshchagina, prisoners likely keep silent because they are afraid of prison administrators.
No appointments, wrong medications
Before becoming a human rights activist, Committee Against Torture lawyer Pyotr Khromov served time in Moscow’s Krasnaya Presnya pre-trial detention center. As part of his assigned work as a hospital attendant, he compiled lists of people with HIV. Pyotr described prisoners’ initial medical examinations to Meduza: “When they admit people to the pre-trial detention center, they administer blood tests for syphilis and HIV. About half of HIV-positive detainees learn about their status for first time through this test. Obviously, they weren’t under observation at the AIDS center before this and weren’t given any HIV therapy.” After that, according to Khromov, the center takes another blood sample to check these detainees’ immune status and determine how well their immune systems are coping with the virus.
Pyotr Khromov said that Moscow detention centers only nominally have in-house infectious disease doctors — in reality, the inmates diagnosed with HIV can only receive an appointment for drug therapy at the Matrosskaya Tishina detention center hospital.
If a person is diagnosed with HIV and can’t provide a document showing that they previously received antiretroviral (ARV) therapy, he won’t receive it for several months — not until he goes to the only hospital in all of Moscow’s detention facilities, in Matrosskaya Tishina, where he’ll be seen by an infectious disease doctor. [This happens] even if his immune status is low: I’ve personally seen an index of 20 cells/mm3 in a person waiting to see a doctor.
Due to these limitations, even when drugs are available, interruptions in ARV therapy can occur when an HIV-positive person is held at the detention center if there’s no infectious disease doctor on site to prescribe treatment.
Patients who are already registered with regional AIDS centers receive medications immediately upon arrival to detention centers or penal colonies, but the drug treatment they get in prison isn’t always the same as what their doctors prescribed. Sergey, who was serving his sentence in the IK-9 penal colony in the Kaliningrad region, experienced this issue firsthand. He found out about his diagnosis 20 years ago and had been taking the same set of drugs to treat his HIV infection since 2015. But when he was in prison, he told Meduza, he wasn’t allowed to continue his usual regimen:
I came to the medical unit to get the medication, and they told me that my medication wasn’t available. That I could take a different one, if I wanted. They hadn’t done any tests. No one checked if a different regimen would work for me or not. From January to March 2022, they gave me six different regimens. They didn’t really explain why there weren’t any [of my usual] drugs. They said that the Federal Penitentiary Service had no supplies, and that was it.
When Sergey was released and came to the regional AIDS center for a checkup, the medical staff there explained to him that the drugs he’d been given in prison shouldn’t be taken together. The prison’s administration didn’t provide information to the AIDS center about what exactly Sergey had taken for the full duration of his imprisonment.
Theoretically, if a prison doesn’t have the necessary medication for a patient’s treatment regimen, the patient’s relatives can provide it to the colony. Irina’s son told Meduza that he has to search for drugs for his mother on his own: “It’s very difficult to find ARV drugs in pharmacies in the Samara region, but I managed. They’re very expensive — it costs at least 10 thousand rubles ($132.70 dollars) a month. Not everyone has that kind of money. Or relatives who can buy and pass on the medication.”
In order to receive drug treatment, an inmate must report their HIV status to prison administrators. This requires obtaining a statement from the medical unit. Human rights activist Maria told Meduza that prison medical staff rarely sign such permits: “[Let’s say] a person is being treated with a three-drug regimen, and one of them is not available in the penal colony. If the Federal Penitentiary Service signs off on prescribing this drug to the inmate, the colony would get itself in trouble. After all, it’s the colony’s fault that the prisoner is forced to buy a drug that he’s legally entitled to receive for free.”
Drug procurement chaos
One of the reasons prisons aren’t always able to receive the medication they need has to do with Russia’s state procurement process, according to the Committee Against Torture’s Pyotr Khromov: “No matter what kind of antiretroviral therapy a person uses on the outside, in penal colonies or detention centers he’ll receive only one type of medical therapy — the one purchased by the Federal Penitentiary Service’s regional medical department. Mainly Kaletra, as it’s the most widespread and the cheapest. But unlike people on the outside, who can be given a different drug if they experience side effects, prisoners aren’t given a choice.”
Russia’s system for procuring medications for inmates with HIV has been inconsistent in recent years. On March 1, 2019, the Health Ministry transferred all purchasing authority for medications for HIV and for hepatitis B and C to the Federal Penitentiary Service. The Health Ministry only retained the right to purchase antiviral drugs and diagnostic tools for federal government agencies subordinated to the ministry, the Federal Medical-Biological Agency, and Russia’s consumer welfare agency Rospotrebnadzor, as well as for medical institutions in Russia’s federal subjects.
At the same time, the Finance Ministry was instructed to reallocate the budget set aside for ARV drug procurement for the Federal Penitentiary Service. A 2019 report from Russia’s consumer welfare agency indicated that during the course of the year, about 90% of HIV-infected patients in prisons were receiving antiretroviral therapy. However, according to the NGO Treatment Preparedness Coalition, only half as many inmates actually received treatment. Starting in 2021, responsibility for purchasing ARV drugs for prisoners was transferred back to the Health Ministry.
This change of agencies responsible for procurement caused problems with purchasing ARV drugs and delivering them to prisoners with HIV, human rights activist Andrey told Meduza. A coordinator for the human rights group Russia Behind Bars (whose name we’ve omitted for security reasons) concurred: even if state procurements are made in full and prisoners have access to the drugs, not everyone can receive ARV therapy, as there are no unified regulations for issuing these drugs.
Some people with HIV who are serving sentences in Russian prisons aren’t Russian citizens. They receive medical therapy in the penal colonies because such treatment falls under the Federal Penitentiary Service’s authority. Upon release, these people end up in temporary detention centers for foreign nationals — the Internal Affairs Ministry’s jurisdiction. There, they don’t receive any treatment, as this doesn’t fall under the agency’s authority.
Incorrect and life-threatening ‘treatment’
In 2013, Yulia was sent to the IK-4 penal colony in Kaliningrad Oblast. She knew that she was HIV-positive before her imprisonment and had been taking the medications Kivexa (abacavir/lamivudine) and Isentress (raltegravir). Yulia told Meduza that from the start of her incarceration in a pre-trial detention center, she was unable to get the medications she needs:
On my first day [in prison], the so-called “feeding window” (Editor’s note: the window where medications are dispensed) opened, and they threw some pills at me. I said it didn’t look like my medication. They just told me: “Take what you’re given.”
According to Yulia, infectious disease doctors often put down a “less severe” stage of HIV in their notes when examining new inmates. This, she said, is a way for prisons to “maintain a stable number of relatively healthy people and not give inmates grounds to register their disabilities.”
In 2016, Yulia noticed that she was being given expired medications. Then, instead of daily therapy, she started receiving packages of pills for several days. The medical unit told Yulia that this was “normal,” and that the medications they were giving her can be taken up to six months after the expiration date. After that incident, according to Yulia, she started receiving pills either without packaging or without date labels. “I asked the medical unit why they cut off the expiration date if they were sure that the medication was okay. I was told that it was none of my business,” she said.
Yulia said that during her imprisonment, her medication was regularly changed without any tests; prison employees would simply show her a new entry in her medical records and explain that “now the medication will be different.” Once, when Yulia was prescribed the medication Kaletra, she had to write a refusal, as she’d previously been hospitalized with liver complications after taking it. During her imprisonment, Yulia took eight different drug combinations — a harmful practice that can cause an infection to progress.
In 2019, Yulia got pregnant. While undergoing exams and standard blood tests at the colony, she learned that her viral load was extremely high:
I went to the head of the medical unit and said that if they didn’t give a shit about me, at least take care of my child’s health: “Take me to an outside hospital.” The doctor nodded his head and disappeared — he just left and went on vacation for a few weeks.
Yulia was finally able to register at a maternity clinic during her 21st week of pregnancy. “When they brought me to the regular hospital, the gynecologist was shocked, of course, at the number and types of drugs I was taking as a pregnant woman. I had a prison guard with me — the doctor asked him what drugs were available now so that a permanent therapy regimen could be prescribed. He chuckled and said [the prison] had everything,” she recalled.
That evening, Yulia went to the prison’s medical unit to get the pills and saw the same medications she had been taking before. When asked why the promised medication was still unavailable to her, she was told that the administration “hadn’t ordered it yet.” She didn’t receive her new medications until a month after the appointment.
As soon as Yulia found out she was pregnant, she decided she would give birth without medications. According to her, the infectious disease doctor authorized her to do so, noting that her viral load had decreased. For unknown reasons, however, the doctor didn’t indicate the authorization in Yulia’s medical records, and she ultimately had a cesarean section against her will. The baby had high antibodies, she told Meduza, which suggested she was at risk for developing the disease herself. “My child was checked by doctors until she was three years old — she was only recently cleared. All this time, there was still a risk that my daughter would also be infected with HIV,” Yulia said.
Due to her frequent drug changes, Yulia developed drug resistance — there’s no longer any medication that tests show works on her body and reduces her viral load. As a result, her HIV infection has progressed to stage four, which is close to the terminal stage.
Human rights activist Maria said that because of the frequent changes in medical therapy, prisoners with HIV suffer from kidney failure, diarrhea, dizziness, weakness, anemia, and nausea. Yulia’s case, she told Meduza, is one of the worst possible outcomes of the government’s negligence.
Story by Alexandra Amelina
Translation by Emily ShawRuss