“Doctors are ashamed to look patients in the eyes.” How Russian Ministry of Health left Donbas without HIV treatment

2014–2022: Medications transported by Ukrainian volunteers

A portion of the Donetsk and Luhansk regions became disconnected from Ukraine as early as 2014. However, there was no scarcity of medications for people living with HIV in those areas until relatively recently. Notably, the occupied cities were supplied not from the Russian side, but rather from the Ukrainian side. The concern about medication shortages was only present at the outset, during the years 2014–2015.

“At that time, the Russian Federation pledged to independently provide medications, rendering any assistance from international organizations unnecessary in terms of tuberculosis and HIV/AIDS,” Valeria Rachinskaya recounted the situation in 2017, when she was the head of the regional department at the All-Ukrainian Network of PLHIV [people living with HIV]. “This assertion proved to be false. Not a single pill was sent there through the HIV/AIDS program in the years 2014–2015.”

During the years 2014–2022, Global Fund for AIDS, Tuberculosis, and Malaria supplied medications to Ukraine. However, attempts to deliver medications to the Donetsk and Luhansk regions were met with resistance from the occupying authorities. The supplies were halted, including those for children. This led to the establishment of a system of illicit transportation of medications.

In Donetsk, this task was taken up by the charitable foundation Club Svitanok, whose members independently transported medications across the border. They assisted patients in the region in bridging the gap until regular supplies could be reinstated. The scheme operated as follows: female volunteers would drive from Donetsk, cross the “gray zone,” retrieve the medications, and return. At both borders, these women would present documents stating that they were HIV-positive and that the tablets they were carrying were for personal use. In fact, border guards weren't surprised by this, given the continuous flow of people from occupied territories into Ukraine for groceries, medications, or pensions. However, bribes were often required for transporting therapy, and the women were frequently detained. Each trip came with its own risks.

“Natasha Z. was one of the first,” recounts Alla, a Ukrainian HIV activist. “In 2014, she started bringing therapy from across the border. Once she called and said, 'I've been detained at the checkpoint.' We told her to empty her pockets and hand over all her money. Otherwise, they wouldn't let her go.”

Valeria Rachinskaya, who was involved in these “smuggling” operations, was also transporting the therapy to Luhansk with her colleagues. On one occasion, they were interrogated and searched for five hours. Border guards scrutinized every piece of paper and even checked tubes of toothpaste. After the only accessible checkpoint for cars in Luhansk was destroyed by bombs at the end of 2014, Rachinskaya and her colleagues had to carry their cargo in suitcases, backpacks, and bags. However, they managed to deliver therapy even to incarcerated individuals.

Until an agreement could be reached between Kyiv and the occupying authorities regarding regular medication supplies, volunteers were the only source of provision. A resolution was reached by the end of 2015, and in early 2016, UNICEF vehicles carried tablets purchased with funding from the Global Fund to the occupied territories. Subsequently, the Global Fund extended its grant multiple times to procure therapy for the Donetsk and Luhansk regions, ensuring uninterrupted medication supply to people until 2022.

“There were no interruptions in antiretroviral therapy in the uncontrolled territories due to the coordinated efforts of donors and the responsible approach of the PLHIV Network,” Ukrainian media quoted Valeria Rachinskaya at that time. “The medications were procured by the Global Fund and delivered by UNICEF; besides, Ukraine's political determination played a crucial role; without it, the provision wouldn't have been possible.”

Medications were being transported until the annexation of both regions by Russia. As of September 2022, the healthcare system in those areas came under the control of the Russian Ministry of Health.

Fatalities among drug users

The Russian Ministry of Health had prior experience in managing annexed territories: Russia began offering therapy for HIV patients in Crimea immediately following the annexation. However, those who were on substitution therapy (ST) were not as fortunate.

ST distribution centers were closed in March 2014. Despite official statements from the Ministry of Health claiming no fatalities, witness accounts collected by The Insider challenge this claim.

Many of those struggling with substance use passed away within just a month or two after the program's discontinuation. Some experienced deteriorating health conditions, others resorted to suicide, and some perished while seeking drugs. A person from Simferopol who dealt with substance use shared with The Insider that among their acquaintances who discontinued substitution therapy, 24 individuals passed away: “Galka Miroshko, she was quite old... Misha the Vampire, Andrey Palych who hanged himself, young Vanya who died from an overdose, Igor Svyatoy, a boxer, Svetlana Kiyaniha, fair-haired Olga, Seryozha Galkin, Ira Koshka who jumped out of the window and broke her spine, Galka Nikulina...”

Initially, courageous individuals made efforts to transport substitution therapy medications to both Crimea and Donetsk. However, these endeavors ceased following the initial arrest in 2014.

2023: expired drugs or nothing

After the annexation, HIV patients in Crimea were switched to medications funded by the Russian budget. Theoretically, individuals with HIV in Donetsk and Luhansk should have been receiving the same medications for a year now. However, patients under the care of the Ministry of Health, across all regions in Russia, are currently facing identical situations. Activists describe the situation as catastrophic.

A monitoring website called Peroboi.ru has been operating in Russia for years, where people with HIV can report shortages or absence of medications. This platform facilitates the swift identification of medication deficiencies in various regions. In 2022, 314 such complaints were documented, and within the first half of 2023, the count has already risen to 343. The majority of reports came from St. Petersburg, Leningrad, Sverdlovsk, Tyumen, and Donetsk regions. People report cases where expensive modern medications have been replaced with those previously discontinued due to side effects, or where incomplete treatment plans are provided (replacing two drugs with one), or where patients receive just a single blister of medication, as in the Donetsk region.

Messages posted on Peroboi.ru from Donetsk and Kherson regions in 2023:

Alexander, Donetsk: “The doctor, seeming to understand my situation, provided me with remnants of therapy for the next six months, but the tablets expire in May 2023. I'll have to take expired medication because we have no other choice. The AIDS Center doesn't know when deliveries from Russia will come or what the therapy will be. There's also a shortage of tests. Who should we complain to?”

Anna, Donetsk: “They gave me expired medication. They said they don't know when Russian medications will arrive. Can I take such medications? I'm worried.”

Elena, Donetsk: “I live in Donetsk. I hesitated to speak out until now, fearing backlash against the doctor. But at this point, the situation is dire; we have no medications and no reagents left. None at all. The doctor said they can't even provide therapy for those with weak immune systems and high viral loads. The doctor admits they're ashamed to look patients in the eyes because there's nothing they can offer, only promises of deliveries and empty reassurances. She says they were told to collect patient data since only those with Russian passports, registration, and SNILS numbers - the entire set of Russian documents - will receive therapy. The doctor told me, 'Come over, we'll give you more expired medications, keep taking them.' A friend in Makeevka was told, 'Here's a month's worth of therapy, and if there are no new supplies by the end of the month, we'll give you phone numbers, and you'll have to buy.' In short, we need assistance at a higher level. We need a way out, someone to write to. Spread the word as much as you can – we're in deep trouble. We need to reach out somewhere, somehow, to get things moving because it seems we've been abandoned to our fate here.”

Zoya, Kherson region: “I have medications left for 10 days. The doctor said they haven't been delivered, and it's unknown when they will be.”

Anna, Donetsk: “What should I do in my situation? Today, I was at City Hospital No. 9. They only provided medication for 10 days and said the future is uncertain regarding deliveries of these drugs to Donetsk. These medications aren't available for purchase in Donetsk; you can only go to Russia, but they didn't give me a prescription. It's a closed loop: they don't provide it for free, and you can't buy it either.”

Alexander, Donetsk: “On June 9, 2023, we were given two weeks' worth of the ARVT drug Eftenla. Since then, our supply has run out, and our infectious disease specialists say they don't have the medication, and we should look for it ourselves. I don't know what to do. Please offer some advice, as I have no reserves, and I don't know where to buy it...”

There have been instances of medication supply interruptions to AIDS Centers in Russia in the past, often attributed to ineffective planning. Initially, the responsibility for ordering and procuring medications rested with the Ministry of Health of the Russian Federation. However, over time, issues arose, prompting complaints, and resulting in the transfer of procurement responsibilities to regional ministries. After a period, another breakdown occurred, causing a depletion of medications, and the procurement process was once again handed back to the Ministry of Health.

However, the present challenge doesn't revolve around procurement. Currently, the issue lies in the insufficient availability of funds for medications.

The federal budget allocated for purchasing medications to treat HIV, tuberculosis, hepatitis B, and hepatitis C from 2023 to 2025 amounts to 31.7 billion rubles ($330 million) annually. The same amount was earmarked for 2022. However, these funds proved inadequate. In the latter half of 2022, the Ministry of Health conducted supplementary purchases, utilizing funds from the 2023 budget. These purchases amounted to 8.6 billion rubles ($89 million), resulting in the acquisition of 566,000 courses of treatment. This coverage extended to 71% of patients registered in the system.

As a result, this year's funds only stretched to cover 292,000 courses, which accounts for 30% of the people requiring treatment. The Ministry of Health has yet to utilize funds from the 2024 budget.

Fortunately, during the years of supply disruptions, a network of activists has emerged in Russia. These activists write appeals and inquiries to the Ministry of Health and engage with pharmaceutical companies. Throughout the country, “mutual pharmacies” have been in operation for years, where patients contribute unused medications, left over as a result of therapy changes. On occasion, these pharmacies receive humanitarian aid from pharmaceutical companies. In times of disruptions, these pharmacies become more active, and shipments are dispatched to regions in need, supporting people until the situation stabilizes. Through postal deliveries or the efforts of volunteers, medications have been sent to Donetsk.

“Treating physician suggested posting a complaint to Peroboi.ru”

Vera resides in Donetsk. She learned about her HIV diagnosis fifteen years ago when her husband passed away, and for all those fifteen years, she diligently took her medication. Without these medications, the virus would begin to replicate, which could lead to her death. As Vera speaks with The Insider correspondent, she holds three boxes of medication received from Russia by mail, and that's all she has for the near future. Her AIDS Center has no medications, and the pharmacies are also empty.

“Until recently, everything was fine,” Vera recounts. “Up until June, I was taking one tablet a day, following a very advanced treatment plan. But now, there is no therapy available in Donetsk. I went to see the doctor in June, and she mentioned that there would be shortages of medications. Some people were offered expired medications, but I was given a 15-day supply of tablets with the hope that things might improve. Yet, after 15 days, I was given another week's supply and told to contact Peroboi.ru. Yes, it was the treating physician herself who suggested it! She recommended it to everyone. The folks at Peroboi.ru provided me with medications for two months. The treatment plan is a bit simpler; now I take not just one tablet but four, but at least I have something.

In order to minimize postage costs for those who correspond with Peroboi.ru, they send a collective package to the AIDS Center's address. However, they send mine separately because my area is under heavy shelling, and I don't move around the city much—just between work and home. The doctor mentioned that my tablets cost around 6,000 to 8,000 rubles per month, and there were rumors that they were being delivered to pharmacies. I spent two days visiting various pharmacies: some didn't have them, others had limited stock that got sold out within half a day with no restocking expected.

I have a Russian passport, and I applied for my SNILS a month ago, but it's not ready yet. Nevertheless, we submitted all our documents to the AIDS Center a while ago. You can't imagine how terrifying it is to be without these tablets. I've been supporting myself for fifteen years, feeling well. They told us right from the start: you must not interrupt the treatment, you must take the tablets every day. And now, I don't even want to think about it. I hope that maybe after the New Year, things will improve slightly, and they will include us in the new budget...”

Ministry of Health: No funds left

Why did the shortage of HIV medications only hit the Donetsk region now and not a year ago? Following the onset of the conflict, there was still a decent supply of Ukrainian combination drugs available. Additionally, there was a decline in the number of patients due to people relocating to Ukraine or Russia. However, the available reserves have now been depleted.

“Suffering from a lack of medications, patients in Donetsk began submitting inquiries to various government bodies,” Sergey, an activist in the HIV field, reveals. “Initially, the requests were diplomatic: 'What budget provisions will cover the procurement of ARV therapy for the new regions?' This evolved into pleas: 'We urge for additional funding.' Subsequently, it turned into appeals for assistance: 'We have no medications; please allocate resources from the emergency fund.' Unfortunately, the Ministry of Health of the Russian Federation has, in its customary manner, responded in a manner that suggests a lack of understanding. One patient from Donetsk received a response with the following statement: '...in light of the shortage of medicinal products delivered to the new regions of the Russian Federation at the expense of the national budget, the provision of essential medicinal products for citizens of the Russian Federation falling under the category of 'AIDS, HIV-infected' is managed using the budgets of the individual regions of the Russian Federation.' This implies that if you're lacking medications, you should inquire with DNR's Ministry of Health...”

“However, the crux of the matter lies not in the 'new regions,' nor is the financial dearth exclusive to them,” Anna, an activist who collaborates with the Peroboi.ru website, concurs. “The underlying issue is that Russia lacks sufficient funds to cater to its own patients, even excluding the 'new regions.' The budget earmarked for acquiring ARV therapy stagnated several years ago and hasn't seen any modification. Despite officials from the Ministry of Health repeatedly visiting the 'new regions,' their presence doesn't bring about any change to the situation. This is because the challenges are universal, spanning all regions. Curiously, in the past, chief medical officers of AIDS Centers would typically remain reticent regardless of the circumstances. Paradoxically, it's possible to secure a substantial increase in funding by citing the 'new regions' as the rationale. They can assert that the sudden increase in the number of HIV cases necessitates enhanced efforts to save our citizens, thereby justifying the demand for additional medication procurement. However, they haven't even tried to pursue this avenue...”

According to a representative from the Ministry of Finance who spoke to 'Vedomosti' newspaper, there have been no appeals for budgetary adjustments for the acquisition of antiretroviral drugs for the years 2024-2026.”