Ukraine has the fastest growing HIV epidemic in Eastern Europe, according to the data from Health Ministry’s Center for Public Health. The country’s five most problematic regions have traditionally been Dnipropetrovsk, Odesa, Mykolayiv, and Donetsk, as well as Kyiv city.
But things have changed after Russian-backed separatists occupied parts of Donbas in 2014. The Health Ministry lost access to the territories of the self-proclaimed “Luhansk and Donetsk People’s republics” and now there is no objective or precise information on the HIV/AIDS situation in these regions.
Hromadske spoke with residents living with HIV in the occupied territories, as well as people who know about the HIV situation in the so-called “republics.” Some of the individuals interviewed have asked to remain anonymous, so their names have been changed.
Three years of changes
Serhiy from Donetsk found out he was HIV-positive in 2003. By that time, the 45-year-old had been living with the disease for five years. Serhiy was a drug addict and was therefore at an increased risk of contracting the virus. He had blood tests for HIV every year. But after his last test, he was arrested for theft. He continued to use drugs in prison.
“I then got out, got a job and got tuberculosis,” he says. “It all started to progress. I went to the hospital and they told me: ‘Yes, you have been listed as HIV-positive in our database for five years already.’”
Serhiy only began taking antiviral medication another five years after that. Asked why he didn’t start sooner, he brushes it off: as in, there just wasn’t any need to. However, he changed his mind later, partly because this type of medication is free in Ukraine. Free tests to check his viral load and the state of his immune cells were also available. Serhiy says that, before the war, he went to the hospital every year. Also free of charge.
According to Serhiy, there was no longer any medication when the military conflict started in Donbas in 2014. HIV-positive people, himself included, were referred to the hospitals in Slovyansk. He did not go. He says that medication arrived in the self-proclaimed “Donetsk People’s Republic” in 2015, and now he receives regular treatment. He has to pay $5-7 dollars for tests. He also receives a $46 disability allowance.
Is that enough though? “It’s enough for something,” he laughs.
Serhiy cannot work due to his health condition. “I went out into the yard to tidy things up and that was it, I had already caught a cold,” he says. “You know, if there was a suitable job for me, I would work. But I can’t work as a loader.”
He has not had a single health check-up or a test since 2014. Says there is no point because even though you can lie down in a hospital bed for free, you still have to pay for your medication. Everything has become too expensive, he complains.
Before the war, Donetsk was the most HIV-affected region of Ukraine. By the start of 2014, there were four thousand new cases of HIV in Donetsk. This is 20% of all cases in Ukraine.
The so-called “State Sanitary and Epidemiological Service of the Donetsk People’s Republic’s (DPR) Ministry of Healthcare” stated that two thousand new cases of HIV were registered and 270 people died from AIDS in 2014. In the first half of 2015, there were over 500 new cases. During the same period in 2016, 992 new cases were registered.
Citing the so-called “DPR Ministry of Healthcare,” the Russian Life.ru tabloid wrote that the “government of the republic” linked the rise in HIV to the active military conflict: “Maybe, because of this, people are less likely to seek medical assistance and, as a result, less infected people have been registered.”
The figures registered in the so-called “republics” are less than those in the Donetsk territories under the control of the Ukrainian government. However, it is difficult to say how reliable the information from the “DPR” is, given the fact the Ukrainian Ministry of Healthcare does not have access there.
Valeria Rachynska, the head of the regional policy team at the All-Ukrainian Network of People Living with HIV/AIDS, said in an interview with Hromadske that, according to their estimates, there are around three thousand people living with HIV in the so-called “Luhansk People’s Republic”, and 16,000 in the “DPR.”
The “Republican Center for the Prevention and Fight Against AIDS” (before the war, this was the Regional Center for the Fight Against AIDS in Donetsk) says that there has been a twofold decrease in the HIV epidemic. However, given that around one-third of people from the Donetsk and Luhansk regions have left since 2014, it is uncertain whether this is really the case.
No medication, no skilled doctors
Svitlana from Donetsk found out she had HIV in 2008. The diagnosis was not a surprise. Svitlana told Hromadske that she had been injecting drugs for a long time, so she knew she was at risk. She started treatment immediately.
For the past few years, Svitlana has been working for an organization that helps people with HIV. She says that, since 2014, the organization’s existence has not been entirely legal as it is not registered in the “DPR.” The local “government” has not ratified the relevant law. The only officially registered organization is “Variant,” which also helps people with HIV.
“Today, in ordinary consultation rooms, they don’t prescribe treatment due to negligence. There have even been cases of bribery,” Svitlana says. “It’s understood that Ukrainian law is not welcome here, so to speak, but those who are friends with the people in charge understand and accept it if it is necessary.”
In 2016, the DPR’s Ministry of Health complained about a lack of medication. They said that only one-third of people with HIV receive medication. According to Valeria Rachynska, around two thousand people receive treatment in Luhansk region and seven thousand in the Donetsk region. This is only half of the people suffering from HIV. Drugs are procured at the expense of humanitarian organizations in the “republics.” For example, UNICEF sends around half a million dollars to the “DPR,” The International Committee of the Red Cross also sends medication regularly. The Ukrainian Ministry of Health, however, does not directly send medication to the occupied territories.
Besides medication, the “republics” also lack doctors. Svitlana says they all move to the Ukrainian-controlled territory.
“I think that we have gone back a decade,” she sums it up. “Yes, there are drugs, but all the tests have to be paid for. Some doctors in the private consultation rooms wear masks or gloves during the appointments. It shows they know nothing about how HIV is transmitted. They do not want to learn and develop. And then people don’t want to go to them.”
“They don’t trust the doctors because they stigmatize the disease. During the war, viral load testing has been carried out perhaps two or three times. As for pregnant women, this is the most important test as it determines the latency period. As a result, everyone is having cesareans. And the general attitude is: you either want to get better or you don’t. No one follows it up.”
If the situation in Donetsk is bad, the situation in smaller towns is slightly worse, Svitlana says. It’s harder to get humanitarian aid to these areas both because of the shelling, and the deteriorating infrastructure. They receive treatment there, but in addition to that, HIV-positive people require other drugs. Often, these people do not have access to them, either because there simply aren’t any, or the patients don’t have the means to buy them.
Mobile phone connections even affect patients’ access to medication. Many of them use the “republic’s” mobile phone operator Phoenix. However, for example, Svitlana still uses a Ukrainian service provider. Because of this, getting hold of residents in the suburbs who require treatment is often not possible.
Internally displaced with HIV
According to the Health Ministry, in the last three years, 1,712 HIV-positive people from the Donetsk and Luhansk regions, and occupied Crimea, have moved away. The majority — 1,260 people — came from the Donetsk region.
Denys is one of those people. He left Donetsk in 2016, but he became ill and decided to return to his home and family. There, a doctor sent him for tests, after which he found out he was HIV-positive. He told Hromadske that the diagnosis shocked him because he wasn’t in the at-risk group: he had never injected drugs and had never had unprotected sex.
Denys did not want treatment at first. It was only after a few months when he contracted pneumonia that he decided to listen to his doctors. Denys left the “DPR” a month later for Odesa. He hopes that this time for good.
For IDPs with HIV, the procedure for receiving treatment is not that different. They also need to register with a doctor and undergo tests. After leaving Donetsk, Denys received shorter antiretroviral regiment: two months, not three. “I asked for two because I knew that I would leave. But they wanted to give me only a month of antiretrovirals,” Denys recalls.
In Donetsk, they did not carry out the necessary tests for viral load, and the biochemical blood tests and analysis of CD4 cells were not free — CD4 tests cost $7 and biochemical tests cost $11-18. Denys, therefore, did not take them.
“Here in Odesa, they give us original drugs whereas in Donetsk they give us generics,” Denys says, explaining yet another difference between treatment in Ukrainian-controlled territories and in the “DPR.”
Generics are copies of the original drug. In Donetsk, Denys received drugs from India, whereas the original is made in The Netherlands.
Valeriya Rachynska adds that patients are given generics in the “republics” because they are cheaper. However, they usually do not differ from the originals.
“A branded drug is protected by a patent, therefore the laboratory or the company which created the drug has spent money on clinical testing, production, etc. The patent gives the pharmaceutical company time to ensure that it redeems all these costs. Generics are usually also branded, it just does not have a patent. Because of this, the cost is not high and the quality is the same.”
Denys says that his relatives do not know about his condition yet, and it is unlikely that he will tell them in the near future.
Svitlana explains that, while she is living in Donetsk, it is difficult to talk about the situation in the “DPR,” therefore the organization she works for is trying not to make its presence known. They are moving to Kramatorsk soon, and Svitlana is going with them. But the drawback is that she will no longer be able to go for medical examinations at the Donetsk AIDS center. According to Svitlana, this is where the remaining good doctors are.
Before the war, they were making serious plans to combat HIV/AIDS. However, it turned out that all the latest equipment remained in the territory not controlled by Ukraine.
“This is an excellent AIDS center with state-of-the-art diagnostic equipment, with great doctors. At the moment, the uncontrolled territory has better conditions, in terms of medication and diagnostics, than the controlled territory even,” Valeriya Rachynska explains. For this reason, she is certain that the HIV situation in the “republics” can be controlled. The main goal must be to keep up the work in prevention, including HIV-related illnesses. After all, almost half of people with HIV die from diseases like tuberculosis.
“If we want to avoid an HIV epidemic, we have to do everything we can to maintain access to medication for HIV-positive people in the uncontrolled territories,” Rachynska says. “So that there is access to programs that reduce the damage, to exchanging syringes, handing out condoms, and more. This is vitally important: not only for people living in the uncontrolled territories but for people throughout Ukraine.”
/By Yuliana Skibitska and Oleksandra Chernova
/Illustrations by Tasha Shvarts
/Translated by Sofia Fedeczko