Living With HIV in Occupied Donbas

Editor's Note: This a Spektr project, with the support of the Russian Language News Exchange. This project has been adapted by Hromadske International. 

There are around 18,000 people with an HIV-positive status living in the self-proclaimed “Donetsk People’s Republic”, according to data from the All-Ukrainian Network of People Living with HIV. Across Ukraine, according to the Ministry of Health, there were 244,000 people at the end of 2018, and only 141,000 of them have been registered with medical institutions. This is not a disaster, this is an epidemic. But for many involved, this word is just a working term, just another thing to tolerate, just a part of life.

Who is Helping People With HIV in the DPR?

Local authorities treat collection of information about HIV inside the “DPR” almost like espionage. Last year, activists from the All-Ukrainian Network of People Living With HIV released a report at an HIV conference in Moscow. But after the first announcement about the conference, with excerpts of statistics on the number of people with HIV in the non-government controlled territory in the Donetsk region, a scandal involving the “DPR State Security Ministry” erupted. The leakage of any information from these places can be interpreted as ideological sabotage – at the very least – and as espionage, at worst.

“Our position is this,” says network leader Dima Sherembei at the Kyiv office. “First, we treat this territory as Ukrainian territory, second, this will never change, and for this reason we don’t want an army of 100,000 sick people as a result of this conflict. A simple technical opportunity to contain the outbreak of the epidemic is to legally supply therapy, testing and a way of diagnosing people in any possible way through international charitable systems.” 

Leader of the All-Ukrainian Network of People Living With HIV Dima Sherembei during a protest against patenting some medicine. Photo: Spektr

“International statistics are simple – one person with HIV who does not get therapy infects an average of 1.5 people per year. So, if in the first year of conflict we had 18,000 people, then in the second there could have been 40,000, the next 90,000. By the fifth year of the conflict, we could well have had 100,000 patients, then they become incapacitated, and further problems develop. You would need a budget of around $1 billion to treat 100,000 people after the conflict. We are now carefully... saving this time bomb so that it does not explode later. This isn’t a controlled process, really, but it’s the least that we can do today: to use international approaches to such situations,” Sherembei says.

Sherembei (R) at one of the events organized by the All-Ukrainian Network of People Living With HIV. Photo: Spektr

“Global Fund to Fight AIDS, Tuberculosis and Malaria, through the humanitarian corridor that exists there, heals, tests, diagnoses and controls about 24,000 people (who live in the uncontrolled areas of Donetsk and Luhansk regions). Of course, not like in the government-controlled territory, but this is the least that we do in the current conflict situation. Unfortunately, there is no way to do anything else,” he adds.

Sherembey is believed to have the most comprehensive information on the number of people with HIV and those receiving therapy. Spektr was also able to obtain comparative “pre-war” figures and statistics at the end of 2017. These are the figures that guide the Global Fund. In 2014, 20% of Ukraine’s population with HIV lived in the Donetsk region – that’s 28,959 people, while 3% or 4,662 lived in the Luhansk region.

As of December 27, 2017, in the government-controlled territory of the Donetsk region, 13,501 people were registered at the dispensary and 7,393 patients were receiving antiretroviral therapy (ART). In the uncontrolled territories there were 16,105 and 8,567 respectively.

In the government-controlled parts of the Luhansk region there were 2,123 people with HIV, and 1,543 patients receiving ART. For non-government controlled areas these figures were at 2,652 and 1,624 respectively.

The self-proclaimed “DPR” and “LPR” republics take up about 30% of the pre-war Donbas region. Since the start of the war, it is estimated between 2.5 and 3 million people have fled the occupied region.

Funding the Fight Against HIV 

Spektr has obtained a Ukrainian interagency meeting protocol on the implementation of Global Fund programs in 2018-2020 in non-government controlled territories. There, it is reported that the total budget "for patients in temporarily occupied territories for 2018-2020 is $11,485,370” for drugs and medical supplies.

Banner says "take the test - live 100%." Photo: Spektr

From this and other documents, it can be concluded that the practice of financing the fight against the HIV epidemic in unrecognized territories has long been established in Abkhazia and Transnistria.

In Transnistria, all types of therapy and their support programs are also 100% funded by the Global Fund. Medicine is stored in Moldova and transferred for distribution to accredited local public organizations. Transnistrian authorities do not provide treatment nor coordinate with the Global Fund.

In Abkhazia, the coordination of programs to combat the spread of HIV goes through a bilateral permanent working group of the Georgian-Abkhaz Coordination Commission. As for the rest, Abkhazia receives funding for prevention programs, therapy and testing from the Global Fund, which also provides the territory with medicine through warehouses in Georgia.

A kind of symbiosis occurs in the occupied territory of Donbas from the practices already established in Transnistria’s capital of Tiraspol and Abkhazia’s capital of Sukhumi – there are no official coordination commissions between Ukraine and the self-proclaimed republics but everything else works as it does in Abkhazia.

A campaign by the United Nations Population Fund. 

At the same time, all negotiation platforms are non-public, informal, and agreements are extremely fragile.

There is an absence of public organizations that aid people with HIV and are officially accredited by the “DPR”. This is a structure that is difficult to understand from the outside, but extremely important for survival in the “DPR”. A network of social activists helping HIV positive people since the pre-war era has been preserved; in 2014 one of the organizations even managed to officially register with the “DPR” but did not receive accreditation. The entire HIV help network in these territories operates semi-legally, but at the same time, it has access to prisons, chief doctors of hospitals and departments of the AIDS prevention and control centers. The only difference is that they used to be called “regional institutions”, but now go by the name “republican”.

In 2014, the state anti-AIDS centers and, most importantly, their warehouses and laboratories in the Donetsk and Luhansk regions were preserved. A significant amount of drug supplies also remained in these regions. That was enough for the initial period. Then, various international charitable organizations transported medicine through the demarcation line. Sometimes, in critical situations, social activists would drive them in their cars. But all this is a complicated and dreary affair – it is necessary to ensure the medicine is in a temperature controlled environment and be prepared to convincingly explain why this is not “financing of terrorism” or not “subversive activities of [Ukraine’s Security Service] agents" at each checkpoint.

For this reason, anonymity has been granted to sources in this story.

As part of this story, Spektr has conducted interviews with two women who work with HIV-positive people in the occupied Donetsk region.

They have been living normal and quite successful lives with HIV for more than a decade, and even help others – such as residents of Donetsk, Makiivka or Debaltseve – to cope with the new diagnosis, without any political discrimination.

Living With HIV

Tetiana and Iryna are successful, confident women. We meet near the center of Donetsk in a place where they provide assistance to people like themselves. Group psychology sessions are held here for people who have just learned about their diagnosis.

“We were the founders of this place in 2015. When the first economic blockade began, we were told that we would need to re-register in the government-controlled territory and regularly go there, receive therapy – so we went,” says Tetiana. “We went to get the medicine in Slovyansk because that’s where the reserve stock was for all territories – we were able to get there without any problems, but those who were bedridden couldn’t. So, then we helped to make passes en masse so people could be authorized to cross the demarcation line and collect the medicine on behalf of bedridden patients...  Unfortunately, it became clear that this wouldn’t work, bedridden patients would not be able to receive therapy – they needed to somehow get the medicine through checkpoints in Donetsk and get the anti-AIDS center to refill it. The medicine was brought by activists from the All Ukrainian Network of People Living with HIV – in packets, bags, and sacks. Until humanitarian supplies were organized.” 

“The first to transport a substantial amount of stock were Doctors Without Borders,” she continues. “But they were refused permission to cross the checkpoint. They spent the night in Kurakhovo, and after the first time, refused to transport the medicine. They got through that time, but the delivery wasn’t simple – they carried HIV tests, which needed to be in a temperature-controlled environment. They didn’t come a second time. Then there was UNICEF,  the Donbas Development Center, International Red Cross – they all brought medicine across the demarcation line. Here, the state anti-AIDS centers take responsibility.” 

Tetiana says many moved from the occupied territories to Russia but they couldn’t get therapy with a Ukrainian passport, so they returned. In Russia, like in Ukraine, therapy is only accessible to citizens.

- Are there many people with HIV armed with machine guns? 

- No... We don’t have a single one here in the "DPR.” They are also fired from the army immediately if they test positive for HIV. There was an order, they tested everyone more than once and then let go anyone who had it. And only then do they come to our psychological assistance groups, often with a bottle in their hands – no longer military men.

- Tetiana, what’s it like to live with HIV?

- I’ve lived with this status for 15 years and I have always been surrounded by people who are somehow connected to this. I am a psychologist and always tell my clients in these cases that they are lucky. Everyone laughs at me at first. A pregnant girl came in, found out about her status and cried. I said to her: “You’re lucky!” – and I'm serious.

There isn’t this tremendous amount of support, there are no psychological support groups for patients with diabetes but there are for patients with HIV. They are most often run by activists from the Network of People Living With HIV or, like in Russia, by self-organized groups. Psychological help is necessary because diabetes doesn’t cause panic like HIV does. They sympathize with a person with diabetes at most – a person with HIV can get a separate cup, bowl and people will be afraid to kiss them!

What do I teach in self-help groups? The group exists primarily so that people can learn to say "I have HIV!" out loud in this circle. That’s how the process of acceptance works. Self-help groups are a platform that helps everyone learn how to live with HIV.

Groups always change. I remember one group of girls – they didn’t take drugs and were socially set up in life. This group began to take on a life of its own: exchange recipes, help each other get medicine – and I am happy about this sincerely because people are successfully learning to live with HIV.

If the rights of people with HIV are somehow violated, then – my goodness! They hate us in hospitals. Because there is always someone to defend our rights, not everyone has that.

Iryna recalls going to the dentist after learning she was HIV positive and being honest about her diagnosis.

“They wrote HIV in red letters on the cover page of my medical card in my hometown! I immediately realized that I was no longer trusted here. We don’t live in a big city, many of my friends go to the same dental clinic. I don’t ever go there now. I don’t know what happened to that card, it’s probably in the archive. It’s been more than 10 years now,” says Iryna.

- Iryna, what is the attitude toward people with HIV today?

- Stigma and discrimination is everywhere. And despite the fact that I believe that I was lucky to have detected my HIV status early, of course, there are problems – I still don’t advertise the fact that I have HIV, only those in close circles know about it.

- Is there a difference in approaches to therapy? 

- A year ago, I would have said that Ukraine is more advanced, but after talking with HIV-positive Russians in Russia during our get-togethers I realized that they also have good medicine in their mandatory protocols.

The Global Fund to Fight AIDS, Tuberculosis and Malaria helps with the purchase of supplies, and Iryna says the local authorities of the occupied regions don’t intervene in this process. No budget funds are allocated there. She says that a drug like Dolutegravir (antiretroviral medication used as part of a treatment regimen recommended by the World Health Organization) in the self-proclaimed “DPR” appeared a year earlier than in government-controlled territory, because in Ukraine it is bought with state budget money, which is always tied up with bureaucracy. On the whole, according to Iryna, the supplies were newer in the self-proclaimed “DPR” – or at least they used to be. And there were enough of them, Tetiana adds.

In June, Ukraine’s Ministry of Health reported that every HIV patient had the right to free treatment for life, which meant that those living in the occupied territories had the task of getting to medical facilities outside the "DPR". Now, for many of Tetiana and Iryna’s friends, the procedure for proving their HIV status and receiving therapy, for which they need to travel to government-controlled territory every month, means additional financial costs and a lot of hassle.

The Donetsk region used to be serviced by a medical center with the best doctors, equipment, and resources – today it only works in the occupied part.

“There was one big problem – for a year we did not have testing systems for CD4 (a glycoprotein on the surface of immune cells), so it was not possible to change the therapy. In fairness, I must say that on Ukraine-controlled territory there were also problems with testing systems,” recalls Iryna.

According to Tetiana, people with HIV have different stories; some are trying to lead healthy lives, others have turned to street drugs and struggle to live for 2-3 years.

Iryna says that she has seen many die from AIDS, but all these people didn't take medicine or stopped taking it at some point.

A person takes an express test for HIV. Photo: Spektr

As for transmission of HIV, she says the most common way isn’t through drug use but rather sex. But this still causes disapproval: “You can ask anyone what they think about people with HIV and they will tell you what good and positive people they are, but if you tell them that their neighbor has HIV, the next question will be: 'What? And whom did she hook up with?' They often condemn it, but still, if the public is informed about ways of transmission, it’s much better. The fact that people are no longer afraid to drink tea with you is very important.”