Crossing the frontline to reach prisoners with HIV treatment in Russian-occupied Ukraine

  • In the seven years since Russia invaded Valeria’s home city, she lost her home, her husband, and her idea of what the future looked like for her sons.
  • Despite this, she has never lost her drive to fight injustice and health inequity, which led her to transport life-saving drugs across the frontline, risking her life to save other peoples.

Interviewed by Gemma Taylor.

“I don’t have many older pictures to show you,” says Valeria, 39. “We had to leave our home, and everything in it. It’s all still there, but we can’t go back.” Valeria had bought her apartment in Luhansk, part of the Donbas region in eastern Ukraine, which is occupied by Russian forces.

“Initially we thought Ukrainian soldiers would come and the craziness will end. But it didn’t stop. The war was getting closer and closer to our door, so I had to make the decision to send my kids away. We found a holiday camp near the sea, we thought it would be better for them – and that it would just be for two weeks or a month.”

Seven years later the occupation is continuing. At least 14,000 people have lost their lives, including civilians and volunteers, and there are an estimated 1.5 million internally displaced people across the rest of Ukraine. Valeria and and her sons are just three of them.

Valeria, Head of 100% LIFE’s Regional Department, in her new home Kyiv. © Gemma Taylor/MMA

“Soon after, once the boys were safe, my husband and I also left Luhansk, while we waited for things to return to normal. When we realised it was getting worse, not better, we had to go back.”

For most people it would be counter-intuitive, to head back into danger, rather away from it. However, Valeria’s husband had established a community organization, and they knew people needed their help.

“The first day we got back I went straight to the prisons to see what was needed. I was told they were down to the very last of the HIV medications. They would have no more after this as deliveries weren’t being made. Doctors couldn’t make deliveries themselves because it was too dangerous. We contacted large institutions with peacekeeping and humanitarian mandates to see if they could help deliver essential medicines, but we were told they couldn’t help either because of ‘security rules’, or ‘because of the shelling’, or ‘it’s not our mandate’.
I was aghast – I suddenly realised that if we didn’t do it no-one would do it. I thought no-one gives a fuck about our fucking HIV. I was furious.”

“So we did it. We did it without armed vehicles, international protection, protective gear and big salaries.”

While Valeria viewed returning to their apartment to collect personal possessions an “unnecessary risk”, according to Valeria crossing the frontline to get treatment to prisoners was essential: “This was necessary, many more people would have died without us.”

One of the few old photos Valeria still has is of her grandma. “Her name was Zinaida and she may have been the Soviet Union’s first feminist!” says Valeria. “She motivated us to be winners, protect people that cannot protect themselves and tell the truth loudly.” © Gemma Taylor/MMA

“The Russians had split the region in half. Not only were the prisons on both sides of the divide, but drugs that must be taken in combination were also different sides of the frontline. They only way to reach the medicines, and the people who needed them, was to go directly through the battlegrounds.”

“We navigated checkpoints, to source what we could from with Donbas. We continued this way for a while but we needed more resources. We had no bank system, we had no mobile and internet connection, and as it went on, we had no food, water, or medication.”

“We realised that in order to help people had to move out. Our role as a charitable organisation is not to sit down and hold hands with people and say ‘I understand you have nothing, we are in the same position’ but to find the solution. So we headed to Kyiv where we could get a reliable supply of medication.”

“We were given 50,000 pills, with 100% LIFE’s support, from the stock intended for the penitentiary system. Government could not deliver it because they were not allowed to go to the non-government controlled territories. It was July, a hot summer, and it took about 12 hours to drive them down. The first prison delivery was very successful, no trouble, well, no serious trouble – basically if I don’t get shot then I consider it successful.”

“The next delivery took about three days. We had to get through a huge battleground with tanks everywhere. I was driving in one direction, when suddenly there was firing all around me, so I had to turn the car around and drive quickly in the other direction.”

“I’m a mother of two kids, so I’m thinking fuck it, fuck it, fuck it, let’s go back home! Then the firing stops. We were pretty scared, but once we calmed down we drove back towards where the shelling had stopped. We started driving again, and it starts again,” Valeria exhales deeply, putting her hand to her chest. “So, we turned around again.” Then she laughs. “After going up and down, up and down again, my husband turned to me making a bored face, and jokingly said: ‘can you just make up your mind which way you are going!’”

“In the end we waited another night. I talked to locals about what time shelling usually happened, and when patrols and arrests were made. I decided it was safer for me to go on my own, by taxi.”

Valeria with her two sons. © Gemma Taylor/MMA

“A lot of people, civilians, have been arbitrarily arrested and tortured or killed in prisons, or shot on the spot, because they did not have the ‘right registration’ – because they are Ukrainian.”

Valeria’s husband’s documents could endanger him, and the people he travelled with. “Each time we crossed a checkpoint we had to show our passports and registration. My husband was registered in western Ukraine, so he was Enemy Number One to them – the further west you’re from, the more anti-Russian and pro-Ukrainian they presume you are.”

“The taxi drivers are also a good source of information, on the shelling times and best routes. Still, I had to ask six drivers before I found one who would take me. We covered the car windows in paper and wrote on it that there were kids inside.”

“Just doing my job”

“I only got arrested two times. One of the times was after being searched at a checkpoint. I was travelling with two colleagues and we a lot of medication in one of our cars. ‘Ukrainian volunteers?’ they asked. ‘No, no, no’ I said.”

“‘I’m local’ I told them, talking rapidly. ‘I’m a social worker, here’s my registration, it’s medication for the prisons. I get paid for this – not a volunteer. They asked: ‘Why do you care about these fucking prisoners – you have to help normal people’, I told them, ‘I have an agreement, it’s just my job’.”

“Then they asked me if I have the paperwork or approval from the new Ministry of Health, from the fake ‘Luhansk People’s Republic’. I started to laugh uncontrollably, I think it was hysteria. On one side I was crazy afraid, but on the other hand, it’s all bloody theatre. These guys from Chechnya and Russian Cozaks – you know with the big hats – they’re patrolling Ukraine, decorated with guns, and grenades, and knives here and there,” Valeria says indicating to different points around the body. “They’re just puppets, but dangerous puppets. They’re telling me what my mandate should or shouldn’t be and yelling about a fucking Russian republic?!”

“So the stupid checkpoint guys, they couldn’t understand about the medication, or make a decision themselves, so they drive us to a military commandant’s office of the fake ‘Luhansk People’s Republic’ to decide. I realised if they looked at my smartphone it wouldn’t be hard to find pro-Ukrainian posts, e.g. on my Facebook. I got everyone to bundle their phones in a bag and chuck it out of the car.”

“The gun was supposed to ‘motivate’ me to talk”

“As we approached the police station, barricades were drawn back as the vehicle pulled in, past lines of people with more guns.”

“The first questions was ‘where is your phone?’. I explained how I only came out with my passport and documents as it was meant to be a quick local journey to drop off supplies. I was asked about the drugs; the purpose; the prisoners. Then someone new would enter the room and ask the same questions again. And then again.”

“I had a gun tapped at my chest. It was a deliberate attempt to appear more sinister and to ‘motivate’ me to talk.”

“At one point a woman in civilian clothes came in. I remember she said: ‘Do you really think I’m stupid? You tell me you’re a social worker and right now you have medication in your car worth 300,000 hryvnia [approx $11,000] and you want me to believe that someone will just trust a social worker with this amount – you’re a smart bitch’.”

“In the end they let us go. We were told, ‘next time, if you don’t have the right documents, you will be going to prison, but not that one’.”

“Another time, some guys shot near the wheels on my car. After some confrontation, or negotiation, I paid them some money and I got through.”

“Despite these moments, in a year and a half, I never had an unsuccessful delivery. I never lost a single pill, or a single person from my staff. No-one was imprisoned and everyone was safe.”

How Valeria got into prison work

While Valeria had to pretend she didn’t care about prisoners in order to get life-saving medication delivered, the rights, and plight, of prisoners is something she feels very strongly about.

“Before I got into this work I was unaware. I’d say my life was perfect, I loved my job, my flat, I never had any family or friends reject me because of my HIV status and I thought it was the same for everyone else.”

“My future husband told me: ‘Valeria, I’m very happy that everything in your life is so bright, but not every HIV positive person has same privilege’. He talked a lot about wanting to set up a community organization. I came from sales, where no-one cares how nicely you talk to them, they just want to know how many bottles of vodka you’ve sold – so I saw it the same way – stop talking, start doing. And he did.”

The organization was first registered independently and later become a registered Luhansk Regional branch of 100% LIFE, which is an MMA partner (known at the time as the All Ukrainian Network of People Living with HIV).

“When the prison project got started I saw things that I’d never seen before, and I realised I would never go back to sales. I never knew before what one person could do to another person – and with the permission of society.”

“I couldn’t live the way I was before while knowing this injustice was happening right here, right now, in my city.”

“The idea of prison is that if you commit a crime, you make some mistake, you have your liberty taken away. It’s already a very big punishment. Who decided to add hunger, to add cold, torture, rape, and humiliation? Sorry, but where in our criminal code is it written down that it has to be like that?”

“It’s already too much to spend your best years in prison, but why make it like this? Who let you do this to another person? This make me cry?.”

“My kids can never go back”

Valeria, Head of 100% LIFE’s Regional Department, with her two sons, during a school assembly for mothers, for International Women’s Day. © Gemma Taylor/MMA

Valeria is now settled in Kyiv with her two boys. “They’ve been through too much. My eldest especially as he can remember more. I was 21 when he was born, and I made it my mission to make his life nice. I wanted him to have a ‘full package childhood’, a father, a house, etc. His small world was so good and then it just stopped, it was taken away. I know it’s not my fault, but I still feel guilty that I couldn’t protect him.”

“He didn’t get angry, he didn’t stop showing love to his family. He’s a very special boy, kind and big-hearted. I’m a proud mother. I’m not easy, I’m demanding. They’re very gentle and they do what they can to help, really I’m so happy.”

“My friend lives with us too, four of us in this apartment. Before the war he had a successful business, and his own big  house. Now he sleeps on the floor under my son’s desk. He’s 48”. Valeria and her youngest son sleep in the front room.

“So many people lost everything.” There are an estimated 1.5 million internally displaced people across Ukraine. Valeria and her sons share their apartment with a friend from their old city. © Gemma Taylor/MMA

“My son’s reaction to my HIV status”

“I told my eldest son about my status around two years ago. I wanted to let him know earlier but first there was the war, then his step-father died (due to causes unrelated to the war), then we moved to Kyiv. There was always too much going on.”

“He knew I took medicines for something and so he asked me what it was for. His reaction was relief. He said ‘Thank God! I thought it was cancer, it’s just HIV’. He was glad it was HIV, because he had been worrying that it was something much more serious!”

“I had talked to him already about HIV, and  medication, and life expectancy when people are on drugs – that sort of thing – but up until then he thought it was just part of my job. His reaction tells me that people just need information in order not to have stigma and fear. I want everyone in the country to have the same reaction.”

“I was relieved to tell my sons, as it meant I could now also be open in public. In my job I have appeared on TV as an expert. I don’t want to be just an expert, I want people to know that I myself and living with HIV, and to look at me: I have my two kids; I have a Masters degree in sociology; I’m an international expert in HIV and human rights; I’m English speaking; I influence policy making; and I’m healthy.”

My little one is green-fingered. Everything he puts in the soil starts to flower. At age 4 he came home with a dirty wooden stick. ‘It’s my plant,’ he said. I told him it wouldn’t work, but now it’s a tree. © Gemma Taylor/MMA

“If you reduced HIV stigma, you’d reduce the treatment gap”

“If people with HIV continue to get ill, or to die, then naturally this fuels fear and stigma.”

“One reason for there being a treatment gap is that, even now in 2021, some people think HIV is a ‘death sentence’, they don’t know that treatment exists. Why would you want to go and get a test, to risk seeing a positive result, if you think there’s nothing you can do about it?”

“Do you know what the first thing people have to do after testing positive? Is it to have counselling? No. It is to sign a document to confirm that you aware that you care criminally responsible if you pass HIV on to another person. They put that in your medical documents forever. So right now, if you want to have sex with someone you’re a criminal.”

“So according to the country, each year, 13,000 people are going to suddenly stop having sexual partners overnight?”

There are 250,000 people living with HIV in Ukraine, less than half are on ART (140,000) and there’s an average of 13,000 new infections each year.

“The HIV epidemic can be ended, but the message is not getting out. In 2017, when CDC endorsed the U=U message (undetectable = untransmittable) I thought it would make headlines in  every paper around the world. HIV is an issue that affects around a billion people, 38 million people living with virus, plus their families and partners. U=U changes everything, but you forgot to tell the whole world.”

“If people know it’s not dangerous – that you can kiss them, you can fuck them, just make sure your HIV positive partner is on treatment – it would reduce stigma and more people would access testing and treatment as a result.”

“The price paid for my treatment should treat 3 people”

“It’s thanks to treatment that I can be safe and live the life I have. But when I think about the price of this bottle, $61 for a month, it makes me crazy because the generic one costs just $19 in other countries. If it was priced the same here, the HIV budget could go three times as far.”

“My life is in this bottle”. Valeria takes Aluvia. Two pills, twice a day plus Truvada once per day. For now, I’m happy with current regimen. The biggest danger with Aluvia is potential long-term issues that can affect the heart valve.” © Gemma Taylor/MMA

“Companies extend their monopoly, by evergreening patents, long after patents should have expired. They protect small changes, for example, how many times a day it needs taking, or producing a liquid version – but it’s still the same drug, it’s not new.”

“These tactics have nothing to do with innovation, just making money. Pharmaceutical companies are making billions each year. They know that Ukraine is in economical crisis; that the war is ongoing; that Ukraine has the second-largest HIV epidemic in Eastern Europe and Central Asia; and one of the highest rates of drug-resistant TB globally; and it is the poorest country in Europe. They know all of this, and still they keeping choosing to make more unjustified money, when when they know the impact.”

“They might produce the compound that was created to save our lives, but they kill us with their prices.”

“Applying the patent system to medicines just protected people who were already rich, not patients.”

“We’re not just fighting for justice, we’re fighting for our lives. People have died in my hands. Back in Luhansk I was telling people you’re not going to die, we’ll save you, we’ll support you. This was on a Friday. On Monday they were dead.”

“Sometimes I’d like to bring pharmaceutical industry reps to see people in the last stages of their lives. But I don’t think they’d change. It’s not their relative, it’s not someone they love, it’s just ‘someone’.”

“The war is still happening”

“The war is ongoing but there’s little, if any, attention from international media, and even national news has reduced.”

“Tell me, how much do people from Europe remember about Moldova, or Georgia, which still have occupied territories? Or how many people remember the conflict between Armenia and Azerbaijan after the Soviet Union ended [a conflict which reignited last year]?”

“Moldova, they didn’t deserve it; Georgia didn’t deserve it; and Ukraine, we don’t deserve it.”

Ukraine gave up its nuclear weapons in 1994. As a direct result, a memorandum was signed providing security assurances from Russia, the UK and the USA, against threats or use of force against the territorial integrity or political independence of Ukraine. France and China also provided assurances under different agreements.

“We gave nuclear weapons up in return for protection, no-one invades you if you have nuclear weapons, but where is the protection? We have lost Crimea. And this ‘war’, it is not a conflict as such, with two sides. Let’s call it what it is, Russia wanted our territory – it is a raid. We have thousands dead and 1.5 million displaced and the UK and USA pretends like it doesn’t exist.”

“More bravery than international institutions”

People in prisons in Donbas are still getting ARVS delivered by community organizations. “A ‘rapid’ response from international agencies did start to make deliveries around a year into the conflict,” says Valeria.

Community organizations are still filling in gaps, including two young women from Valeria’s regional branch. “I had told them not to carry out deliveries, that it was too dangerous, so no-one told me at first,” says Valeria. “These crazy girls they are just 45 kilos, they’re tiny, but they asked around about when the gaps in shelling would be and decided for themselves to make some trips. They explained to me simply, in their view, ‘no-one should die’.”

“These small girls, they have more bravery in them than the large institutions.”