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Human rights/the Netherlands

Activist Vera Varyga: "HIV-positive refugees are often afraid or ashamed to go to their family doctor and disclose their diagnosis"


Russia's invasion of Ukraine threatens the country's entire health system by increasing the risk of the spread of infectious diseases, including HIV.

According to forecasts by the Global Fund to Fight AIDS, Tuberculosis and Malaria, the war will further complicate Ukraine's already strained public health burden.

More than 250 000 Ukrainians are HIV-positive and if they do not have access to antiretroviral therapy this will result in more deaths and increase the risk of a renewed AIDS epidemic in Ukraine, says UNAIDS.

War in Ukraine poses the highest risk of a humanitarian disaster for people living with HIV, experts say.

There are about 8 million refugees from Ukraine living in Europe. Among them are vulnerable populations, including people tested HIV-positive.

Media Loft spoke with Vera Varyga, a representative of Positive Women in Ukraine and programme advisor for AFEW in the Netherlands, about who will help these people, and those left behind in the war zone, and how.

- Vera, you have been living in the Netherlands for some time now. What are the circumstances under which you ended up here?

- On February 24th, 2022, a war broke out. We woke up in the morning to explosions and realised that the worst had happened. The word "war" was hard to say out loud. We wanted very much to believe that it would somehow miraculously end. The information that was appearing in the pubs was shocking!

We got in the car: me, my two sons, my colleague. We took one rucksack each, filled with documents, underwear, and medicine. We took a small dog. We went to Cherkassy.

It took us a long time to leave Kiev. A lot of roads had already been blocked because Russian troops were closing in. A lot of people were trying to get out.

It was scary. There were explosions. We saw Russian vehicles, tanks on the roads. It was like a waking nightmare that for some reason wouldn't end.

We arrived in Cherkasy and the next day we realised that we could not go back to Kiev. We stayed in Cherkassy for a week. The chat room of our charity "Positive Women" was lit up with messages. We were exchanging messages, finding out what was going on with our girls in Chernihiv and Luhansk.

For the first week we watched the news all the time and didn't understand what was waiting for us and what was going to happen next. My sister, who lived in the Lviv region on the border with Poland, wrote to me that it was safer there. She said that we could go there, she would leave us the keys. So we decided to drive on. It should have taken about eight hours, but it took us more than two days to get there. Checkpoints, curfews, queues.

I was looking for a way to get to a computer as soon as possible - I couldn't bring mine with me. But I had to start getting back into a working rhythm, I understood that.

- Was it a difficult decision to leave your homeland?

- My husband knew that I could leave with my youngest son. But my eldest, who is already 20, would not be able to leave, because they don't let men over 18 out of the country. My husband insisted that I take advantage of this opportunity.

It was a very difficult decision! You don't understand how dangerous it is, how long it takes. But in the end we talked and he said it was very selfish of me not to go and therefore not to keep my youngest son safe. We agreed that he would take me to the border at six in the morning. As it happened, we hadn't even thought about the route.

I was invited to other countries, but we went to the Netherlands because the important factor for me was to be able to continue my work and be of service to the community.

I realised that AFEW International (dutch public health organisation dedicated to giving support to underserved populations in Eastern Europe and Central Asia) is our long term partner and that our goals are the same. They have offices in different countries, including Ukraine. They contacted me offering any support needed.

Vera Varyga with the AFEW International team

- How did your youngest son take this decision?

- The journey was hard. There was no internet, there was no bank card, the routes changed. I don't speak English, unfortunately. But my youngest son, aged 13, behaved like a grown-up, not letting me panic, and we made it.

When I woke up the first morning and heard the birds singing, it felt like everything was unreal. Everything was quiet and peaceful, and we were already used to it. Even on the first day of the war at home all the birds had disappeared.

I think it's impossible to get used to the war. Although some of my friends, who have stayed in Ukraine, say they do not pay attention to sirens any more and they are not afraid. It is still scary, absolutely everyone is traumatized.

- You said that it was principal to continue the work you started in your home country to help refugees with HIV. How is this organised?

- There is already a lot of work being done with psychological support for those affected by the war. Our organization is called Positive Women. This is a community of HIV-positive women in Ukraine. The organization provides humanitarian and legal assistance and social support. All consultations are conducted by our female staff members who are also living with this diagnosis, that's why communication takes place on an equal footing.

In Ukraine, there is a very high stigma (negative attitude or perception about mental, physical or social characteristics of a person or a group of people, social disapproval) towards HIV-positive people compared to what I see in the Netherlands, for example. There are discriminatory laws (and combating them is a separate activity for us).

That said, self-stigma also has a big impact on people - and men's self-stigma is different from women's self-stigma. I suffered from this problem myself: I got registered as HIV-positive and received medication. But many people still find it psychologically difficult to say that they have a diagnosis.

When they come here, to the Netherlands, they are afraid to go to the family doctor because the medical system is different here. They are afraid to talk about their disease. They are used to being treated in AIDS centres in Ukraine.

Before the war, medical reforms were already underway and changes have been made so that people living with HIV can see a family doctor if they are not at an advanced stage.

But people are still really afraid to disclose their disease as they have met with negative attitudes in medical institutions.

Many came, particularly here to the Netherlands, even without medication, because they thought the war would not last long. And daily medication should never be skipped for an HIV-positive person! Complications can occur, the virus adapts to the medication and a new treatment will be difficult to adapt to. If the medication is successful, the viral load will be reduced to an undetectable level. This, however, does not mean that the virus is not present.

With a count of less than forty cells per cubic metre in the body, the virus will not be transmitted to a sexual partner, or if pregnant, to the unborn child.

Controlling the virus in an infected person's body is the most important thing. This has a direct impact on a person's life, and makes it possible to plan one's life and stop epidemics.

HIV-positive people who come to the Netherlands do not register immediately, because they have faced disclosure of their status in their home countries, including by the health services. Those who have settled in social housing fear being thrown out on the street. Those who have been taken in by foster families are not without this fear either. They find it difficult to believe that HIV-positive people can be treated differently.

"Positive Women", meeting of representatives of the organization

- How is the work of your colleagues in Ukraine going now?

- I am very happy that we have maintained offices in all regions of Ukraine. Except for Luhansk oblast, where it is impossible to work in today's conditions. Our representative in Luhansk was out of touch for a long time. In the end, she managed to get through to Russia.

Today, we have opened many 'shelters' in Ukraine where HIV-positive women and their families have the opportunity to evacuate from the hot spots.

In the first months of the war I kept in touch with them, and now we have three self-help groups a week.

The realisation that I was here and they were there was extremely motivating for me. I immediately started looking for both funding and humanitarian aid.

- What projects are you involved in in the Netherlands?

 - AFEW International was immediately involved in helping HIV-positive people and people at risk in Ukraine. We spread the word that I was here through official resources and Facebook. Refugees with HIV contacted me directly.

I tell people literally step-by-step how to proceed, to the point where I sometimes explain how to make a smartphone automatically translate text into Ukrainian, because not everyone speaks and reads English. This is why, together with HIVVereniging, we have also made a special booklet for HIV-positive Ukrainian refugees and a separate section on our website with the most common questions that might arise, from guidebooks to how to obtain medication.

We recently completed a project with AFEW International on the stigma of women in relation to HIV. This topic is particularly close to my heart and I am glad that we were able to take another step towards breaking down stigma.

The AFEW team gathered humanitarian aid and we organised a support group.

During the war, along with AFEW, we implemented a project to counteract stigma in Ukraine. It focused both on informing the general population and on supporting women living with HIV themselves in overcoming self-stigma.

This is very important and relevant right now, when women with HIV are displaced with their children across Ukraine because of the war and have to build new ways to communicate, see new doctors and stay in shelters.

Being in the Netherlands, I can see how important this is for Ukrainian women, because when they flee the country and find themselves in a new environment, self-stigma (fear of someone finding out about your disease; low self-esteem due to HIV, etc) is a barrier for women both in terms of self-actualization and in terms of access to quality health services that are available in Europe.

We have also initiated a new project with AFEW International for Ukrainian refugees living with HIV in Poland. Most of those who have left are staying in Poland. The project aims to involve HIV-positive people themselves in the development of new programmes and services tailored to their needs.

The Netherlands gives migrants the right to work. And the locals are surprised that 70 percent of the Ukrainians who have arrived have already found a job.

It is important to understand that not all people are aware that they have HIV, so prevention among refugees cannot be overlooked either.

- In your opinion, how will the fate of HIV-positive people in Ukraine develop under the conditions of full-scale war?

- HIV-positive people remaining in Ukraine are provided with therapy, but they don't always have access to centres where they can get help. Especially in places of active fighting. And this is another big problem. However, HIV service organizations continue to operate, sometimes in very difficult conditions.

One of my colleagues in the first weeks of the war, along with her husband, carried medicines to all the districts by bicycle, because transport was not available. The war mobilised everyone.

- Vera, how do you see your mission?

- My mission is to involve the community of HIV-positive people in addressing issues that affect their lives for themselves. Because institutions created from outside, by someone without first hand knowledge of the issue, will not work.

I always advocate for people to be active themselves.

My challenge is to ensure that women who find out they have HIV do not go through what I went through in the 2000s when I found out about the diagnosis. Not to go through the self and external stigma but to be heard and helped in a timely manner.

When they helped me, I forgot about my education in the field of finance and went into social work. This is my life. When people ask me what your hobby is, I say I don't have one. Everything I do is aimed at helping HIV-positive people.

If you have any questions about support for Ukrainians with HIV in the Netherlands or Poland, please write to

Photos from the personal archive of Vera Varyga

War payment. How European aid to Ukrainian refugees is changing a year after the start of the Russian invasion

War payment. How European aid to Ukrainian refugees is changing a year after the start of the Russian invasion

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