Ahead of AIDS 2026 and as part of the Rethink. Rebuild. Rise. campaign, VirusOFF continues its series of stories on what HIV prevention looks like today in Central and Eastern Europe and central Asia: not only in strategies and international discussions, but also in the real lives of people facing stigma, migration, instability, language barriers and complex healthcare systems.
We spoke with Armen Aghajanov, co-founder and board member of the VirusOFF public organization and the regional media platform of the same name, a public activist and project manager of the regional project RefAid BaltHUB, implemented by the Estonian Network of People Living with HIV (EHPV) in partnership with AGIHAS in Latvia and Association Demetra in Lithuania, within the BaltHUB initiative and with support from the Swiss State Secretariat for Migration. The project aims to strengthen coordinated access to information, referral pathways and support services for people displaced from Ukraine and living in the Baltic States. It places particular focus on people living with HIV, key populations, women with children, LGBTQI+ people and others who face barriers in accessing mainstream services.
Armen, how has your understanding of HIV prevention in Central and Eastern Europe and central Asia changed in recent years?
Yes, it has changed — quite significantly. Especially in the understanding that HIV prevention is first and foremost about people, not only about specific services.
When I first became involved in activism and started working in this field, I thought the most important things were information, access to testing and modern prevention methods such as PrEP. At that time, PrEP was not yet widely known or accessible. Access to treatment was also extremely important to me, because when I learned about my own status and started working in this field, the restrictions on starting treatment were much stricter.
Back then, people had to wait until their CD4 count dropped to a certain level before they could receive treatment. I experienced this waiting myself, and even then I understood that this approach could not be effective.
All of this remains important: testing, treatment, PrEP and access to information. But over the years, after many meetings, conversations and stories from different countries and communities, I saw that the conversation almost never starts with HIV. People more often speak about fear, loneliness, stigma, discrimination, a lack of clear and reliable information, and the inability to navigate a new healthcare system — especially when we talk about Ukrainians who have moved to other countries.
Sometimes a person simply does not know who they can talk to. That is when I understood one simple thing for myself: we cannot speak effectively about prevention if a person is simply trying to cope with their life at that moment.
Today, prevention for me is much broader than medicine and access to medical services. It is about trust, respect and the possibility of receiving help without judgement, discrimination or hidden stigmatization. It is about access to clear and reliable information, to community and to people one can trust. I think this approach is especially important for our region today.
In your view, what is most often lost at the official level in conversations about HIV prevention?
I think we talk a lot about systems, reports, strategies, indicators, coverage, budgets and targets. All of this is necessary and important. But sometimes the person disappears behind the numbers.
When a person is afraid to seek testing because of stigma or fear of discrimination, that is also part of prevention. When an adolescent cannot ask a question about sexual health, that is also a prevention gap. When a person living with HIV stops seeking help because they are tired of discrimination, even hidden discrimination, that is also part of the prevention conversation.
I increasingly think that the main indicator of successful prevention is trust. If a person trusts the system, an organization, a doctor or a peer counsellor, they will come back. If there is no trust, no modern programme will work effectively. Prevention does not work without a human, humane attitude.
Last year, the RefAid project was launched in the Baltic States. It works at the intersection of HIV, migration, humanitarian support and peer-to-peer support. What requests do Ukrainians most often bring to the project?
The situation is quite similar not only in RefAid, which works in three European Union countries, but also in the humanitarian projects that VirusOFF implements inside Ukraine. Most often, people do not come with only one request.
Even when someone says, “I need help with treatment”, “I need access to antiretroviral therapy” or “I need help with documents”, this request very rarely remains the only one. Usually, people’s needs are connected.
Someone may want to continue treatment but also needs to understand health insurance and access to treatment in other areas. Someone may be looking for housing and not know where to turn, while also needing psychological support. Someone may be experiencing severe anxiety after moving. Someone else may need help with integration, documents or finding a local organization.
RefAid is built around comprehensive support. We try not only to answer a person’s question, but to help them move from the first request to actually receiving the help they need.
We see a similar situation in VirusOFF’s humanitarian work in Ukraine. Even when a person asks for one type of support, it often opens doors to other opportunities. For example, through humanitarian assistance, a person may connect with prevention projects, return to treatment or receive information about other services.
A request is rarely only one request. Sometimes it becomes a second, third or fourth request a month or two later because people’s needs change. And perhaps the most valuable thing in RefAid is not a ready-made answer, but the understanding that there is someone nearby who will help the person navigate the situation and direct them to where they can receive support.
When we talk about continuity of treatment for people in migration, where does this pathway most often break down?
For me, continuity of treatment is not a simple issue. Moving to another country should not mean that a person has to start their treatment journey from scratch. But in practice, this is where the biggest challenges arise.
There are different healthcare systems, different rules, another language, different documents and sometimes different treatment or a different manufacturer of medicines. It may feel unfamiliar to a person: before there was one pill, now there is another; before it looked one way, now it looks different. Sometimes one missed step is enough for a person to get lost in the system and no longer understand what to do.
That is why, for me, continuity of treatment is not only about having medicines. It is about having a clear pathway for the person: where to go, what steps to take and who can help along the way. It is about cooperation between organizations, countries and specialists so that a person does not fall out of the system simply because their place of residence has changed.
I can also speak from personal experience. I am now living in the fourth country in my life, including the country I come from. Each time, I had to go through different pathways to access treatment again. In each country, there were different systems, different rules and different steps. Sometimes it is very difficult to figure this out alone.
That is why partnership, cooperation and comprehensive approaches by different actors are critically important, especially when we talk about support for migrants and refugees.
What role does VirusOFF play in the region as an information platform? What can a regional media platform do that a donor, official institution or medical facility cannot?
I think high-quality information in itself is becoming a prevention tool today. This is especially true in our region, where people often face myths, unreliable information, stigma and discrimination, sometimes even from healthcare workers.
Platforms like VirusOFF can quickly explain changes taking place in the HIV field, talk about new recommendations in simple language, show real stories of people and help communities and organizations share both positive and difficult experiences.
This gives people the opportunity to ask questions without fear. When a person reads other people’s stories, they see that they are not alone. This kind of information helps people move forward and gradually builds trust.
It is important that VirusOFF speaks to people in language they can understand: about new research, the work of organizations and the situation in different countries, including both successes and challenges. Often, people first read accessible materials, including community-led materials, and only then go to a doctor with some basic understanding and knowledge.
Information becomes the first step towards support, prevention or treatment. That is why the main role of VirusOFF is to provide high-quality information as a tool for prevention and support.
People on the move often fall out of services. What approaches help prevent this?
Probably everything you mentioned works: digital navigation, peer counselling and emergency support. For me, the main conclusion of recent years is that there is no single universal solution. Combinations of different approaches work best.
Peer counselling and services provided by people from the community create trust. Local organizations know the specific features of their country and healthcare system. Digital services help people quickly find the information and services they need, no matter where they are. Telemedicine makes support more accessible. Partner and regional networks make it possible to direct people more quickly to where they can really receive help.
Emergency support can also become a factor that helps a person continue treatment or access other forms of support. When all these elements work together, a person feels that they are not alone.
In your view, what do donors sometimes underestimate when they talk about supporting people on the move and HIV prevention in our region?
I think the human factor is sometimes underestimated. We are used to thinking in terms of projects, grants, implementation timelines and indicators. But a person’s life rarely follows a project plan.
Today, a person may need humanitarian assistance. A few months later, they may need psychological support. Later, they may need help with work, accompaniment, return home or integration services. That is why it is very important to build flexible programmes that can adapt to people’s real lives.
We cannot think only in terms of limited indicators and project lines. We need flexibility and a focus on people, because the needs of people and communities change.
Sometimes a project proposal is written at one point in time, but while it goes through all the review and approval cycles, part of the support becomes less relevant or requires a different format. For example, seasonal winter assistance may be planned for December to February, but the project is approved only in mid-March. This support may still be needed, but not in the same volume or form.
A similar logic applies to RefAid. When we planned the project, we expected a certain number of requests for voluntary return to Ukraine, because this service had previously been in demand. But attacks on civilian infrastructure in Ukraine, including in cities and regions that were previously considered safer, are changing people’s needs. What seemed like a possible solution a year ago may now be unsafe or no longer relevant.
That is why it is important that programmes can adapt to real situations and to the real lives of the people we work for. Support also needs to be long-term. Trust cannot be built in a few months or through only one type of service.
How should success be measured in programmes such as RefAid or VirusOFF’s humanitarian projects? Is it the number of consultations and assistance provided, or is it also trust, reduced anxiety and a person’s return to the system?
If I speak a little idealistically, for me the success of a programme would mean that its services are no longer needed because there is no longer a need for them.
But realistically, quantitative indicators are, of course, necessary. We need to know how many people received support, how many consultations were provided, what type of assistance was given, how many people were referred to services or returned to treatment.
But the most important results often cannot be fully shown in tables and reports. When a person is no longer afraid to ask for help, that is already a success. When a person knows their rights and understands where to look for reliable information, that is a success. When a person continues treatment without interruptions and does not fall out of the process, that is a success. When a person can navigate a new healthcare system, that is also a success.
And if a person can help not only themselves, but also others, that is probably a double success. When a person feels calm, that is also a result. Sometimes these changes are the most important ones.
The theme of AIDS 2026 is Rethink. Rebuild. Rise. If we apply it to supporting Ukrainians, migration and HIV prevention, what needs to be rethought, rebuilt and strengthened?
For me, this theme strongly resonates with what is happening today.
Rethink means stopping the perception of prevention as only a medical service. It means rethinking the role of communities and people who are directly affected by HIV.
Rebuild means building a system where medicine, communities, digital technologies, social services and state institutions truly work together. I think this is often what is missing.
Rise means creating conditions in which a person does not just receive support, but feels confidence, stability and the ability to make decisions about their own future. Both the person and the community.
What is the main message from your experience that you would like to bring to the international audience at AIDS 2026?
For me, the main conclusion is very simple: no programme can replace human trust.
Over the past few years, I have once again seen how important communities, local organizations, peer counsellors and people who are ready simply to listen, help and take the first step together really are.
For me, the future of prevention is not about choosing between the state, medicine or communities. The future of prevention is in partnership and cooperation. Everyone does what they do best, while the person always remains at the centre.
And finally, please complete the sentence: HIV prevention for people in migration will not work if…
HIV prevention for people in migration will not work if a person is left alone.
If they are afraid to ask questions, if they do not understand where to go next, if there is no connection between medicine, social services and community organizations, then prevention will not work.
And most importantly: prevention will not work if we see people only as statistics, numbers and indicators. Behind every number there is always someone’s life, someone’s personal story and someone’s hope. That is why people must always remain at the centre.