During AIDS 2026 and as part of the Rethink. Rebuild. Rise. campaign, VirusOFF continues its series of articles 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 Latsin Alijev, Director of MTÜ EHPV — the Estonian Network of People Living with HIV — and founder of BaltHUB, which brings together organisations from Estonia, Latvia and Lithuania, about why a sustainable HIV response is impossible without trust, communities, peer counselling and the meaningful participation of people living with HIV.
This conversation is about why medical progress alone does not yet mean safety for a person; why “sustainability” must not become another word for cutting support; and why, in times of war, migration and shrinking resources, community-led services often become the bridge between the system and those it risks not hearing.
Latsin, this interview is being published during AIDS 2026 — at a moment when the global conversation on HIV is again focused on sustainability, financing, rights and the role of communities. What is the main experience from Estonia and the Baltic region that you would like to bring into this conversation?
When we speak about the experience of Estonia and the Baltic countries, I think it is important to show not only the achievements, but also the questions that still remain open.
Over the past twenty years, we have really come a long way. There was a time when HIV was perceived mainly through fear, uncertainty and social isolation. For many people, a diagnosis meant not only a medical challenge, but also the risk of losing the trust of their family, their job, their relationships and their sense of dignity.
Today, the situation has changed. Modern antiretroviral therapy allows a person to live a long, active and full life. We know that a person who is on treatment and has an undetectable viral load does not transmit HIV through sex. This is one of the most important achievements of modern medicine and a huge step forward for the rights of people living with HIV.
But these successes can sometimes create a new danger. When medical indicators improve, there is a feeling that the problem has almost been solved. In reality, this is not the case.
A person may be receiving treatment, but still be afraid to disclose their status. They may have access to pills, but remain alone with fear, depression, isolation or internalised stigma. They may be formally included in the system, but not feel that the system truly understands their life situation.
Today, we all live in a world where crisis is no longer an exception. It has become the background of our everyday lives. War, migration, economic instability, political uncertainty and shrinking resources all directly affect people’s health, even when, at first glance, they may seem to belong to different areas.
For a person living with HIV, any crisis can very quickly become a personal threat. Losing a home, documents, a doctor, language or a familiar support system is not an abstract problem. These are questions of continuing treatment, accessing medicines, trusting a new system and having a basic sense of safety.
This is why today we need to expand our understanding of sustainability. Sustainability is not only the ability of a system to keep working on paper. It is not only programme financing, the number of tests, the number of people on treatment or reporting indicators. Sustainability is the ability not to leave a person behind at the moment when their life has changed. It is the ability to see them not as a number in a report, but as a person who may be confused, frightened, lonely and in need not only of a prescription, but also of support.
Recent years have shown this especially clearly. The pandemic changed the work of healthcare systems. The war in Ukraine led to the largest movement of people in Europe in decades. People lost their homes, documents, usual doctors, social connections, language and understanding of where to turn.
For a person living with HIV, such changes can be critical. Losing contact with the system is not just an administrative problem. It is a risk of treatment interruption, worsening health and the return of fear.
The main lesson from our region is that the medical system works better when there is a strong community nearby. Organisations of people living with HIV often see those whom the formal system does not notice. They can find a person who has lost contact with healthcare. They can explain how the system works. They can become the first safe place after a diagnosis.
That is why I believe the main contribution of Estonia and the Baltic region to the international conversation is this: the HIV response must be built not only around the virus. It must be built around the person. Treatment controls the virus, but trust, safety and the readiness to seek help are created through people.
EHPV has worked for many years as an organisation of people living with HIV. What changes in the HIV response when it is built not “for people”, but together with the people it directly concerns?
The whole philosophy of work changes.
For a long time, in many countries, there was a model in which specialists, state structures and medical institutions decided what people needed, while the people directly affected remained in the role of recipients of assistance. Of course, the expertise of doctors, researchers and state institutions is extremely important. But over time, it became clear that it is impossible to create a truly effective system without listening to those for whom it exists.
People often lose contact with the system not because treatment is completely unavailable. The reasons can be much deeper: fear of disclosing their status, previous experiences of discrimination, mistrust of institutions, language barriers, dependence, migration status, lack of documents, mental health or the feeling that no one is interested in their life situation.
Sometimes a person needs not only a medical specialist. They need someone who understands their path.
This is why the role of peer counsellors and organisations of people living with HIV is so important. A person who has gone through a similar experience can offer something that is not in a medical protocol: a sense of understanding, acceptance and hope. When someone hears: “I know how hard this is for you. I have been through this too. You can continue living,” it can become a turning point.
A community-led approach should not be treated as an additional service or a temporary initiative. It is part of a modern public health system. Moreover, we often underestimate the economic and social value of communities.
Support for civil society organisations may seem like a separate budget line. But if these organisations disappear, the system will have to rebuild the mechanisms of trust that took years to create. And trust cannot be created by an order, a strategy or an administrative decision. It is built through relationships between people.
This is why the community should not be an external element of the system. It should be part of it — from planning to implementation, from assessing needs to making decisions.
If we look at HIV prevention not as a list of services, but as a person’s path, where does that path most often become difficult?
The biggest mistake is to think that prevention begins in a doctor’s office or at the moment of testing. In reality, a person’s path begins much earlier: with information, trust, internal fear, language, social conditions and the question: “Can I even seek help?”
For some people, the main barrier is the lack of clear information. For others, it is fear of judgement. For others, it is documents, migration status, language or a previous experience with the system after which they no longer want to return.
It is especially important to understand that people do not always come to the system in the “right” way. A person may come late. They may first deny risk. They may be afraid of testing. They may not know what PrEP is. They may think they will be judged. They may live in a situation of violence, dependence, unstable housing or social isolation.
If the system waits only for the “ideal patient”, it loses real people.
Prevention therefore has to be not only medical, but also human. It should include clear information, a safe first contact, the possibility of anonymous or confidential access, peer counselling, accompaniment and respect for a person’s life situation.
Often the most difficult moment is not the test itself or the pill itself. The most difficult moment is taking the first step and believing that you will be helped, not judged.
Healthcare systems in the Baltic countries are relatively small, but people in migration can still easily get lost between institutions, rules and services. What helps such systems become more flexible and person-centred?
Small systems have their limitations, but they also have an important advantage: they can adapt faster if there is political will, cooperation and trust between the state, medical institutions and communities.
A person in migration often finds it difficult to understand how a new system works. Where should they register? Who has the right to treatment? Where can they get medicines? What should they do if they do not have documents? Is it safe to speak about HIV status? Who will help translate, explain and accompany them?
For an institution, this may be a set of administrative procedures. For a person, it is stress, fear and sometimes a risk of treatment interruption.
Flexibility begins with simple things: clear information in different languages, referral pathways, cooperation between NGOs and medical institutions, the possibility of rapid accompaniment, respectful attitudes and the absence of unnecessary barriers.
Community-based organisations play a very important role. They can explain the system to a person in simple language, help them make an appointment with a doctor, connect them to the right service and support them emotionally. This is especially important for people who do not know the language, do not trust state institutions or are afraid of disclosing their status.
A system becomes person-centred when it sees not only documents, but also a person’s life situation.
BaltHUB brings together organisations from Estonia, Latvia and Lithuania. What is the value of a regional approach right now, when people are moving, changing countries, documents, doctors and familiar routes of care?
Today, people move much more often than before. They change cities, countries, documents, doctors, language environments and familiar routes of support. But their needs for treatment, prevention, support and safety do not disappear.
This is exactly why a regional approach becomes especially important.
BaltHUB grew out of the understanding that the challenges faced by Estonia, Latvia and Lithuania are similar in many ways. We are small countries, our healthcare systems have their own specific features, but people face similar barriers: stigma, fear, lack of information, difficulties with access, migration-related issues and limited resources for community-led services.
Regional cooperation allows us not to start from zero every time. We can exchange practices, support each other, speak more strongly at the international level, jointly protect the role of communities and respond to crises faster.
A regional approach is also important for people who move between countries. If a person living with HIV moves from one Baltic country to another, they should not lose access to information, treatment and support simply because they have crossed a border.
A person’s health does not stop at a state border. This means our solidarity should not stop there either.
How do you see the role of EHPV today: is it a service organisation, an advocacy platform, a space of trust, a voice of people living with HIV, or all of this at once?
I think EHPV is all of this at once, and that is our strength.
We provide services because people need real help here and now: counselling, accompaniment, information, support and navigation through the system.
We do advocacy because systemic problems cannot be solved without policy change. If we see every day that people are facing barriers, we cannot remain silent. We have to talk about this with the state, partners and international organisations.
We create a space of trust because, for a person living with HIV, it can sometimes be very important simply to have a place where they can speak openly and not be afraid of judgement.
And we are the voice of people living with HIV because our experience must be represented where decisions are made.
EHPV is not only an organisation. It is the story of people who decided to change the situation. People who themselves faced fear, stigma and diagnosis, but turned their experience into support for others.
For me, it is very important that we do not see people living with HIV only as recipients of assistance. We see them as holders of knowledge. They know where the system works and where it does not. They know why a person does not come on time. They know what helps a person stay connected to treatment. This knowledge must be part of policy.
What in the experience of people living with HIV in Estonia and the Baltic countries often remains invisible in international discussions — especially when the conversation is about “successful” or “stable” systems?
International discussions often look at countries through indicators: treatment coverage, availability of therapy, quality of the medical system, level of digitalisation and economic indicators. According to these parameters, the Baltic countries may look quite stable.
But behind the stability of a system, there may still be invisible people.
These are people who are afraid to disclose their status. People who live in social isolation. People with migration experience. People without stable income or documents. People who use drugs. Gay men, bisexual men and other men who have sex with men. People facing mental distress, loneliness or internalised stigma.
Sometimes a system is formally accessible, but psychologically or socially inaccessible. This is an important distinction.
A person may have the possibility to see a doctor, but be afraid to do so. They may have the right to a service, but not understand how to exercise it. They may live in a country with good healthcare and still feel lonely and unsafe.
This is what often remains outside international conversations. A successful system is not only one that has medicines. It is a system where a person is not afraid to seek help.
In recent years, there has been much discussion about transition to domestic financing and sustainability. What must be protected first so that sustainability does not mean the loss of community-led services, peer counselling and access for people whom the system often sees last?
This is one of the most important questions today.
Of course, every country should develop its own sustainable systems and take responsibility for people’s health. But we need to speak honestly about what exactly we mean by sustainability.
Sometimes the word “sustainability” is used only in a financial sense. When people say, “We need to make the system more sustainable,” in practice this may mean, “We need to cut costs.” This is a dangerous approach.
True sustainability should mean the ability to preserve what actually works.
And we know what works. Trust works. Early identification works. Peer counselling works. Accompaniment throughout a person’s journey works. Outreach teams work. Community-led organisations work — the organisations that support people in difficult situations every day.
When resources are reduced, the elements most often put at risk are precisely those that do not always look like medical services: peer counsellors, social support, navigation, translation, accompaniment, psychological support and work with people whose needs the system often sees last.
But without these elements, a person may simply never reach a medical service.
Today, it is very important not to speak about sustainability in cold administrative language. Behind every budget cut, every closed service and every lost peer counsellor, there is not just a line in a financial plan. There is a person who may never come back for help. A person who will be left alone again. A person who will lose trust in the system.
In times of crisis, community-led services are not an additional part of the response, but its human heart. They help the system remain alive, flexible and able to hear those who are most often left at the end of the queue for attention.
If we lose communities during a period of instability, we will lose not only services. We will lose the bridge between the system and people. And without this bridge, even the most modern medicine will not reach everyone.
This is why community-led services must not be treated as additional. They are not “soft” components or secondary activities. They are the infrastructure of trust. And if we lose trust, it will be much more difficult and more expensive to rebuild it.
For many years, the HIV response has largely been built through projects: a project starts, a project ends, and then new funding has to be found again. How does this “project logic” affect people and the sustainability of community-led services?
This is a very painful and important question. For many years, we have lived according to the logic of projects: a project starts, a project ends, and then the search begins for a new project, a new call, new funding. But a person’s life does not work according to a project cycle. A diagnosis does not end on the day a grant ends. The need for support does not disappear when a financial report is closed. Fear, stigma, migration-related difficulties, the need for accompaniment, peer counselling and trust do not have an end date.
This is one of the main problems in today’s HIV response. Very often, services that are vital for a person exist as temporary activities. While there is a project, there is a counsellor, accompaniment, outreach and a connection to the community. The project ends — and the person again has to search for where to go, who can help, where to get information and who can explain how not to lose treatment and contact with the system.
For a person, this can feel very harsh. Yesterday they had access to support, and today they are told: the project has ended. But their life has not ended. Their needs have not ended. Their fears and problems have not disappeared.
It is especially dangerous when this project logic becomes the basis of state policy. The state may think that the main task is to provide the medical part: medicines, doctors and formal access to treatment. Of course, this is necessary. Medicines are the foundation of the HIV response. But if we speak only about medicines and do not see the whole path of a person, we are building an incomplete system.
A medicine by itself does not answer the question of why a person did not come for testing. Why they are afraid to disclose their status. Why they do not trust a doctor. Why they interrupted treatment. Why a person in migration does not know where to turn. Why a person after diagnosis is left alone with panic and shame.
These questions are not solved only by a pill. They are solved through trust, accompaniment, peer counselling, community work, outreach, social support and the participation of people living with HIV in decision-making.
This is why community-led services should not exist only as projects. They should be recognised as a permanent part of the system. Not a temporary add-on, not an experiment, not a “soft component” that can be removed when the budget is cut, but a necessary infrastructure of public health.
When the state says, “We provide the most important thing — medicines,” it is important to answer: yes, medicines save lives. But a person still has to reach those medicines. They have to trust the system. They have to remain in treatment. They have to understand their rights. They have to not be afraid to seek help. And this is where the role of the community becomes irreplaceable.
True sustainability begins when services for people do not depend on whether a project has ended. When peer counselling, accompaniment and community-led support become part of a long-term programme designed not for one reporting period, but for years ahead.
As long as we continue to build the HIV response only through short-term projects, we recreate again and again the risk of a break between the system and the person. In times of crisis, migration and shrinking resources, this break becomes especially dangerous.
A person’s life cannot depend on the end date of a project. If we are truly talking about sustainability, we must move from the logic of temporary projects to the logic of long-term responsibility.
If funding is reduced, which elements of the HIV response must not be considered “additional” — even if they do not always look like medical services?
Everything that helps a person enter the system and stay in it must not be considered additional.
This includes peer counselling. Community-based testing. Outreach. Accompaniment after diagnosis. Support for people in migration. Work with language and social barriers. Support for people who are afraid of disclosing their status. The connection between medicine and a person’s real life.
Sometimes such services are difficult to show in classic medical statistics. But they determine whether a person seeks help, starts treatment, continues it and can cope with fear.
Funding may decrease, but people’s needs do not decrease. If we remove support, people do not disappear. They simply become less visible to the system.
And that is the greatest risk.
In your view, what is the strength of activism by people living with HIV today? Is it still a struggle for access to treatment — or is it already a broader conversation about dignity, safety, participation in decision-making and the right to influence the system?
It is still a struggle for access to treatment, because access can never be taken as guaranteed forever. But today, activism has become broader.
It is a struggle for dignity. For safety. For the right to be heard. For participation in decision-making. For policies and programmes to be created not only by experts, but also by the people they directly affect.
People living with HIV should no longer be objects of policy. They should be participants in it.
The strength of activism today is that it connects personal experience with systemic change. When a person speaks about their life, they are not speaking only about themselves. They show where the system works and where it leaves people without support.
Activism is not only protest. It is also care, solidarity, peer counselling, participation in working groups, the creation of services and helping those who are afraid to take the first step.
For me, activism by people living with HIV is the ability to turn personal pain into public strength.
AIDS 2026 takes place under the theme Rethink. Rebuild. Rise. If we apply it to the experience of EHPV and BaltHUB, what do we need to rethink, what do we need to rebuild and what should become stronger in the HIV response in Central and Eastern Europe and Central Asia?
I think we are truly going through a period of deep transformation. This applies not only to the HIV response, but to the entire public health system.
The world has changed. The challenges have changed. People’s situations have changed. Old models are gradually stopping working, while new ones are only beginning to take shape. Right now, the place that communities will have in the future is being decided.
Will they be seen as temporary partners brought in only for individual projects? Or will we recognise that it is impossible to build an effective system without their participation?
We need to rethink the very concept of partnership. Communities should not be invited only when feedback is needed or when an already prepared project has to be implemented. They should be at the decision-making table from the very beginning. Because they bring knowledge that cannot be obtained in any other way.
We need to rebuild our attitude to sustainability. A sustainable system is not only a system that is financed domestically. It is a system that knows how to hear people, adapt to crises and not leave outside its attention those whose needs are most often invisible.
We need to strengthen international and regional cooperation. War, migration, economic instability and shrinking resources show how connected we are. No country today can solve all challenges separately.
And we need to strengthen the role of community-led organisations. Not as temporary partners, but as a necessary part of the HIV response.
To put it simply: we need to rethink power, rebuild trust and strengthen solidarity.
If you were to complete the sentence, “The HIV response in our region will be sustainable only when…”, how would you finish it?
…when the person is always at the centre.
When we remember that behind every diagnosis there is not a statistic, but a human story. The story of a person with their fears, hopes, family, plans and dreams.
The HIV response will be sustainable when no one is afraid to seek help. When a person does not hide their status because of fear of discrimination. When access to support does not depend on language, origin, documents, migration status or life circumstances.
It will be sustainable when communities are seen not as temporary projects, but as full partners. When peer counsellors, outreach workers and community-led organisations are protected no less than medical services. When international solidarity remains a real action, not just a beautiful word.
I hope that one day organisations of people living with HIV will truly no longer be needed. But this will not happen when the virus disappears. It will happen when fear, stigma and inequality disappear.
We have achieved enormous progress in HIV treatment. This is a huge achievement. But our time demands more from us. In a world where crises are becoming constant, where people lose homes, borders, documents, safety and confidence in tomorrow, we must learn to listen to the person better.
Because the HIV response of the future will be measured not only by how many people received treatment. It will be measured by how many people were not left alone.
We have learned to treat the virus. Now we need to learn to listen to the person better.
Because the future of the HIV response is built not only on medicines, technologies and strategies. It is built on trust. On solidarity. And on a simple human understanding: no one should be left alone.
