“You open your mouth, you scream, but no one hears you”

On a cold morning in Berlin's Leopoldplatz, a woman in a bright blue coat stands out against the grey winter sky. Leaning on her walker, she warms her hands around a cup of tea as she waits for her counsellor from PlusUkrDe e.V.

Inessa fled Odesa to escape missile attacks, hoping Germany would offer her safety and access to medical care. She found housing and social support. But she also found other challenges: loneliness, language barriers, and a complex healthcare system.

Since the full-scale invasion of Ukraine began, Germany has taken in more Ukrainian refugees than any other EU country. Today, more than 1.3 million Ukrainians currently hold temporary protection status here. Many arrive with nothing. Some arrive living with HIV, without medication and no idea where to turn.

For people living with HIV, uninterrupted treatment is vital. Yet without language skills, navigating the German heathcare system can feel impossible. Finding a doctor, accessing antiretroviral therapy (ART), or receiving psychological support becomes a major challenge. Each step becomes a barrier.

“For three years, I couldn’t find a doctor. They told me, ‘We don’t understand you,’ and wouldn’t even look at my wounds,” Inessa recalls.

With support from the Elton John AIDS Foundation, PlusUkrDe e.V., and Deutsche Aidshilfe are working to ensure no Ukrainian refugee faces these challenges alone. For many, the barriers go beyond language. Stigma, fear and misinformation keep people from seeking care. Some wrongly believe that disclosing their HIV status could jeopardise their protection or lead to deportation. These community-led projects provide free peer counseling, psychological support, and direct access to the HIV prevention and treatment services that can save lives.

For Inessa and hundreds of others, that support changed everything. “When I felt I was no longer alone, it was like wings grew behind my back,” she says. Her peer counselor, Mykhail, has helped her access medical care, including transfer to an appropriate opioid substitution therapy site, as well as providing mental health support.

Kateryna Parfeniuk, co-founder of PlusUkrDe e.V, says the true number of people living with HIV among Ukrainian refugees is hard to determine. “But according to various expert estimates, there may be as many as 10,000 refugees living with HIV in Germany. That is why part of our work includes prevention activities in dormitories and refugee camps,” she explains, noting that she herself once went through the process of accepting her HIV status.

In just seven months, the project has already reached more than a thousand people. Yet for Kateryna, success is measured not by numbers but by real stories of lives saved.

Kateryna adds that the team quickly found a doctor and ensured his treatment continued.

Kristina Rivera, a migrant health expert, meets refugees from their first days in Germany, often in the vast temporary settlement on the grounds of Berlin’s former Tempelhof airport.

“In theory, people stay for a month before being distributed across different states,” she says. “In reality, because of bureaucracy and housing shortages, they can stay a year or longer. Their lives are put on hold.”

Inside the camps, the human cost is visible.

Borys Hrachov, a Ukrainian veteran, queer activist and refugee himself, leads the project at Deutsche Aidshilfe.

“Imagine being in a foreign country and not knowing where to go for treatment,” he says. “We are the ones who take your hand and help you navigate the system.”

Germany may appear prosperous, with strong national HIV indicators. But Borys warns that those figures hide a more fragile reality.

“For Ukrainians living with HIV here, access is not guaranteed. Testing and treatment pathways are not always straightforward.”

Support from RADIAN, the partnership between Gilead Sciences and the Elton John AIDS Foundation, has made this work possible, funding community-led HIV care models across Eastern Europe and Central Asia.

For 59-year-old Liudmyla, psychological support and community solidarity became the starting point of recovery after one of the hardest periods of her life.

A refugee from eastern Ukraine, she has lived with HIV for many years and previously worked as a social worker supporting others. After moving to Germany, she was diagnosed with stage three stomach cancer.

When fear prevented her from making even short-term plans, she sought help and found psychological sessions offered through Deutsche Aidshilfe.

“The most important thing was that it was free and accessible. I left a request on the website, and they called me within an hour. After several sessions, I was able to work through my concerns,” she says, now planning to return to studying German and volunteering.

“For the first time in a long time, I feel my will to live returning.”

As the war in Ukraine continues, so does the flow of people seeking safety.

“We all wish the war would end tomorrow but as long as help is needed, we will be here,” says Kristina.

For refugees living with HIV, rebuilding a life in a new country is about more than housing and paperwork. It is about dignity. It is about continuity of care. It is about being heard.

When someone opens their mouth and asks for help, someone must answer.

With the support of the Elton John AIDS Foundation and our partners, they are not alone.