Svetlana Kulsis is the head of AHF partner Demetra – the Association of Women and Their Families Vulnerable to HIV. Her and Demetra’s story is next in our “I Am AHF” series featuring remarkable staff, clients, and partners who are doing what’s right to save lives everyday.
Interviewed by Diana Shpak, Knowledge Management Focal Point, AHF Europe Bureau.
This year marks the 25th anniversary of Lithuania’s Demetra, a remarkable milestone that reflects the organization’s long-standing commitment to supporting women and families vulnerable to HIV, and its dedication to advancing social change. Within this journey, the past 15 years of cooperation with AHF stand out as a partnership that has become a lifeline for many people and a true example of shared commitment to a common cause.
On this important occasion, the head of Demetra in Vilnius kindly agreed to give us an interview and share her experiences, values, and the story of the organization.
Svetlana, could you tell us about your path before working with AHF? What inspired you to enter the field of HIV/AIDS and public health?
We came to the NGO sector from the State AIDS Center with prior experience in HIV prevention. In the late 1990s, we saw the urgent need for faster services for vulnerable groups that state institutions couldn’t reach, which led us to create our own organization.
Our first focus was women engaged in street-based sex work in Vilnius. Testing 18 women at the railway station clinic was eye-opening. None had HIV, but nearly all had other untreated STIs. This revealed a high-risk group left outside the healthcare system.
In 2000, Demetra was founded by gynecologist Rūta Jarašūnienė, Dr. Giedrius Likatavičius, and me. By 2002, we had our own space where women could access consultations, condoms, and medical care.
How did your cooperation with AHF begin?
We first met AHF in 2009 at a conference. In 2011, Terri Ford, AHF’s Chief of Global Advocacy & Policy, and Denys Nazarov, Director of Global Policy and Communications, visited Vilnius to see our work and meet other NGOs. That visit led to Lithuania’s first programs for rapid, anonymous testing, condom distribution, and linkage-to-care services. At the time, treatment was prescribed only at late stages, and together with AHF, we began advocating to change this.
In 2012, we signed our first contract and received resources from AHF for regular activities, including test kits, condoms, and funding for events. From that moment, our collaboration grew into a full-fledged partnership that led to major improvements in treatment access and support for people living with HIV in Lithuania.
Svetlana, this year marks 15 years of cooperation with AHF. What does this anniversary mean to you? What have you achieved together?
Fifteen years is a serious milestone. Together with AHF, we achieved a lot.
In 2012, after the Keep the Promise campaign, Lithuania adopted a law to begin HIV treatment at a CD4 level of 350, which was our first victory. By 2018, ART was expanded to everyone, regardless of CD4 count, thanks to advocacy by AHF and local partners Dovile Sakaliene and Juozas Olekas.
Other milestones include restoring the National Coordination Council, creating green corridors for immediate treatment, removing the referral requirement for STI care, and securing ART access in prisons. With AHF’s support, Demetra also built lasting dialogue with the Ministry of Health and defended NGOs performing testing.
Thanks to AHF’s support and personal involvement, we preserved access for vulnerable groups. Yes, we are leaders and experts, but most importantly, we changed the lives of people who once had no help.
In your opinion, what makes AHF different from other organizations?
AHF focuses on high-quality services for people affected by HIV, reaching those excluded from the state system and defending their right to equal treatment. That is its strength.
Together with AHF, Demetra reduced barriers to care and expanded testing. They brought large-scale campaigns never seen before. Inspired, we launched the Safety Caravan, a mobile testing unit that travels across Lithuania each summer. At first, people resisted testing, but by 2014 in Klaipėda, queues formed, and even healthcare workers came, trusting anonymous testing.
AHF gave us more than test kits. They made a humanitarian contribution to changing state policy and public attitudes. We showed society that health concerns everyone and must never be a source of shame.
All these achievements with AHF are the result of years of work, but also a constant source of motivation. What motivates you the most?
There was one man who was HIV-positive, a former drug user with a criminal past, frail and on crutches when he first came to Demetra. We helped him restore documents, get insurance, start treatment and even volunteer. Treatment worked. Today he is healthy, married, a father, and living a full life. That gives such a deep sense of meaning.
Sometimes I think back to how it all started, just a small team walking the streets, handing out condoms, talking about HIV. Today, our former staff lead medical institutions, which brings enormous joy. You realize everything we do is priceless. It’s about life, the future, and what will remain after us. I just want the people we work with to have a good life.
Svetlana’s words remind us that true strength lies in simple, persistent actions and in the humanity that brings hope where it’s needed most.
