"I FELT I HAD NO CHOICE BUT TO TAKE PART SOMEHOW"

VERA

YEKATERINBURG, RUSSIA

After her own HIV diagnosis, and losing loved ones to the virus, Vera founded a grassroots HIV support organisation in Yekaterinburg Russia which has since gone from strength to strength.

Between delivering services directly to people living with and at risk of HIV, and delivering training and professional development to those in other public services, Vera relishes the challenges of her role.

Vera says: "I feel obligated to do what I do because every life saved matters, and because I believe there is a supreme value in leaving something behind."

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Vera’s story

Yekaterinburg, Russia

"When I saw how many people had died, including people close to me, I felt I had no choice but to take part somehow. I realised I was already deeply affected by the disaster that HIV was at that time, so I knew I had to take this path and do something about it." Vera's recollection reflects a reality that is all too common in Eastern Europe and Central Asia (EECA).

For Vera, this realisation marked a turning point. Spurred on by her own experiences since her HIV diagnosis, she has worked tirelessly to help others like her, leading her to start an organisation that supports people living with and at risk of HIV: "All my activities probably stem, in one way or another, from the fact that I am living with HIV. Now I am surrounded by people who are active in this sphere."

Beginning on a small, grassroots scale, Vera saw the need to create services for other people like herself. Vera started running peer support groups and patient information meetings, designed to inform and help other people living with HIV. As this work progressed, and needs of the community of people living with HIV increased, Vera took the daunting but important step of formally registering the organisation: "To achieve greater success, you need to name and present your organisation a certain way, and clearly articulate your mission and everything you want to achieve. So, we said, "we have a mission – we want to end the HIV epidemic in the Sverdlovsk region."

To achieve greater success, you need to name and present your organisation a certain way, and clearly articulate your mission and everything you want to achieve. So, we said, "we have a mission – we want to end the HIV epidemic in the Sverdlovsk region."

I feel obligated to do what I do because every life saved matters, and because I believe there is a supreme value in leaving something behind

The organisation's work centres around delivering services directly to people living with and at risk of HIV, including individual and group counselling, outreach events and HIV prevention exhibitions. However, Vera tries to remain flexible so she can prioritise urgent responses when they are needed: "There may always be people who require some kind of immediate attention or intervention."

Vera and her colleagues continue to engage with stakeholders across the HIV community, and are committed to building partnerships to create a more effective HIV response. The organisation provides training and professional development, bringing together disparate service providers from the healthcare system. "They are all glad to take part," she explains "and at meetings like this we grow professionally together, exchange experiences and make plans for future collaboration."

The changes and challenges of her role help Vera feel a true sense of purpose: "As we say, choose a job you enjoy and then you won't work a day in your life. At this point, this has become a lifetime project and it's not about work for me. I feel obligated to do what I do because every life saved matters, and because I believe there is a supreme value in leaving something behind."

THE IMPACT OF RADIAN ON VERA'S WORK

The partnership between RADIAN and Vera's organisation is an ambitious project which, it is hoped, will bring the region closer to the global UNAIDS goal of ending the AIDS epidemic by 2030.

To end the AIDS epidemic, all people living with HIV must have access to the care they need. Vera is currently working together with her local AIDS Centre to implement an innovative model of mobile search teams to bring thousands of people living with HIV who are lost to follow up (meaning people who know their status but are not on treatment) back into care.

These are often people who have known their status for many years but for various reasons have not been able to access the care and life-saving treatment they need.

Despite living in a region with a high prevalence of HIV, Vera is optimistic that her organisation, with support from RADIAN, can effect change: "I see changes in the medical community, the general population. I remember how things were twenty years ago, or even just ten years ago. If you compare, you understand that everything can be changed. If you set goals and use your motivation and expertise, you can always achieve them."

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Illuminating the stories
of local heroes working
to end AIDS in EECA