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We reduce the self-stigma of women living with HIV in EECA

The social media campaign #SeeWhatMatters, created by the AFEW partnership, aims to reduce the self-stigma of women living with HIV and affected by HIV and to change societal attitudes towards them through reducing social stigma in Eastern Europe and Central Asia. It was launched on March 1, 2023 and helped people to see a woman with HIV not as her diagnosis, but first of all as an ordinary person, with her fears and dreams, emotions, experiences and successes. We asked the project coordinators in the participating countries why the campaign is so important to the region and what was the most memorable thing about working on it.

Alexandra Lee, #SeeWhatMatters Campaign Coordinator in Kazakhstan, AFEW Kazakhstan Project Manager

Stigma and discrimination against women living with HIV continue to exist and affect different areas of human life, thereby creating barriers and obstacles to HIV prevention and treatment. This seriously reduces the overall quality of life of people affected by HIV.

As one of the project participants noted, we developed the info campaign on a very important socially relevant topic. We tried to show the world through the eyes of a woman living with HIV, that she also has feelings, fears, that she wants to be understood and accepted. Perhaps, people who watched our videos will say those important words: ‘I am here’, and if someone’s situation changes just a little bit – that’s already a victory.

What makes the “See what Matters” campaign unique is that the women affected by HIV were involved at all stages, from the development of the slogans and text for the videos, to the voice-over phrases and pictures of their eyes. Their participation allowed the real emotions and fears experienced by women living with HIV in Kazakhstan to be conveyed as much as possible. We hope that people who see the campaign materials will feel the women’s feelings and the degree of negative attitudes in the society will become lower.

Natalya Shumskaya, Coordinator of the #SeeWhatMatters campaign in Kyrgyzstan, Director of AFEW in Kyrgyzstan

The project Combating stigma to end HIV/AIDS in Eastern Europe and Central Asia (EECA) aimed at empowering women living with HIV and women from key populations and it became one of our organisation’s significant projects in 2022-2023.

This project gave us an opportunity to mobilise the community of women living with HIV (WLHIV) in Kyrgyzstan from all regions, districts, cities and villages. We met more than 60 WLHIV and felt their difficult fates and admired their courage and resilience. For us, they are the heroes of our time.

A rapid needs assessment of Women living with HIV showed that they have high level of self-stigma and low level of self-esteem. The main request was for psychological help. We invited psychologists with peer counsellors from activists of women living with HIV and families with HIV-positive children and conducted a series of webinars and offline training in Kyrgyz and Russian. According to the participants’ feedback, the trainings helped them to discover their personal strengths, better understand themselves, learn new behavioural strategies and new ways of responding emotionally to self-stigma and self-discrimination.

In addition, the project was implemented with the participation and leadership of the women living with HIV community from the beginning. Together with them, we developed an educational module, conducted research and developed videos and recorded audio messages of the information campaign by our women themselves. We are very proud to have contributed to the development of leadership, activism of women and families affected by HIV in our country!

Yulia Komo (Koval-Molodtsova), Coordinator of the #SeeWhatMatters campaign, AFEW International

The need to reduce stigma and discrimination against women, especially in our region, is very high. The main message of the campaign is to see a woman with HIV not as her diagnosis, but first of all as an ordinary person, with her fears and dreams. We wanted to show her emotions, experiences and successes. The diagnosis is not the main thing, the main thing is who you are and how you build the world around you.

We hope this campaign will contribute, so that people with HIV, and in particular women with HIV, will stop being discriminated against, feared, dismissed and demanded to take their children out of kindergarten or school.

We also hope that our campaign will help reduce self-stigma among women with HIV. Even though the project is now over, our campaign is still actively being disseminated in the countries of the region. We are getting feedback from people and we know that the videos have already resonated with many HIV-positive women and professionals who work with HIV issues.

Vera Varyga, board member of Positive Women, coordinator of the #SeeWhatMatters campaign in Ukraine

“After I found out my positive status, I faced a lot of stigma. I wish with all my heart that other women don’t have to go through the same traumatic experience. That’s why I believe that the #SeeWhatMatters campaign is extraordinarily important for women not only in Eastern Europe and Central Asia region but also in the whole world.

The need for such a media campaign in the community of women living with HIV in Ukraine has been there for a long time, and we are very happy finally to have it. Especially now, in the context of war, when women with children are forced to move in search of safer places, to have new contacts in health services, in society and in everyday life.

The possibility to take part in absolutely every stage of the development of the campaign was very valuable for the project team and the community of women living with HIV in Ukraine. It has become a part of us, you can hear the real voices and see the eyes of our Ukrainian women. We are grateful to the professionals who listened to us as experts in living with HIV. Our suggestions have been always taken into account, and we managed to make a product that visualizes the relationship between external and internal stigma, and at the same time breaks down existing public myths and stereotypes related to the lives of women in our community”.

Arina Aladysheva, scriptwriter of the #SeeWhatMatters campaign

When we started working on the campaign, I was already quite immersed in the topic of HIV, but the individual cases of HIV+ stigma that I learned about during interviews and from AFEW research shocked me and made me think about how complex and multi-faceted this issue is.

It was very important for me to remain open and willing to listen and hear the voices of the women with HIV in this project because we are all human beings with our own stories, experiences and unique experiences.

Our team tried to make the characters come together and show different ages, ethnicities, positions in society and values, so that as many HIV+ women as possible could recognise themselves in the spots. I am very grateful to AFEW for the opportunity to share these stories and increase the positive representation of HIV+ women in the media. And, of course, for the chance to see the reactions of women who were finally able to see their experiences reflected in our videos – which was probably the most joyful and moving moment in our work.

Maria Koneva, director of videos for the #SeeWhatMatters campaign

Participating in the development of videos for the #SeeWhatMatters media campaign was a truly unique experience for me and my team. The fact is that the production had a collective “customer” in the form of several groups of women with HIV, and our task was to tell the world about their personal and intimate. We wanted to take into account all the wishes and make sure that the campaign participants were happy to see the results.

Our heroines are of different ages and they are real. Once, we even had a little argument with the women about whether to add or remove wrinkles from the heroine. The uniqueness of our videos is that the voiceover was done by real women living with HIV. Initially, we wanted to prepare a professional voiceover for the video, which would have been easier and quicker. However, the women themselves were very enthusiastic about the idea, became active and recorded the texts on their phones. And I am glad that it worked out that way. For example, the phrase ‘I have HIV’ is pronounced very differently by a woman with HIV than by an actress. Our heroine says this phrase very simply, looking the viewer in the eye. This is the reality in which she lives, and its acceptance should be the norm in society.

For reference

In March 2023, AFEW Partnership, and with financial support Gilead, launched a social impact campaign «See what matters»! as a part of the project “Combating stigma to end HIV/AIDS in Eastern Europe and Central Asia (EECA)”.  This campaign contributed to one of our strategic direction – GREATER VISIBILITY for underserved populations’ needs in the EECA region and their needs related to health and rights.

The campaign materials are freely available at www.stopstigma.hiv. in English and Russian, as well as Kazakh, Kyrgyz, Uzbek, and Ukrainian languages and include videos and visuals that can be used for online and offline promotion.

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