Positive power

27 October 202310 February 2025hivstigmafighter

My lovely people,

Have you ever had a dilemma where you had to choose between what is best for you as a person or for us a HIV community? Last week I had to make such a choice. While getting ready for the 19^th European AIDS Clinicians Society (EACS) between 18-21 october in Warsaw, Poland, on the 13^th of October my sister died in Gihanga, Burundi.

So, I was torn between dealing with grief and organising the funeral of my sister and representing the HIV community. That was such a hard choice. Deep down, I knew my sister would have loved me to carry on doing what is my passion in life, representing and speaking out on behalf of the HIV community. So, with a broken heart I made my way to Warsaw to meet up with my dear HIV community and our partners.

I realised that we as a HIV community are able to contribute to fighting HIV stigma in so many different ways. Whenever we can we should be…

Speaking out

The 17^th of October was an exciting day for me to speak out as HIV stigmafighter at the Stigma and Discrimination Forum which was organised a day before EACS. It was a great moment to point out the persisting stigma in the healthcare system. Thank you Virology Education for giving the HIV community an opportunity to speak out.

Group photo of forum participants and organisers. Photo credit: Krystian Lipiec

Debating

The next day I was a penalist in the WAVE (Women against Viruses Europe) workshop “I am every woman“ where I was representing migrant women living with HIV. I believe that powerful migrant women, open about their status, are key to briding the gaps between the healthcare system and migrant women living with HIV. How else will we improve access to PrEP? Thank you WAVE, for giving migrant women a chance to share their stories and insights.

Sharing

On the 19^th I shared my HIV jounery as a motivational speaker in the ‘community corner’ organized by European AIDS Treatment Group (EATG). I am so glad to see these dedicated spaces where the HIV community can interact with our partners. These are always the most vibrant spaces of any conference!

EACS Community Corner. Photo credit: Steven Doyle

Coaching

My week in Warsaw ended on a very high note! Together with AFEW International, Positive Women and Fundacija HelpNowHub I organised a positive lunch for Ukrainian women living with HIV in Poland. This was a great moment to work together on our dreamtrees and share and discuss our futures of living with HIV. I was truly touched by the resilience of the women I met, it was a very memorable Sunday!

You may have noticed that lately I have been priviliged to engage at different events, such as Fast-Track Cities, Virology Education’s Forum on Stigma and dicrimination and EACS 2023. I am noticing a very positive trend: More and more of our partners see the HIV community as empowered citizens in our global fight against HIV. If together we keep on making sure that our voices are being heard around issues such as PrEP diversity, fighting HIV stigma, growing up positively with HIV, we can bring real change to the lives of people living with HIV.

At EACS 2023 I was able to witness the great work the HIV community continues doing. Together with our partners, we can make the transformation of their work into our HIV community. Without the HIV community there will be no science.

Keep empowering our HIV community and be inspired by us for great positive outcomes!

Thank you sister, peace in heaven,

Eliane

A vivacious HIV community

29 September 202310 February 2025hivstigmafighter

My lovely people, these past few days I have been very proactive and this is really boosting my confidence and energy as well.

Last weekend I was invited to give a THRIVE workshop during the 4th National HIV positive Day, an initiative by Utopia_BXL, which aims to bring together the Belgian HIV community and partners in Brussels, Belgium. This was a great opportunity to share THRIVE with the HIV community as a valuable contribution to living and ageing healthily with HIV.

The THRIVE workshop was scheduled in the afternoon after a morning mostly filled with presentations and discussion about quality of life, challenges of the migrant community in Belgium, etc. Following these, THRIVE is perfect as it is engaging and fun. In a THRIVE workshop there is no time for boring powerpoints or keynote speakers. No, THRIVE is all about being lively, excited and energetic. In other words about being vivacious!

THRIVE started by exploring the dreams and aspiration of the HIV community and our allies. This was the first time ever to use the unique dreamtrees co-designed with our thrivers. And participants were really passionate about making their own dreamtrees and eager to share their pieces of art. Aren’t they lovely?

What is so good about the dreamtree is that by sharing their future, the participants get very practical hints and tips from others on small steps they could take now. And also on how to remain patient and focused on achieving their bigger dreams.

The favourite game for many participants was our brand new addition, the Tower of Trust! They really loved the feature built into the game where you can ask questions that have been bothering them and that they would never even ask to their own family, friends, or doctor…

This was their chance to pose them by hiding them in the Tower of Trust. So, with all these questions hidden in the Tower, no one will know who posed it.

Then, when any question is drawn, we would discuss together without any judgement. Participants really loved this game because they have so much freedom to express themselves anonymously and then have lively discussions about issues that are bothering the HIV community. Many wished we would have more time to play it!

Example of a tower of trust question: “Why am I the only person in my entire family living with HIV?”

The final three steps (Spark, Grow and THRIVE) we celebrated being part of the HIV community. I ‘sparked’ the party with a poem called ‘It is my time to fight HIV stigma’. And yes, it was my debut to cite it in French! We then learned taking some baby steps towards living positively, Africa style, and finished the workshop with a positive dance, energized by some sweeping Africans songs.

What a workshop! I understood it was very much appreciated by the participants and some requested if we could do it again in future. It gave me immense joy to see that my vision to live and age healthily with HIV can be put into action by the HIV community itself.

I am so proud that THRIVE can be a part of creating a vivacious HIV community!

Peace,

Eliane

Can we be brave together?

25 August 202310 February 2025hivstigmafighter

My lovely people, in many cities all over the world we celebrate Pride in August. Pride is an important moment for the LGBTQIA+ Community to express themselves.

Thanks to an invitation from Sensoa Belgium, I was happily part of Antwerp Pride and contribute to their campaign Is PrEP iets voor jou? (is PrEP something for you?). A key moment was the parade on the 12^th of August. I found it very inspirational to join the parade and I also learned that still so many people are not aware or don’t even know about PrEP as a way to prevent someone HIV negative from getting HIV.

During Pride, Antwerp transforms into a brave space where everyone can be who they are within a respectful society. This also means having the courage to stand up and act against stigma and discrimination. Therefore, I was very proud to promote PrEP Diversity. As I pointed out, many people, especially women, with a migrant background are still overseen in stigma reduction and prevention efforts and still do not have equal access to PrEP. I am proud that I contributed to making Antwerp an even braver space by demanding PrEp diversity!

During Antwerp Pride I also celebrated many performances of local artists with so many people who truly felt safe to express themselves in this brave space. It fills me with joy to see them join Pride and be themselves because we manage to create this brave space.

Yet, let’s not forget that many cannot be who they are in their homelands. I wish a brave space would exist anywhere in the world, and not only during one week of Pride each year. A brave space should really not be an event like Christmas, where we wait the whole year to celebrate for a few days and then move on again. We should be able to express ourselves every day!

Frederick Douglass once said “If there is no struggle, there is no progress”, and we should work hard with communities, organisations and governments to promote and protect the human rights of all persons, including the LGBTQIA+ community, without stigma and discrimination.

So let us normalise brave spaces, and the easiest way is to start with yourself by creating a space in your heart to accept and respect each and everyone’s choice to be themselves every day of the year!

Can we all be Brave together?

Peace,

Eliane

THRIVE

28 July 202318 August 2023hivstigmafighter

Hello my lovely people. Some of us are always counting their age, forgetting to do the things that make them happy. Remember, there is no such thing as putting your life on hold, because we are all ageing, every day!

This may sound weird, but I am always looking forward to ageing. When you cherish your dreams and love your life, ageing should not be your problem. As long as you are happy with yourself! Look at Eric the dragking, never giving a damn about age at all. Who knew I would be the first Dragking to be open about thriving with HIV?

Of course, for many of us living with HIV, it is quite a journey to get to this comfortable place that we all need to live and age healthily. Knowing first-hand how difficult it is and how many barriers we need to break, I have always been very committed as an activist member of the HIV community to share my personal experiences to change my lifestyle to improve my health-related quality of life.

Yes, there are many discussions and workshops on this topic, but how many of us really work together with people living and ageing with HIV instead of for them? So being always full of ideas as an HIV activist and entrepreneur, you may remember that last year I gave a performance called five ways to THRIVE. Well, sending the message through a performance or workshop is not enough!

What if we ask the HIV community directly to share their dreams, what they do to regain trust, and to share their journeys towards staying healthy while ageing with HIV?

Today I would like to share with you that we have indeed started to engage the HIV community to co-design community tools to express our challenges, and share our dreams and ideas to age healthily!

I am so blessed to get a lot of support from friends in the worldwide HIV community to think along, THRIVE is very much alive!

Through THRIVE we, as creative members of the HIV community, want to keep developing useful concepts and share our experiences. But we cannot do this alone and we will need support from our HIV allies to work with us to THRIVE while ageing healthily with HIV.

So, are you curious how you can engage with us? Get in touch and let’s THRIVE together!

Peace,

Eliane

Equalize!

6 December 20228 March 2025hivstigmafighter

My lovely people, a lot of good things have happened these past days in Gihanga!

To celebrate World Aids Day 2022, Inyambo Stars together with RBP+ (an association of People living with HIV) organized the “Stop HIV stigma show” in the commune of Gihanga on the 3^rd of December. I was very privileged to support them to organise this show for the third time.

During the opening speech I pointed out that it is very sad to see people still dying because of AIDS in 2022. And how shocking it is to hear children are still born with HIV, or of people who stop their medication because they heard they are Undetectable. This shows the need for all these talents to keep up their support to empower communities in Gihanga, Bubanza and all of Burundi on key health messages around HIV and AIDS.

The show was all about using our community’s talents to empower people living with or affected by HIV and AIDS to learn about and build their capacity to fight HIV & AIDS and address HIV stigma. Combining various talents and arts forms is a great way to bring HIV education, and I am glad the Inyambo Stars share this passion with me. Share our talent and break HIV stigma!

So, we brought together different talents: The fashionistas of Inyambo stars, the Indigenous Batwa Cultural group Ubumwe from Gahwazi, musical youth of Inyambo Voices, the supertalented artist Didy Love, and many more. Together we created a fantastic day for the community of Gihanga to remember. In all the performances key messages around HIV/AIDS came back like “fight HIV and AIDS but don’t stigmatize people living with HIV”, “Do HIV testing” and “Take medication every day”.

Here is an impression of the day:

Opening the show through traditional Burundian dance by the Batwa Cultural group Ubumwe

The fashionistas from club Inyambo Stars want to contribute to empowering young people to change the narrative on HIV and AIDS by normalizing the disease. Their wish is to organise more campaigns using fashion as an arts form to bring health messages beyond Gihanga, across Burundi.

Gihanga music artist Didy Love, proud member of Inyambo stars, did an energetic performance while also sharing key HIV messages

Inyambo voices shared their recently released song on fighting HIV stigma

Our common goal as artists was to make sure that as many as possible young people would be able to engage with us on this day. I believe that can one day they can become our hivstigmafighters, that they will be listened to by other youth and will help to build a new generation that is open minded and better informed about HIV and AIDS. This is a how we equalize the system.

I would like to thank the Administrator of Gihanga commune who gave us the permission for this great day and sent his first adviser to join us on. It is great to see them engage in our community and see what Inyambo Stars and other talents are able to show and give back to their community. I was also pleased by the presence of RBP+ and how they appreciated the support given by the Youth in Gihanga. Finally thanks to the DJs MC Chadou and MC Jerome, and Zoe Brand designers. Together we showed that one day we will win this battle!

So this was the third “Stop HIV stigma show” in Gihanga community and I hope there are more to come. I am really excited to continue my support to Inyambo Stars and others to organise their next event. If you want to support them please do, they will be very grateful to continue developing and sharing their talents to break HIV stigma!

Together we can!

Peace,

Eliane.

Unity

18 September 20228 March 2025hivstigmafighter

Each year during the first weekend of September the Airborne March, commemorating the 1944 battle of Arnhem, is organised in Oosterbeek. I did this beautiful walk for the first time in 2019, just before the corona pandemic. This year, my wish to walk once again with my neighbour and friend, Wanda and Norma, was finally granted. It was a very hot day but we managed to get to the finish.

What really inspired me was the diversity of people during this march! Young and old people, mothers with children in strollers, people with a disability… I asked a woman of respectable age with a stroller “How many kilometers are you walking?” and she replied with determination “10 kilometers!”. I was very proud of her. I also asked a young girl how many times she joined the march and she said that it was her 6^th time already. So I asked how she did this, and she said that since she was baby, her grandparents carried her with them and that this was the first time she could walk the march all by herself!

Overall the event is real fun, even people encouraging us along the street were very engaged. Some offered us, complete strangers, to use their toilet in their home, provided water to people and pets (yes, in the Netherlands people are dog lovers), offered fruits, sweets, and biscuits. I read a lot of appreciation of what we were doing.

I concluded that it does not matter where you come from, you can participate no matter what you look like or in which shape you are. This day is really all inclusive and helps to unite people, both participants and spectators. Together we inspire each other to both continue to remember and learn from the past, yet also shape the outlines of an inclusive future.

That day I learned that remembering the past does not mean only focusing on the negativity, it is also an opportunity to educate the younger generation and encourage them and apply the learning to keep making a positive impact in our communities.

So, what if we also strive for more diversity and inclusion in our HIV community, where we still face so many issues around HIV prevention and stigma and discrimination? Where we are still struggling to reach vulnerable people that are marginalised? Let us learn from events such as the Airborne March how we in the HIV community can unite people living with HIV, onlookers, and care givers to fight HIV stigma!

For the Airborne March I can now proudly add a wing to my medal. A win-win situation since it helps me to maintain my healthy new me lifestyle and it inspires me to keep fighting together for a stigma free world.

Peace ,

Eliane

Share talent, break HIV stigma

24 August 202225 August 2022hivstigmafighter

I was honoured to be selected by IAS to participate at the 24^th International AIDS Conference. AIDS2022 took in place in Montreal between 27 July and 2 August.

Let me first of all state that everyone, including me, was so disappointed that so many participants where denied visa by the Canadian Government. I was looking forwards to meet Delegates from Burundi and other parts of Africa, butso many did not make it in the end. If Governments continue to exclude delegates from countries where the pandemic hits hardest, how will we end HIV in 2030?

Now on to my time at AIDS2022. I kicked off strong right away! On the 27th of July I was a speaker on the 9^th International Indigenous Pre-conference on HIV and AIDS. I was humbled to share the experiences of the indigenous (Batwa) community of Burundi. To me it is clear – all over the World indigenous people are still facing inequalities, leading to relatively higher numbers of indigenous people affected by HIV and AIDS whilst also facing reduced access to HIV education and care givers. We cannot end HIV and AIDS when we leave indigenous people behind!

Panel member of the Indigenous pre-conference

There is still much so much to do around education, awareness raising, access to health campaigns for the indigenous community. This is true at least for my home country Burundi, hence also my commitment to breaking this trend. This event gave me refreshing insights into working with indigenous people to address HIV/ AIDS and other pandemics, and planted the seeds for new partnerships in Burundi and elsewhere.

Together with Karl Schmid from +life at the U=U Summit

My second major activity was to participate in the U=U Summit on the 28th of July where I was able to meet many of my fellow activists after so many years only communicating online. Did you know that there are still a lot of countries that are not endorsing U=U? This despite knowing that U=U is an immediate and effective response to destroy HIV Stigma which is still a public health emergency. Again we have to keep on investing in finding the right ways to break HIV stigma!

Ready for action! The Stories of Hope stand at the Global Village

Which brings me to Stories of Hope! The main reason to be on this conference was to share my project through a 3-days exhibition at the Global Village from 29 July to 2 August . As many of you already know, Stories of hope is an initiative where people living with HIV share their talents to break HIV stigma. The launch of Stories of Hope in 2021 was supported by EATG, and the exhibition was proudly supported by HIV vereniging through sponsoring of beautiful materials and hand-outs. Organising an exhibitions at the Global village, allowing me to meet so many activists, artists and conference participants gave me a such positive energy! I am so proud that Stories of hope has reached so many global delegates and that Stories of Hope unites us in breaking HIV stigma by sharing our talent.

Interacting with global delegates during the 3 days exhibition

There were so many amazing side events to still do around the conference. Just to highlight a few: I participated at the famous AIDS Conference party called “No pants, no Problem” where I performed as Eric the Drag King and performed a dance called “Flush out HIV stigma”. We actually managed to raise 12,000 Canadian Dollars during the event in support of HIV+ women. Eric the Drag King is another me you did not know about, right? Again another great way to share my talent to break HIV stigma.

Eric the Drag King at No pants, no problem

I am very thankful to be part of AIDS2022. I want to extend a personal thank you to the Heroes of Hope who shared their stories during the conference; Adam, Matthew, Gloria and Faustine. And I know there are still more Stories of Hope to come from other people I met at AIDS2022. Keep an eye on Stories of Hope for more interviews and portraits!

Share talent, break HIV stigma!

Peace,

Eliane

Ambassador of Hope

18 July 202225 August 2022hivstigmafighter

Today we are celebrating one year Stories of Hope! And we have achieved so much since our official launch on 18 July 2021, Mandela Day. Early last year, we started Stories of Hope with two Heroes, and since then our community has grown to eleven Heroes already!

You may remember that last year we highlighted the important role that Nelson Mandela fulfilled throughout his life for vulnerable people facing stigma of any kind.

Today, on Nelson’s birthday, we are proud to share a touching interview with our friend Adam Castillejo, and a true Ambassador of Hope for the global HIV community. We do hope that Adam will also be an inspiration to all of us!

Meanwhile we are very busy preparing for AIDS2022 as next week around this time we will be travelling to Montreal. We are so excited to connect to fellow activists, role models, and so many more inspiring people.

We also set ourselves a target, namely to capture and share at least one new Story of Hope on each conference day! To make this happen, we really need YOU!

So reach out to us and visit the Stories of Hope booth GVE013 at AIDS2022!

FIVE ways to THRIVE

28 January 20228 March 2025hivstigmafighter

This month I had the opportunity to participate in the ‘Stories from HIV Long-Term Thrivers’ forum where I gave a spoken word performance alongside an amazing and inspiring panel. The forum was organized by ViiV healthcare.

How did I give this spoken word performance? I decided to share my 5 ways to thrive! Even today, to many people HIV is still seen as a disease to be ashamed of, they consider it as a big challenge while actually you can live a perfectly happy and healthy life. Here are my 5 ways to thrive for those who missed my performance:

Trust (again)

In 2003, when a doctor told me to buy my coffin when I was diagnosed with HIV and sent me away desperate, without a prescription, I spent a few hours thinking only about my death. I lost all confidence to live. Instead of looking for help, I started preparing my funeral. Hope started glowing when my husband brought me to another hospital for sound advice and to get my HIV treatment started. When I held my first pills in my hand, I rejoiced in taking them because I firmly believed they were going to save my life. Only after regaining trust in myself, I was able to work on my next step…

Move (my body)

My new reality made me even more aware of the importance to keep myself in shape and healthy. But what what get me going? In 2003, I wore a beautiful sky blue wedding dress and I set myself as a goal to wear it again at my 20th wedding anniversary next year. So, I decided to walk at least 10 km every day to keep me in shape and make sure for me wedding dress to fit me again. Another really important driver was for me to reduce the number of pills I am taking as I also need to take care of my diabetes. So as a huge added benefit of my daily walks I was also able to reduce 4 pills. And my weight? Well, I lost 8 kg so far, just a tiny bit to go. I like my healthy new me!

You all know by now that I came out of the closet with a big bang! As a campaign poster girl, with my message posted all over Amsterdam. After staying with my secret for more than 10 years, sharing my story with the world was a huge relief for me and made me even stronger and more courageous. It was also a great motivator to help more people in the HIV community, for example by peer counselling and support people living with HIV on emotional well being. It also motivated me to learn ever more about HIV, related stigma and existing inequalities in the world. Last but not least, I also launched an initiative called Stories of Hope to show the diversity and talents of the HIV community worldwide.

Perform (my arts)

My greatest passion has always been to be on the stage. Since very early on in my life, I liked entertaining people. And I do so in many different ways, as a poet, through traditional Burundian dance or playing my indonongo… While I am lucky to consider my passion as my job, my key message to all of you is to work out routines, find hobbies or simply try to enjoy your job and all other great things in life. Creating and maintaining a diverse lifestyle is probably really my biggest secret to staying healthy. So, despite having gone through so much in my life, I am confidently looking forward to growing old.

Dream (my desires)

Unfortunately, in Africa people living with HIV/ AIDS are still dying. My nephew Kevin lost both his parents because of AIDS within 8 days in the year 2015. During the forum I shared my wish for a world where children like Kevin will not lose their parents anymore, where they can access health services so they can get tested and treated, and where they can grow old in good health. And right now, for Kevin I wish he can be supported to grow up in a community where he will not be stigmatised.

Yes it is possible to thrive whilst living with HIV. I, and many others in the HIV community, am an example of that. I am always proud to share my little secrets to growing old while enjoying my life with HIV!

A bouquet of problems

12 November 20218 March 2025hivstigmafighter

My birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.

After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.

As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”; Stigma, discrimination and criminalization.

During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period.

Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!

It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.

Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.

By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!

Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!

Peace,

Eliane