Nelson Mandela once said “Live life as though nobody is watching, and express yourself as though everyone is listening.” This is the heartbeat of Stories of Hope, an initiative launched in 2021 and dedicated to all courageous Heroes of Hope sharing their talent to break HIV stigma and discrimination.
In a world where silence fuels stigma, many Heroes of Hope choose art as their megaphone. They step into the spotlight not for fame, but to give a voice to those muted by shame and discrimination. Through dance, photography, poetry, painting, and performance, they transform their lived experience into expressions that resonate, agitate, and heal.
It is therefore with great honor that today, on Mandely Day 2025, we proudly share the portrait of a great friend and talent Adriana Bertini, a Brazilian artist and activist renowned for her decades long HIV activism through provocative art. Through her art she is able to build experiences and capture what matters in our HIV community, showing her commitment to fight HIV stigma. Read Adriana’s story here.
In many places in the world, where people living with HIV face stigma and discrimination, Heroes of Hope use their creativity to humanize the realities of people living with HIV. Art such as Adriana’s couture art contributes to creating safe spaces in our HIV community where dignity is restored and fear of stigma is replaced with connection.
So today, let’s express ourselves as if everyone is listening! Let’s admire the provocative works of Adriana, whose art has long defied HIV stigma, and honour a vision where expression becomes activism and art becomes hope. This is Mandela Day, Adriana’s way.
Today we are celebrating International Women’s Day with a very interesting theme: ”Accelerate Action”.
Worldwide, strong women are working hard to ensure their fundamental needs and rights are being met in their communities. Accelerating action is about their fight to remove systemic barriers and inequalities that prevent them from claiming their fundamental rights. They are united in their aim for women and girls to thrive and exercise their rights without discrimination or disadvantage. And they know it is essential to work with women from marginalized communities, including indigenous people, sex workers, and transgender people.
I am extremely proud to present three (!) remarkable women from different parts of the world who all in their unique ways contribute to empowering women and girls in their communities to improve access to HIV services and fight against HIV stigma. They show us that there are so many ways we can contribute to empowering women, whether through research, journalism, awareness raising or teaching. Let’s meet our three new Heroes of Hope!
Maahi, a transwoman living with HIV from Pakistan, is the founder of the first trans-led network of People Living with HIV in Pakistan, a brilliant teacher at a transgender school and a global advocate for the rights and well-being of transgender people living with HIV.
Claudette is an indigenous woman from the Kehewin Cree Nation in Alberta, Canada. During her 30 years of living with HIV, through her work as a wisdom speaker on HIV and indigenous-focused research, she has grown into a leader in HIV action amongst indigenous women in Canada.
Harriet experienced the devastating impact of HIV and AIDS in the early 1990’s while supporting people living with HIV in Germany. Today, her lived experiences and skills as a journalist and sexologist strengthen her in her fight for the rights of sex workers.
Need I say more? All of our three icons work with so much compassion within their communities, sharing their experiences and efforts at the global stage to inspire all of us to accelerate much needed action to positively impact the lives of women and girls affected by the global HIV epidemic.
I am very glad to call them Heroes of Hope who truly contribute immensely to this year’s theme of accelerating action for women and girls. Let’s support local HIV action to continue bringing positive changes to our HIV communities!
Click on the images above to read their individual Stories or find them and other Heroes of Hope here!
Nelson Mandela once said “A winner is a dreamer who never gives up”. I continue to dream of a World free of Stigma and I know that soon this dream will come true for me to be a winner. But I am not the only one having this dream as we all know that HIV stigma and discrimination are global issues, so we need to continue joining our forces as much as we can.
Last year when visiting my HIV allies in South Korea I realized that HIV stigma is still very high in South Korea, so even today you will hardely see people open about HIV. Luckily, grassroots organizations are working really hard to fight HIV stigma and discrimination. I am happy to be connected to them and support them in whatever way I can.
There are many ways to convey a positive image of people living with HIV, one of them is Stories of Hope. What started as a small local initiative has now grown into a platform of global Heroes of hope who are eager to share their superpowers that helped them to break HIV stigma. Thanks to the digital world, I was happy to connect with a Korean HIV artivist, Zang Choi who is our newest Hero of Hope!
Zang Choi is living positively and uses their visual arts to create a space that encourages young people to discuss really important issues related to HIV and the LGBTQIA+ community in Korea. Through their HIV artivism, Zang Choi is truly committed to bring much needed change to break HIV stigma in Korea. Read Zang Choi’s story here!
HIV artivism is a beautiful tool to use to bring awareness about HIV and break the stigma. I am so happy to be connected to Zang Choi and so many others who fight HIV stigma using HIV artivism. Those that know me, are also well aware that there are so many ways how HIV artivism can reach parts of the HIV community, including young people of the LGBTQIA+ community, that are hard to reach through conventional approaches. We have to use all approaches available to break HIV stigma!
I am proud to contribute to HIV artivism through Eric the Dragking or interactive story telling such as Urugendo (A HIV journey). I am always happy to connect and explore with you how we can increase the impact of HIV artivism around the world!
Remember, we cannot achieve my dream of a World free of HIV stigma alone, we need to join our hands and passion for arts as much as we can worldwide.
I am proud that that Zang choi is joining our Community of Heroes of Hope. Thank you very much! 매우 감사합니다
My lovely people, you may wonder how I spend my World AIDS Day. Although on the first of December I was in Eindhoven, the Netherlands, with the PrEpNu outreach team to share information about PrEP at an LGBTQIA+ refugee event organised by COC the Netherlands, my heart was full of excitement of what was happening in Gihanga in Burundi.
In my home country Burundi there are 13.24 million people of which 2.9% are living with HIV. This means 383.000 people! Many of them still do not have reliable access to HIV treatment and HIV stigma and prejuduces are still widespread throughout Burundi. That’s not cool!!!
When my cousin Sifa and her husband died of AIDS in 2015, I was already living more than 10 years with HIV. Sifa was not ready to accept her diagnosis, she and her husband did not dare to go for treatment as they were afraid that people would judge them. In the end they were killed by HIV stigma. Later on, I learned about another aunty who died in silence, they found out too late. This did drive me mad! I started asking myself how can we normalize HIV in my community?
I know what works as I am already using arts as a powerful tool to engage people in HIV awereness, education and stigma reduction. Even when I was young we used music and dance to promote peace during the war. We can use art to kill stigma too!
That is how I started working with local artists from my hometown Gihanga and founded the youth association Inyambo STARS. On World AIDS Day 2020 we hosted the first “Gihanga Talent show”. When we saw the success of this show, we decided to continue to support and encourage young talents in Gihanga to help spread the message on HIV awareness and stigma reduction.
This fifth edition of the Gihanga Talent Show was about solidarity with people living with HIV. It was the most diverse ever as we opened the event for many differents categories; We saw young talents singing, performing modern and traditional dance, performing theater, and doing catwalks.
When I received the images of the event it made me emotional and I could not help myself to shed a tear of joy. Look at these images, there is so much young talent and there are so many young people enjoying the show in this tiny village in the heart of Africa!
Lyse Bella from BAWA
One of the most memorable moments of the event was when Lyse Bella, a young woman from the Burundian Association for Women in Action (BAWA), shared her story about living with HIV for the first time. She was very proud to answer so many questions from the audience and she got many compliments from young girls and boys. She stressed that it is very important to keep on education the young generation if we want to eradicate HIV and the stigma surrounding it.
Also during the event, Irene Kundubumwe from Inyambo STARS gave a talk about PrEP. The next day I heard a funny story about a few young boys that went to a Gihanga health official to ask for PrEP. He told them to first get tested so they can get a prescription from a doctor and then get PrEP for free. This shows how easy HIV awareness messages can be spread through these kind of events and that we should invest more in public events and HIV prevention services.
We are targeting a young generation. Combining arts, bringing joy to young people and fighting HIV stigma is a powerful combination. I am so proud of all 2024 Gihanga Talent Show winners and all the other young talents who joined the event, your artistic contributions and messages on HIV stigma reduction are truly appreciated. Your presence and dedication shows that we, people living with HIV, are supported by our community.
My wish for the 6th edition of the Gihanga Talent Show is to include an HIV testing facility during the event, so that many people who want to do an HIV test can do it right way. Do you know that you can also help us out? A tiny contribution to the event can make a huge difference. This is really important locally-led HIV action which must be funded more!
Finally, I would like to thank the Inyambo STARS team, jury members MC MachadEnos PROAkim Landry and MC Jerome Umutarambigwa, BAWA and PrEP educator Irene Kundubumwe for making the Gihanga Talent Show a memorable event on World AIDS Day 2024.
Since last year’s Mandela day, which is always on the 18th of July, STORIES OF HOPE includes portraits about our dear allies of PLWH in recognition of their contribution to ending HIV and AIDS. In August 2023, Jennifer Hopelezz, a truly remarkable HIV drag activist and ally, was induced into the Heroes of Hope gallery.
Almost one year later, while eagerly anticipating the start of AIDS 2024 in Munich on 22 July, we will be looking forward with Jennifer to AIDS 2024 and give her the honour to introduce our newest Hero of Hope who happens to be Jennifer’s family!
Jennifer; when you hear AIDS 2024’s theme ‘putting people first’, what does this really mean for you?
“Well to me, it’s a little bit too obvious because of course that’s what you expect, people first before profits and organizations and businesses. But sometimes that seems to get lost and it all seems about the whole infrastructure around HIV/AIDS that has been built up over the last 40 years.”
Jennifer, from your perspective, what do you think should change to ensure that community-based organisations are empowered to apply a ‘people first’ approach to their HIV response?
“I am always surprised at how little feedback is asked of us as a community group – but also as business owner with sex-on- premise venues. We have a whole heap of experience and information that is not tapped into. We have a totally different perspective to the government organizations, and we also have a certain freedom they don’t have as we are an independent voluntary group.”
Jennifer, you are the mother superior of a large drag family in the Netherlands. To celebrate diversity in the wonderful world of drag, in 2019 you added a new drag house to your family, called Lost Bois. One of your family members is Eric the Dragking. Could you introduce Eric in a few words?
“Eric personifies what our houses stand for. Using the power of drag as a tool of activism, to use the attention you get as a drag performer to get your message across. Because you surely get much more attention when you are in drag! Sex positivity, HIV and AIDS, fighting discrimination-these are really core values of our drag houses and that is what Eric is also about! (He also happens to be one of the best looking kids I have, haha, don’t tell the others!)”
Eric, so nice to meet you and such an inspiring Story of Hope! Why did you decide to do drag and what is your link with the HIV community?
“I decided to perform drag because drag is another powerful way for me to fight stigma and discrimination, and bring change to people and communities. I am living with HIV for 20 years and I know what is like to be stigmatized or discriminated. As Eric the Dragking I can also contribute positively to reducing HIV stigma and improving PrEP awareness in the Queer community.”
Eric, how do you connect your HIV activism with your drag performances?
“I combine my HIV activism with my drag during my performance where I always make sure to be Stomping HIV stigma away. This means that on stage I will be bringing messages of hope for PLWHIV whilst also raising awareness on HIV stigma and access to health services. If together we want to end HIV and AIDS, everyone should know about access to HIV services and prevention and claim it as their right. I like being on stage with artifacts to amplify my HIV activism, it makes people curious and this is a great way to start a positive conversation on HIV.”
PrEP diversity
Jennifer, as a drag activist you are also strongly advocating for PrEP availability and access. How do you contribute to PrEP diversity and what do you think are the key priorities right now?
“We really need to open our focus from not only cis gay men but to women, transgender people and immigrants. That’s why we are so happy that Eric has joined the PrEPNu outreach team because he knows how to reach these other groups that we don’t. All our networking and all our knowledge is based around the gay scene, especially in Amsterdam. But if we are to end HIV and AIDS, then we need to step out of our bubble and reach these other groups as well.”
Jennifer Hopelezz and Eric the Dragking
So Eric, you will be joining AIDS 2024 in Munich, Germany. What will be your key message there?
“During AIDS 2024 you will find me mainly at the Global village, this is where the global HIV community will be meeting and I am hoping to see a lot of my fellow grassroot HIV allies. My main message will be to share the importance of PrEP Diversity. We should always remember that HIV does not care about gender, sexual orientation or ethnic background. PrEP is designed to prevent against HIV for everyone. I am confident that we can end new infections if we make sure to enable access to PrEP for those who need it. That is why #PrEPdiversity is very necessary.”
Eric, following Jennifer’s Story of Hope last year, you feature in this Story of Hope. How important is this for you?
“I am very grateful to be given this opportunity. In 2021, when Stories of Hope was launched, I shared that I was the first Burundian female to play the Indonongo here in Europe. Back then, Eric was not out of the closet yet. I realise that talent is like champagne, it cannot be bottled up, it has to released to be shared and enjoyed fullest. So today I am so proud to share Eric’s talent, the first Burundian and Dutch Dragking living with HIV and open about it. I hope that my HIV dragtivism will be an inspiration for PLWHIV who are still in the closet and also to serve as an example for those who think that life is over after an HIV diagnosis. I am living proof that HIV will never take away your talent!”
Are you talented and never let HIV stigma stand in your way? We are looking for talents to share their experience during World AIDS day on the 1st of December 2024.
Get in touch if you would like to share your story with the global HIV community!
Today is World AIDS Day and the theme is “Let communities Lead”.
We have been facing HIV stigma over the past 40 years. While nowadays in many parts of the world people living with HIV can live a healthy and long life as long as they access good health services. At the same time let us not ignore the fact that “STIGMA KILLS” and contines to harm more people.
In 2021 Stories of Hope started as a locally-led initiative in our fight against HIV stigma and discrimination. We now represent a global community of talented people living with HIV and, since recently, our HIV allies. On Stories of Hope they share their stories about breaking HIV stigma. Today we are very proud to introduce our fabulous Hero of Hope Luis Noguera as they share their incredible fight against HIV stigma.
Thank you Luis!
Read more about HIV Stigmafighter, the driving force behind Stories of Hope.
Today we are celebrating World AIDS day. Being part of the HIV community I try to contribute in as many ways as possible to fight HIV stigma and discrimination. So as HIV Stigmafighter you can see me connecting and speaking up digitally and physically, globally and locally.
This year’s theme is ‘Let Communities Lead’. As regular readers know, in previous blogs I have been pointing out how important it is to be part of thriving local communities and making sure that our achievements are shared and celebrated at the global level as well to continue inspiring eachother in our fight against HIV stigma and discrimination.
I am very proud of my close connection to the Irish HIV community. My first contribution as HIV Stigmafighter to the Irish community was last year when I was part of a photo exhibition on people living with HIV, organised by Steven Doyle, joined Robbie Lawlor’s and Lady Veda’s Pozvibe podcast, and attended the HIV Ireland conference.
Fun at the Pozvibe podcast with Robbie & Veda
Ireland here I come (Photo: Sil-Hong Won)
Today I am proudly joining the Irish community as Eric the dragking ‘a colourful black ray, stomping stigma away’ at the famous The George nightclub in Dublin! Being part of this amazing entourage already earned me the title of Irish talent.
On stage I am excited to join artist and activist Luis Noguera which is a very special moment as Luis is also our newest Hero of Hope on our Stories of Hope platform. Please read Luis’ touching story of overcoming HIV stigma and shame!
Luis Noguera (Photo: @ciarangildea)
To me these past two year of working with the Irish HIV community to fight HIV stigma in so many creative ways is a very good example of how local HIV communities should lead our global drive to fight HIV stigma. We need our partners to seriously listen to us to make sure that addressing our challenges, ideas and solutions are made core in global and local HIV action.
The burden of the hiv epidemic has never only been carried by the nearly 85 million people infected by HIV since the beginning of the epidemic. The pain, loss and grief of dealing with and our fight against the HIV epidemic is shared by so many more; Orphans of parents that passed away who are discriminated, family members whose relations are strained, caregivers of people living with HIV, activists campaigning for PrEP access, and so on…
Two years after the launch of Stories of Hope on Mandela day 18th of July 2021, we would like to pay honour to these caregivers and the millions of people affected by HIV.
Nelson Mandela once said ‘If we are to accomplish anything in this world it will in equal measure be due to the work and achievement of others’. Therefore, let us remember their struggle and celebrate their contributions as well in our fight against the HIV epidemic and on-going stigma and discrimination.
In honour of the wise words of Nelson Mandela, as of now we will also bring their inspiring stories to the Stories of Hope platform. Because in the end, they are the biggest allies of people living with HIV and their stories are equally important to be recorded and told.
So, we are extremely proud to introduce Daria, our very first Hero of Hope who is not living with HIV herself. According to Daria, “what matters is that you can help others” to claim access to health services and create a HIV stigma free society.
We hope there will be many more people like Daria to join our growing community of Heroes of Hope. What connects us all is to realise a world where people living with HIV are healthy citizens free from stigma.
Many people know me as a person living with HIV. So when I talk about my long-term fight with diabetes, they get surprised and often ask “Oh do you have a diabetes too?” Double trouble, that’s what I call it. In my memory the symptoms of high blood sugar levels started in 1997, and I was offically diagnosed in June 1999 at age 21.
‘School dropout’
Back then I was living at a boarding school, and you cannot imagine how hard it was for me to cope with diabetes while on boarding school food. I had to stop that school year just one month before final A-level examinations. That year I did not abandon school only, I also had to give up on my favorite sugary and fizzy drinks, and many foods. Suddenly it seemed that everything delicious contained those unhealthy sugars!
There was a lot of stigma and myths around diabetes. For example that diabetes was for the elderly or super rich. I was not old or some super rich kid! And then there were the weird stories… I was using insuline which had to be kept cool, and since we did not have a fridge, I had to keep it in a fridge at a local bar as these were the only places with a fridge at the time. Every evening I would go to the bar for my insuline shot and people would always make fun of me. “How come you get a disease of rich people when you are poor?”, “Are you injecting drugs?”, “Stay and drink beer with us!” No matter how they bullied me, I did not give up.
One day, when I saw a mother feeding a 6 months old baby with diabetes, I told myself that if a young mother can manage to keep her baby healthy, I am also able enough to make decisions on how I should manage this chronic disease and grow older with it. Since that day I learned to take control of how to manage my diabetes myself and honestly, after all these years, I have to say that it is not that hard as long as you have the will and motivation.
My sin moments
Jaco
Earlier this month I was at the hospital for my diabetes check up where I ran into my peer Jaco with whom I also share the same doctor. We were chatting and he asked me how long I have been living with diabetes. For me that is almost 25 years now. So I was quite shocked to hear he was 7 years when diagnosed, and that now he is living for 45 years with diabetes. It is amazing to know a long term thriver with diabetes!
Jaco made me really glow to see how healthy and cheerful he is. He is somebody who does not give up easily. I asked him what was the hardest thing since being diagnosed at 7 years? He said “Giving up on eating biscuits”. We laughed hard about that, and I admitted that we have this in common. Then he continued and said ”When I was 11, I told doctors that I cannot continue that diet, I want to eat something sweet sometimes, food that everyone is eating. So they told me that sometimes I could eat a biscuit, but only a little bit and not everyday”.
I asked him “Now that you have been living with diabetes for 45 years, what is your sinning moment?” He said, “There are these Dutch biscuits called speculaas, sometimes I can eat the whole pack. But next day is pay back time! I must also work out by doing sport”. So Jaco cycles and walks everyday for 30 min.
Enjoying a sinful moment
Jaco asked me in return “ What is your moment of sin?” And I said “I like coconut macrons very much. That is the kind of biscuit I can eat every time”. And like Jaco, I pay back and walk my 10+ km.
This is how I can enjoy my life… Sin a bit, and balance my sins with a health lifestyle. We concluded that even when you are living with a chronic disease, you can arrange your life around it, still be cheerful and have a successful life. Jaco does not sit at home defeated by diabetes, he works for a company as an IT architect. And I feel the same about life. I run my company ‘Indonongo’, change the world as HIV Stigmafighter, while taking care of my healthy new me.
I am very thankful our paths crossed. Thank you Jaco, for being an inspiration for many. We don’t let diabetes stand in our way!
After five years absence, this year I was finally able to visit my Motherland Burundi again. My big dream was to rejoin the school children, parents and teachers in my village Murira, part of the commune of Gihanga . I really wanted to check how the primary school children are doing as during my last visit in 2017 I realized that many of them were following lessons sitting on the floor.
While back then I was able to find a temporary solution to do a quick repair of as many school benches to have less kids sitting on the floor, the work was from finished. So that visit was the start of dignity at Schools as every child has a right to quality education! Making sure school children have access to proper means such as school benches is part of that!
This year, thanks to my partners, I was able to give a huge boost to building the capacity of the Burundian team to repair even more benches, making sure they are really sturdy to last a long time. When I arrived in Burundi, I immediately teamed up with parents, teachers and local artisans to get our work going.
While the work was on-going I asked some children how they felt to sit on the floor while they are learning and they were quick to reply ”I get back aches, and after a day my knees and neck hurt very much”, “I have trouble to concentrate” and “I cannot write well because I am using my knees as a table”. I also asked about their dreams, why they are studying hard, so Kessia told me that her dream is to become a doctor, Fanny wants to be a singer while Chris wants to become a model. But how can they make their dream come true when they are learning in such poor conditions? Every child has a right to education, they should not sit on the floor!
In Burundi they call young Children “Burundi Bw’ejo” which means “ Burundi of tomorrow”. We all know how important good education is for children, they are our future. So we better act very fast! And that is what we did. Together with our local team we worked very hard for the children of Murira these past weeks and yesterday the moment arrived to finish our first 50 schools benches to help at least primary school children in Murira to attend their school in dignity.
I was so proud to see the kids’ warm smiles and joy when they received the benches. So, while we are celebrating this success, there is so much more work to do since there are still more classes without chairs and my dream is that each primary school kid in the whole of Gihanga should be able to follow education in comfort.
While we are nearing the end of 2022, I am very confident that the Gihanga team will continue to work very hard for their “ Burundi of tomorrow” beyond this year as well. They have really shown me that they are able to do so much more, so if their story inspires you to help them out, feel free to get in touch with me!
I feel so proud of the people of Gihanga to care for their children and I want to thank everyone who supported them, wherever you are in the World. Together we are bringing positive change for the Future Generation, Burundi Bw’Ejo.
HIV stigmafighter 