Last night, the Amsterdam Dinner Event once again proved its power as the Netherlands’ largest annual fundraiser for innovative, life-saving HIV initiatives. This year’s focus, PrEP access, could not have been more urgent. The commitment to funding PrEP for young women and girls in Kenya and strengthening prevention here in the Netherlands is a step in the right direction.
But let’s talk about reality.
For years, grassroots activists and local HIV communities have fought tirelessly for equitable PrEP access. Yet, as Eric the Dragking pointed out yesterday, we still remain largely UNSEEN. The HIV community is not just about legacy organizations, it’s about real people in the community who bring passion, commitment, and groundbreaking innovation. And yet, when funds are raised, they overwhelmingly flow to the same few dominant players. This is a missed opportunity that keeps the status quo intact rather than fostering real change.
Our fight through PrEP Diversity has long challenged this dynamic, advocating for inclusive access and making sure the community – those most affected -have a seat at the table. Last night’s conversation with Princess Mabel affirmed something powerful: when women know about PrEP, they demand it. Visibility matters. Representation matters. Knowledge matters.
And now, €1.2 million has been raised. The question is: how will it be spent? Will it truly reach the women who need it most, or will it largely remain within the conventional circles of power? Will grassroots efforts of those closest to the communities be invited to collaborate, or will they be sidelined once again?
This is the moment to break the cycle. We are ready to work together. We already do; reaching sex workers in Burundi, supporting people living with HIV with a migrant background in the Netherlands, using talent and activism to push PrEP awareness beyond its current limitations. These are the voices that must be uplifted, because this is how we dismantle stigma and drive meaningful prevention.
So yes, thank you, Amsterdam Dinner Foundation. But let’s ensure this money creates real impact, not just reinforces old systems.
I was honoured to speak at the second European LGBTQI+ Health Conference in Brussels—a vibrant gathering of activists, healthcare professionals, researchers, community organizations, and affected individuals from across Europe. The event was filled with incredible discussions, inspiring stories, and groundbreaking initiatives. Here are some impressions, hope you like them!
Addressing stigma through community-led harm reduction initiatives
During this session, my contribution focused on broad spectrum harm reduction Initiatives in the LGBTQI+ context. I shared my personal journey overcoming HIV stigma, highlighting how our talents may transform us into community icons. As one of the initiators of local grassroots initiatives driven by migrants living with HIV, I spoke about the impact of sharing lived experiences and empowering local HIV communities. I also shared my experience as a PrEP advocate and volunteer, working with local organizations such as PrEPNu to ensure access to PrEP as an essential preventive tool.
We also heard from Ismal from AIDS Action Europe, who discussed harm reduction in the chemsex context. Their organization provides training manuals and best practice guidelines for delivering health services tailored to chemsex users. They conduct trainer workshops, facilitate knowledge exchanges, and offer grants for translations and webinars, ensuring widespread accessibility of resources.
Another inspiring initiative came from Osmely José of Accion Triangulo, who uses art and cinema as educational tools through Pride Positivo. Their film screenings actively combat stigma, and they’ve developed an innovative concept—the PAE pill—as a symbol of HIV destigmatization, based on real-life experiences of stigma in healthcare and community settings.
PrEP access & prevention strategies
One of the most crucial discussions revolved around PrEP accessibility. As a volunteer at PrEPnu, I shared our digital outreach strategies, which allow people to access services through PrEPNu’s online platform. Additionally, our outreach teams engage with the LGBTQI+ community at festivals, pride walks, workshops, parties, saunas, and health clinics, ensuring widespread awareness. Unfortunately, PrEP is currently only available at a cost (+/- 30 euros per month) in the Netherlands, which remains a significant barrier.
Other European organizations shared their approaches:
Romania: Mihai from Checkpoint ARAS who opened six PrEP checkpoints under the Checkpoint ARAS Network. These community clinics, situated within hospitals, create safe, non-intimidating environments for key populations. PrEP is also not free in Romania.
Serbia: Duga Association, an LGBTQI+ community-led organization, launched the First Checkpoint offering free HIV testing, doctor consultations, and psychological support. This effort counteracts stigma, geographic barriers, and fragmented services that often discourage people—especially those outside big cities—from seeking care. While PrEP is available in Belgrade pharmacies, it costs €43 per month, making accessibility difficult.
Do you remember the Barcelona checkpoints I visited last year? All these initiatives really create a momentum around PrEP in Europe. I sincerely hope that one day we will see these community-led checkpoints in the Netherlands as well, they are really complementary to the great work already done by PrEPNu! So let us keep fighting for PrEP diversity!
HIV dragtivism
Throughout the conference I had already been highlighting how through creative activism, including HIV dragtivism, we are able to challenge political and healthcare perceptions, pushing for inclusive policies.
Somewhat unplanned, but always ready, I was asked to perform as Eric the Dragking. So on the closing night, participants were able to experience Eric the Dragking stomping HIV stigma alongside them—a symbolic and empowering moment that energized many attendees. In fact, numerous organizations expressed enthusiasm about inviting Eric to their countries to further break HIV stigma and raise PrEP awareness!
The urgent need for global action
While UNAIDS and numerous organizations continue advocating to end HIV and AIDS by 2030, the reality remains troubling: prevention tools exist, yet communities still struggle for access due to political hurdles and greedy pharmaceutical interests. Health is a human right, yet so many LGBTQI+ individuals lack the protections they deserve. So is this target still realistic and how will we reach it? I am convinced that conferences such as these contribute by creating the much-needed space for collaboration, knowledge-sharing, and empowerment. Let’s hope the Netherlands HIV community is listening to their European neighbours!
Let’s hear a few powerful reflections I collected from fellow participants:
> “In times of increasing polarization and prejudice against LGBTQI+ people, institutions, healthcare providers, advocates, and scholars must unite to promote health for all. This conference catalyzed new efforts, bringing together passionate individuals from across Europe and beyond. Let’s work together to foster well-being for everyone!” > — Tabea Hassler, Researcher at the University of Zurich
> “It was incredible to network with so many changemakers improving LGBTQI+ health across Europe. The passion, enthusiasm, and energy of attendees were truly inspiring, and I have no doubt that real action and collaborations will emerge from this event.” > — John Gilmore, University College Dublin
> “The 2nd European Conference on LGBTIQ+ Community Health definitely brought together the best LGBTIQ+ thinkers and practitioners from across Europe at such a crucial time as this, to form new alliances, strengthen our vision, and refine our collective focus.”> —Dr Harvey Kennedy-Pitt
United, we will win this fight
The fight for health equity and LGBTQI+ rights is ongoing—but together, we are strong. Through collaboration, activism, and unwavering determination, we will dismantle barriers and demand accessible, stigma-free healthcare for all.
I urge you to have a look at the manifesto we drafted together during the conference: The manisfesto recognises that LGBTQI+ communities continue to face systemic inequalities, institutional violence, and barriers to essential healthcare. In the manifesto we state that we refuse to accept a system that neglects lived experience, silences community-based knowledge, and denies universal access to care. We demand the recognition of peer support as legitimate healthcare, PrEP access for all, the integration of LGBTQI+ realities in medical training, structural support for community health centers, and our rightful place in public health decision-making. Justice in healthcare is not optional – it’s a necessity. Stand with us. Sign the manifesto. Be part of the change!
Thanks Stephen Barris from Ex Aequo for organising this wonderful conference and looking forward to the next edition!
Let’s keep pushing forward. We are the working force, and our voices matter.
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.
Did you know that 21-27 October is PrEP awareness week? We all know that PrEP is an important way to prevent HIV, but did you know that PrEP is for all ages? Whether you’re younger or older, single or partnered, career-focused or retired, exploring your sexuality, or simply enjoying sexual pleasure – PrEP is for people of all ages and in all phases of life experiences.
Already since 2018 I have been raising awareness on PrEP and advocating for PrEP access as a way to fight HIV. So, let’s celebrate and look back at how I have been able to contribute to improving PrEP access.
Together with BAWA (Burundian Association for Women in Action), we develop and provide PrEP training to vulnerable young women in Burundi.
Community work is important for me. Therefore, as a PrEP Volunteer I support important grassroots organisations such as Sensoa and PrEPNu to amplify their message on PrEP access.
At the global stage I am not afraid to speak out as an HIV activist and advocate for PrEP access. Here I am at the European AIDS conference to speak out on PrEP diversity.
My passion as an artist allows me to reach young people of the queer communitry through my HIV dragtivism. Here you see me on stage at Superball 2024, the biggest dragball of Europe.
Lastly, as a connector I make sure that grassroots organisation such as SHARE Korea are being heard at the global stage and can connect to other HIV community actors and share experiences on PrEP access.
There are so many ways you can contribute to beating HIV in your local community! It is important to keep empowering local communities with knowledge on preventive approaches such as PrEP.
PrEP truly redefines what it means to take ownership of your health. So this week my message is simple – PrEP diversity stands for ensuring that we increase the right to PrEP access for everyone that needs it, no matter what season of life you’re in.
PrEP is essential to end the HIV epidemic. I am proudly contributing to PrEP diversity in my different roles. What have you done to ensure PrEP access in your community?
As many of you know, I always like to show my passion of fighting HIV stigma through many different talents. On the 13th of september it was time for me to express myself as a HIV artivist as I was invited to join a very special celebration of ‘Projekt Afrikaherz’ based in Berlin, Germany.
Already for 25 (!) years Afrikaherz (‘African Heart’) is fighting to improve access to health services for African migrants, with a focus on HIV/AIDS as overall there is limited access to health care, especially for migrants without formal residence status.
I was excited to meet other people from the African community living in vibrant Berlin and to share my passion for African music making, playing my indonongo instrument, singing and dancing with them. Helping to make sure they have an unforgettable experience so they can recharge in their fight against HIV stigma in their local HIV communities.
There were so many HIV-related issues to cover during this marvelous event. History has shown that when we are fighting for our right, we should not give up so easily, no matter how hard things are. I learned that especially in the beginning Afrikaherz went through a hard time with a lot of rejections and disinterest by the health system in Berlin. However, they persevered and through their hard work and insistence, gradually they were able to create a solid name in health & HIV response, also making sure to address the stigma surrounding those living with or affected by HIV and AIDS.
Listening to testimonies of fellow members of the African community in Europe, I realised that eventually they managed to navigate their journey through the German HIV and healthcare system, even if it took them 25 years to make that journey easier for people with an African background in Berlin. They did not give up! This is a truly great achievement worthy of celebration.
After these speeches I was invited to share my personal experience of living 21 years with HIV. I call this urugendo which means life journey. Those of you that know me longer may have already seen me perform urugendo, it is a fun way for me to share my ups and downs and highlight the work I am doing to improve access to health & HIV care and fighting HIV stigma. By the way, if you don’t know urugendo, contact me, I am happy to perform it for you one day 🙂
Immediately after my performance I joined the stage for a panel discussion with fellow HIV activist from Germany Lilian Petry from Deutsche Aidshilfe, Elizabeth Beloe from Federal Association of Migrant Organizations and Susanna Kahlefeld from the Green Party. For me a question that intrigued me was the one about the future of Afrikaherz in 10 years from now. My wish for them is to be able to connect even more with other local HIV organisations and health services in other states in Germany, and even reaching out to organisations in surrounding countries such as those in the Netherlands. Because we all know that the African migrant community is very well connected throughout the whole of Europe and the rest of the World. Organisations such as Afrikaherz are essential to bring positive messages to the African community about access to health & HIV care and fighting HIV stigma. And their message will be so much more powerful if it is amplified to people with a migrant background in the other 15 states of Germany, the Netherlands and other countries. Connected we are stronger!
During the course of the event I realised that there is something we still lack a lot both in Germany and the Netherlands and we must address urgently; When we talk about HIV prevention, PrEP awareness and access must also be actively promoted in migrant communities! While here in the Netherlands great work is done by organisations such as PrEPnu, with a particular focus on Men who have Sex with Men (MSM), and while Afrikaherz does promote the use of condoms, African migrant communities are still left behind when it comes to PrEP. The harsh reality is that there are way too few organisations in our HIV community that are actively promoting PrEP access. So, how can African migrant communities know about PrEP? I cannot repeat often enough how important it is that we take more co-ordinated action to ensure PrEP access for key and high-priority populations.
Rosaline M’Bayo
We will not end HIV and AIDS when we continue ignoring African migrant populations in countries such as the Netherlands and Germany. They have equal rights to good healthcare and HIV prevention services while tailored to their specific needs. Please learn from the example that Rosaline M’Bayo and Stephen Amoa from Afrikaherz are setting and make sure they receive the support needed to do their health & HIV outreach for the African migrant community in Germany!
Back to sharing urugendo and some tunes on my indonongo, I got a lot of positive compliments. People told me that my HIV journey and music inspired them, and that I am a powerwoman. Who doesn’t like receiving such beautiful compliments at times? For me the biggest reward was to connect with people from the migrant community and their HIV allies. I am so proud to listen to their inspiring stories to fight HIV stigma.
Through every connection we realise and cherish, we will make our HIV community stronger. Together we will win our fight against HIV and AIDS!
My lovely people, I promised to share my learning from AIDS 2024 in Munich with you. The two days I spent at the Global Village were quite fruitful as an activist. I decided to go where the noise is this time as it keeps me alive, being together with HIV activists and sharing the concerns of the global HIV community. It has been a fight for 40 years now and HIV activists have been always at the front.
Before making noise, let’s start with the AIDS 2024 theme “Put People First”. I asked myself many times who decides which people to put first? During AIDS 2022 in Montreal and now also at AIDS 2024 in Munich, I literally experienced a barrier between the accessible to all Global Village, thriving with activists and grassroots organisations, and the paid-for conference space full of big Pharma, scientist and policy-makers. In all, there is very limited interaction as most of us cannot enter the conference space and ‘they’ show little interest in meaningful engagement at the Global Village. How can “Put people first” as a slogan work if we already have two faces to AIDS 2024?
Now let’s make some noise!
The global North-South divide
In her speech, UNAIDS Executive Director Winnie Byanyima highlighted the importance of community involvement, especially women and girls, in ending HIV and AIDS. She also regretted the missed opportunities to bring in HIV communities from all over the World, especially since many people representing the Global South continue to face dicrimination by being denied visa to join AIDS 2024. It seems that IAS did not learn from the Montreal debacle and is unwilling to bring about change by making sure conferences are organised in places where representatives from the Global South will not face visa issues.
Credits: Y+Global
Can I ask why IAS and UNAIDS are not taking serious action? How long will the HIV communities in the Global South continue to suffer? Do they realise the mental stress and pain they give to participants when they receive the bad news of visa denial? Are they taking contributions of the Global South on fighting HIV and AIDS in their communities seriously?
Coming back to the theme “Put people First”, in my experience, first and foremost, these organisations are putting themselves and their sponsors first. So, let’s be honest and just say “Put ourselves first”, the Global South comes second. So next time, let HIV communities from the Global south decide where the conference should be held, because remember, big pharma, scientists and policy-makers will not be able to shine without us, the HIV community. They should let us lead! This is why I like the World AIDS day 2023 theme “Let communities lead” so much better.
Women warriors
In the end, there are always many booths in the Global villages, some where very sleepy and not engaging at all, and then there were the noisy ones! Take International Community of Women for example. They were really on fire, demanding that women movements are supported, fighting for gender equality and human rights, recognising that women bear the brunt of HIV stigma and discrimination. We chanted repeatedly “we are ready”! For what? For being empowered in discussions and decision-making, for sharing power, for funding women-led HIV programming! Our existence matters and we need to be included as we cannot win the fight to end HIV and AIDS without women empowerment.
Making noise at ICW
The other inspiring noise was with the Red Umbrella Fund, a sex worker-led participatory fund. As our support to sex-workers in Burundi also highlights, HIV response is incomplete without support to sex-workers. At AIDS 2024, sex-workers and their HIV allies demanded long-term financial support to excercise their work in dignity. So we chanted “Sex work is work”, “Decriminalize sex work NOW!” Yes, we should put sex-worker communities first, they are the ones who deserve our attention the most! De-criminalizing their work and supporting them with access to HIV awareness and services will make a huge impact on our challenge to end the HIV and AIDS pandemic.
Greedy Pharma
On the other side of the huge AIDS 2024 space, shielded from the Global Village by guards who check if you have an exclusive conference badge, it seems that at every AIDS conference big Pharma devises a reason to celebrate so-called “ground-breaking news”. This time the buzz was around a miracle prevention tool called lenacapavir, a twice-yearly injectable for HIV prevention. Sounds like a perfect PrEP tool, right?
Then why is this not celebrated at the Global Village as ground-breaking news? Is it because we all have powerful stories to remind us that there are still people dying of AIDS every day? Or because we know that there are still millions people living with HIV who cannot afford HIV treatment? Or because we are concerned that there are still over one million new HIV infections each year?
Yes, and… It hurts to know that for many years we already have effective HIV treatment and that we now have PrEP as an effective way to prevent new HIV infections from happening, but we also know that big Pharma is still interested in making as much money of the HIV community as possible. Who can afford 40,000 euros (!) each year for lenacapavir? While it only costs less than 40 euros to make? No wonder we have to stand up, break the conference barrier, and shout “Shame, shame. Access for all!”
When entering AIDS 2024 you are welcomed by colourful big Pharma banners with sentences like “We won’t stop until we end HIV and AIDS”. Do you really want to end it? Then remember this; the HIV virus is not going to sleep and more people get infected and will die unnecessarily while you continue making money. AIDS 2024 is a place where you come to shine, not to pretend you care about the HIV community while you forget that without us you won’t shine at all. Don’t forget that you owe us big time, start reducing the damn price and let everyone have access to HIV treatment and prevention!
We will continue making noise until you will finally hear our cry! Please, do not let the HIV community down and take action now!
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!
I have been visiting Japan and Korea over the past 5 weeks. That is why you haven’t heard from me. I would like to share my learning from those two countries. Whether I go on holidays or to conferences in other countries, I am always interested to learn the culture, the history and curious about how the local HIV community is doing and connect with them.
My curiosity is mostly on what or how they are doing to fight HIV stigma. Is there any prevention in places, are migrants being helped or do they seek any help, is there PrEP awareness and is it available to anyone, is ‘Undetectable is untransmittable’ (U=U) known to the HIV community and public and are healthcare professionals empowering patients with knowledge of U=U? All these questions always come to my mind, and I make sure I search for answers by connecting with locals’ organizations and HIV activists.
Please bear with me, this is probably the longest post ever, but it is going to be interesting, I promise!
OSAKA
My first stop was Osaka in Japan. Before my travel I connected with Daisuke Fukusho, the only Japanese person open about living with HIV so far. He connected me to an organisation based in Osaka called Dista, a community center to learn and exchange about health, HIV and other sexually transmittable conditions. It was very inspiring to see what the community does for Queer people in and around Osaka. Dista is a very safe places where volunteers and the Queer community, including people Living with HIV, come and meet up for chats, movies or drinks. You cannot know who is living with HIV, people are not open.
With Chef Niji at Dista
I really enjoyed my encouter with Niji Sabou, a Chef cook from neighbouring Kobe. He organizes the social event I visited to help people living with HIV to meet and have social contacts. As an excellent host, he prepared a Sake collection and some good food and served this to the people to generate talks in a very informal way. Niji is organising these kind of events at Dista with a little support from the Kobe Municipality. This is already such a big help to fight loneliness and create a culture of understanding. I found this such a beauiful way of how allies of the local HIV community provide help to us, thank you Niji for a memorable experience!
I noticed that at Dista, none of those we met is open about their HIV status. To me this signals that HIV stigma still has a huge impact in Japan. Even for leaflets on U=U they would still use a modeling agency to find beautiful models to help them in the campaign. And while inform on PrEP is available through a beautiful leaflet, it still focuses on Men having Sex with Men (MSM), women are not yet mentioned. PrEP as an effective prevention approach has not yet been brought to scale; There is only one specific doctor who deals with the PrEP users, the Japanese government is still in the approval stage on PrEp. So in reality PrEP is still only used by people who can afford it and dare to approach the doctor for an appointment.
When I asked about how migrants are part of HIV prevention and how they reach organisations such as Dista, I was actually told that there are still a lot of issues to connect to them such as language barriers, affordability of PrEP and HIV care, etc. Still a lot of fights to win! The good thing is that by only talking to my new friends at Dista, where they confirmed they have never really considered engaging with the migrant community and that they found this a good idea, I do believe I have planted that first seed of the importance of reaching out the migrants as well as increasing PrEP awareness. Thanks you for your hospitality Dista!
TOKYO
The week after I was in Tokyo where I finally meet my comrade in fighting HIV stigma in Japan. Daisuke invited me to Akta, another community center. From here Daisuke does most of his HIV activism. I guess there is an advantage in being open about his status as he can then connect with the local and global HIV community.
My curiosity of how things are organised at Akta was the same as in Osaka. Here also, overcoming HIV Stigma is a major obstacle as there are virtually no people that want to open up about their HIV status. When I asked Daisuke what his drive is, he responded “To keep on fighting HIV stigma, I was encouraged by you”. I felt very honoured and proud to see how what I stand for, fighting HIV stigma, got me to connect with such a strong and motivated activist on the other side of the world!
At Akta, Tokyo, with Daisuke
I had so many questions when we started our discussion on how the Akta community centers work. They agreed that HIV stigma is there and they still do not yet have a proper way to fight it since everyone is still in the closet. Also, a lot of the materials I got in Osaka is there and more, like folders with beautiful anime which they use for their campaigns. When it comes to U=U, the materials mostly target MSM. And again on none of the materials people Living with HIV are featured. This is a real set-back as I believe a message on HIV stigma and prevention becomes so much more powerful if PLHIV such as Daisuke could feature in it instead of hired models. As in Osaka, women are not yet in the picture when it comes to HIV stigma and prevention, despite the great will of organisations such as Akta.
Daisuke confirmed that the government is not yet ready to scale through more open campaigns on important prevention programmes around U=U and PrEP. I mentioned to Akta that without this mix of stigma reduction, U=U and PrEP, we can forget about ending HIV and AIDS in 2030. I also shared with them some initiatives on tackling HIV stigma, for example Stories of hope, and how Eric the Dragking raises awareness on PrEP diversity. We conclude that it’s up to us to bring the change in our HIV community, and that without ending HIV stigma there is no ending HIV and AIDS. They are going to work hard to bring these changes. I am proud to be their inspiration and enjoyed Akta’s wonderful reception a lot!
Korea is a vibrant country! Staying in Busan and magical Jeju island before heading to Seoul, gave me an opportunity to switch from my beautiful Japan experience to soaking in Korean culture, food, nature, and social events. And it also helped me to practice to learn a little more Korean before meeting the Seoul HIV community. And just like in Japan, being able to speak a few words, make a little joke in the local language, really helped me to break the ice and light up the room.
My first day in Seoul was already very special as I arrived on the 1st of june which was the day the Gay Pride was organised. Despite some resistance from Seoul authorities, the queer community did manage to organise a beautiful parade and invite a lot of organisation to show what they are doing within the Queer community. While there were some organisations focusing on HIV, mainly around testing and condom use, none of the 60+ booths had information on PrEP available. That was quite an eye opener to me.
Before even traveling to Korea, I already connected with the amazing Jay who is a HIV activist and also an artist and singer. For him it was very important that once in Seoul for me to try and meet many HIV activists and Korean HIV organizations. So through him I got to know Tari. My first encounter in Seoul with Tari was at a Queer community party which was part of Seoul’s Pride celebrations. And this was a very unique party organised by ChinguSai (Korean Gay Men’s Human Rights Group) who really made a legendary effort to organise a queer party open to all genders. I decided to introduce Eric the Dragking here and we had a truly amazing evening.
Proudly posing with the SHARE team
A few days later I met Tari again, together with her colleague Na Young, at SHARE “Center for Sexual right And Reproductive JusticE” where I was invited to share work experiences between our organisations. I noticed that we had so many priorities in common; Fighting HIV stigma, discrimination and criminalization, education on HIV and Prevention and fighting HIV injustice. SHARE is very committed to sexual reproductive health, health-related reseach, training and education on sexual right, and supporting women and girls on abortion.
In the end we had a lot of fruitful discussions on how the local HIV community can be empowered to lead. They stressed the need for the Korean government to change their strategies and discuss with grassroots organisations working on health and HIV about what they need and help them to break the inequality that exist between women and men. SHARE also particularly supports sex workers to seeking their right to do their work. Especially this part of the key population are being criminalized and put in harm because of their work. I agreed that this is similar to what I have seen in Burundi where sexworkers are often underprivileged. In solidarity I shared a supportive video message of courage and to cheer up the Sexworkers who are being forced to be removed by local government.
A highlight of my time in Seoul was a joint meeting with five organisations, including SHARE, Chingusai, Haengseongin which is a Solidarity group for LGBT Human Rights of Korea, Action-al which is a HIV /AIDS Human Rights organisation, and KNP+ Korean Network of People Living with HIV and AIDS.
Sharing my HIV life joruney with the Korean HIV community
First of all, I was able to share my HIV journey with those organisations and some keys messages on how we fight HIV stigma, work on HIV and ageing and contribute to PrEP awareness . I am very grateful that I was allowed to share my experiences! To the different organisations I had the same question related to PrEP and, similar to Japan, since the government is still in the approval process for PrEP to be known as a public health tool to prevent HIV, right now PrEP is only given to partners of people living with HIV. I shared with them that this breaks my heart as PrEP is not needed if a partner living with HIV is undetectable. To me this shows so much how U=U and PrEP access as important tools and stigma destroyers are still not being used effectively.
I wonder, how long are U=U and PrEP access going to be unused? Why governments and healthcare providers cannot make progress on this and start sharing this important message? There will not be zero new HIV cases by 2030 without U=U and PrEP!
At end of our meeting, I was excited to learn who I could meet again in Munich at AIDS2024. I was shocked to learn that none of these 5 organisations, like the 2 I visited in Japan, will be present there! I know from my experiences that going to these type of events as an activist and member of the HIV community is a great opportunity to meet others activists, share experiences, inspire eachother, and advocate for our priorities. It is such a pity that these type of organisations will not be there, they are the real community voices! What does ‘let communities lead’ really mean if they are not invited to the global stage, if they don’t even know about AIDS2024?
Well, let me tell you, it means we are not doing enough! Do big organisations like IAS really not have the capacity to make sure grasroots organisations from Korea and Japan are also connected to the global stage? Is there really no way in this highly connected world to at least inform them and organisations such as BAWA in Burundi about AIDS2024 so they also have an opportunity to share the tremendous (mostly voluntary) work they do? That is really shameful. For me it means that ‘let communities lead’ is just a hollow phrase if these organisations are excluded. How can we shamelessly think that we are going to end HIV and AIDS in 2030 while there are so many of us in the HIV community that cannot access the latest trends or share their experiences, and worse, don’t even know global patforms such as AIDS2024 exist? Support them now in their journey to end HIV and AIDS!
The talk of ending HIV and AIDS has been going for ages, are we really going to end HIV and AIDS by 2030? To answer this question, we must ask ourselves what actions do we take in our HIV community to put people first? And more importantly, are we making sure to put women in charge?
There is always this inequality. We point it out, we are all aware of it, but concrete actions are hardly noticed. It seems that women are always the last to be thought about while their vulnerability around HIV is so visible. Yet, often we remain silent, indifferent. When will women be saved from this suffering of inequality? When will they not only be spoken about but also put in charge of addressing their challenges related to HIV and AIDS?
This January I am in my home country, Burundi, and my heart is broken when I talk to women in the communities. For example when I talk to a mother with child abandoned by the father, homeless women with children, or young girls begging on the street. Many of these women have no means or support network to take care of themselves and their children.
Put women in charge of HIV response!
Some women resort to becoming a sex worker. This is not without danger, many of them are still sleeping on the streets and through their profession or whilst living on the streets there is a high chance of them being raped. Some told me that happens at least 3 times per week!
The rights of these women are being violated and need to be supported. No wonder it makes me angry when we shamelessly announce we want to end HIV and AIDS in 2030 while basic rights and needs of these women are not even met yet, or when there is no plan of making PrEP available as a preventive strategy to help these women to protect themselves from HIV. Where are our HIV allies when we need them most?
This month my focus is to initiate the strengthening of community-based groups working with vulnerable women to increase their awareness about health & HIV services and PrEP as a life-saving measure for HIV prevention and stigma reduction.
To make a lasting impact we must work directly with local actors, so I have teamed up with a local organisation called BAWA (Burundian Association for Women in Action). The first thing we did was to make sure we listen. We must understand the societal challenges the women face on a daily basis. And my goodness, they are many!
Many women reported they face domestic violence, some sex workers end up with pregnancy during their work and experience problems to register their children as sometimes they are arrested and have their IDs taken, women sleep on the streets without mosquito nets and suffer from malaria and since they are not registered they cannot get mosquito nets, some are being detained by police and taken to the countryside where they live in places without services, etc. It is very shocking. All of them came to the same conclusion, we need safety and protection!
Distributing condoms
Having talked about these challenges and how they affect their lives, we moved to listening to their ideas about how to improve their situation. And it became so apparent to me that they have really great ideas about how they can create a better future for themselves. For example, many women would wish to have access to PrEP or be able to protect themselves for example through condoms.
As BAWA works together with others to address the needs of these vulnerable women, we also organised a session together with them to interact with the women of BAWA. We discussed their strategies on how women can stay healthy & safe, and how to seek help when needed. This was also a great opportunity for me to share the latest on HIV prevention and treatment. So, I shared with them a whole range of preventive measures such as the dapivirine vaginal ring , PrEP pill or injectable PrEP. This is a part of the world where I clearly see the need for injectable PrEP as this will positively impact upon the health of vulnerable women. We were also able to make female and male condoms available, and most strongly preferred female condoms because they are a better means for them to protect themselves.
As is customary in our society, to end these fruitful sessions and collaborations in the Burundian grassroots (HIV) community we shared a great lunch together!
If we do not work with organisations such as BAWA and the vulnerable women they represent directly, ending HIV and AIDS by 2030 is an illusion! So, HIV allies pay attention, let’s make 2024 the year to get the balance right and make sure we address the challenges of women in the global South in our fight against HIV and AIDS.
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 19th European AIDS Clinicians Society (EACS) between 18-21 october in Warsaw, Poland, on the 13th 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 17th 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.
Debating at the WAVE workshop
Sharing
On the 19th 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!
HIV stigmafighter 