Today I am sharing something close to my heart: the story of my son, Rio Mutoni.
When I was diagnosed with HIV, doctors told me I couldn’t have children. But I refused to accept that. So, thanks to antiretroviral treatment, I gave birth to Rio – HIV-negative, healthy, and full of life. He became my reason to fight against this virus and my proof that love and determination can overcome stigma and fear. I raised Rio with care and he grew up to become an amazing young man.
From the age of two, Rio was obsessed with trains. It started with Thomas the Tank Engine and quickly grew into a passion for real trains. He built train tracks out of domino stones and shoes, watched train movies on YouTube, and declared, “Mama, when I grow up, I will be a train driver”. Already in primary school at the age of five, when he had to mention his dream in a school book, he asked me to write down train driver. As we use public transport a lot, whenever we would use a train he would be very happy and paying a lot of attention to every move the trains would make. On his fifth birthday he wanted to visit the train museum and he could already experience a life size train simulation. His whole life he dedicated his passion for trains. His dream never wavered.
As parents we supported him in every way: train simulators, cameras for trainspotting, trips to train museums. His knowledge amazed us. At age nine, he navigated the London Underground better than most adults. And finally, at 19, after two years of vocational training, Rio graduated in July and was hired immediately by the National Railway as a professional train driver. He started driving trains on the first of September, and on the 25th he received his formal course diploma. Of course we were there to celebrate this precious moment with him
His dream came true and we are so proud to have supported him to realise this since a young age.
To parents: learn to understand your child at an early age and support their dreams, not your expectations. Let them be who they are, not who you want them to be. Every child is born unique. Realising their happiness and dreams should be our priority.
To mothers living with HIV: never doubt your strength. You know the connection you had with your baby inside your womb, that love will continue to grow and will motivate you to support your baby. Our love is powerful. Our children are brilliant. We are proudly HIV-positive moms and we thrive.
Rio was born after my diagnosis. I am glad we have been able to do this for our son Rio, and the results certainly paid off. In return for supporting him, he helped me win my battle with HIV. And now, he’s driving trains across the Netherlands, living his dream. I couldn’t be prouder.
Rio, congratulations on realising your dream to become a train driver. You are proof that love and belief in yourself can move mountains.
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, 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.
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?
Work with us to THRIVE!
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!
My lovely people, have I already told you how glad I am to be open about my status? I get to know more and more fabulous people in our HIV community wherever I go. And I love the way my HIV community keeps on growing. When we fight HIV stigma we need as many allies as possible.
In January this year I got in touch with a photographer from Dublin, Steven Doyle. He is not HIV positive, but he was a nurse in Romania during the height of AIDS epidemic in the 90’s where he worked with many children living with HIV and AIDS abandoned by their parents. Steven was taking care of them in hospitals and even adopted one of them, Nicu.
My HIV ally Steven
Eventually Nicu died at the age of 27. Ever since Steven’s work in Romania, he is vigorously fighting HIV stigma and discrimination through his activism and photography. His story moved me and we have so many things in common, see for example my story on HIV medication exchange for people living with HIV in Romania.
Inspired by Steven’s story I decided to join his project where he is collecting stories and portraits of people living with HIV all over the World. I consider Steven my newest HIV STIGMA family member.
So, in May Steven invited me and my husband for the photo exhibition in Dublin, Ireland. I was very excited and also curious to get to know the other HIV models. And I found that at least 3 of them are my EATG colleagues, what a small World!
In Ireland I was able to connect with new people like wonderful Gerald, who introduced me to the big HIV network in Ireland, for example HIV Ireland. One day he also showed us around in his family’s magical garden where he told us so many stories about edible and medicinal plants, what an experience! He showed us the beautiful Kildare Cathedral where I learned much about Saint Brigid of Kildare, a very important Irish Female Saint. Gerald is truly doing a lot for the HIV community in Ireland.
Enjoying the photo exhibition with Gerry
And then came the surprise invitation of Robbie and the Fabulous Drag Queen Veda Lady who are the hosts of the Poz vibe Podcast for people living with HIV, their friends, family and allies. There I also met Jordie, and my ally Steven was also part of the podcast. While all our stories are unique and inspiring, we are all connected by beating our common enemy “HIV STIGMA”. We shared many tears and laughter that afternoon. Overall, through our common experiences we realised that we are heading into the right direction and that our efforts are not in vain. Talking about HIV openly is definitely the right way to normalise HIV.
Veda Lady and Robbie
Yet, I would like to say one word of caution as, to me, the migrant HIV community is still not vocal enough, whether in Ireland or my own country the Netherlands. So I do hope my and other stories will keep on inspiring them to join us.
I would like to thank Steven for introducing me to my allies in Ireland and helping the HIV community to share our stories through our beautiful faces. Also hugs and kisses to Veda Lady and Robbie Lawlor for working so hard to make sure the positive voices of people living with HIV are being heard by the World. And Jordi, thank you so much for inspiring the young and queer world to living a fabulous positive life. Last but not least, I am thanking generous Gerald for his contribution to HIV Stigmafighter’s work in Burundi!
Let us keep up the good work, the world needs more people like us. Feel welcome to join our battle because HIV STIGMA MUST FALL!
HIV stigmafighter 