PrEP – Page 2 – HIV stigmafighter

The journey to end HIV and AIDS

21 June 202410 February 2025hivstigmafighter

My lovely people, how have you been?

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.

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!

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!

Thanks to Teddy who helped us with translation!

SEOUL

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.

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!

Peace,

Eliane

Put women first!

26 January 202410 February 2025hivstigmafighter

My lovely people,

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.

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!

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.

Peace, Eliane

Positive power

27 October 202310 February 2025hivstigmafighter

My lovely people,

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

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

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

Speaking out

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

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

Debating

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

Sharing

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

EACS Community Corner. Photo credit: Steven Doyle

Coaching

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

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

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

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

Thank you sister, peace in heaven,

Eliane

Can we be brave together?

25 August 202310 February 2025hivstigmafighter

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

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

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

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

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

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

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

Can we all be Brave together?

Peace,

Eliane

Dragtivism

28 April 202316 July 2026hivstigmafighter

Hello my lovely people.

It’s always a pleasure to share with you the stories that inspired you and the World. This time we are going to talk about Drag. While a lot of you may have heard of drag and drag queens as performance arts, many of you may not yet be familiar with drag kings.

I am proudly part of a family called the House of Løst Bois, the first house of Drag KINGS in the Netherlands based in Amsterdam. With our lovely Mother Taka Taka and Father Julius. Everybody has a reason to do drag. In fact, my passion for drag has been there the whole of my life, but I just did not give it a name. When I was little, I already liked dressing up like a boy and play ‘boys games’, fishing in the Ninga river, go birds hunting or climbing trees. I am so grateful that my parents understood me and did the best to allow me who I wanted to be.

Why am I Eric TheDragKing? When I was 5 I was crying a lot telling my mother “I don’t want to be a girl!” One day my mum was tired of my cries and she said “OK, you are now a boy and your name is Eric”. From that day on I was so happy for people to call me Eric instead Eliane, allowing me to be myself as a kid.

Then, at high school I joined a theather group of drummers and dancers which is traditionally performed by men in Burundi. I was the only girl in the group. So, one day when we were on the stage performing, the MC publicly announced that between the boys performing there was also a girl between them! And I was dressed up, had a great haircut and dancing so well that the audience was not able to spot me amongst the boys! For me what really mattered was to be myself and show that a girl is as talented as a man if they are given a chance!

So, now I am Eric TheDragKing, the king who lives with HIV. As I have experienced and seen many times what stigma does, I dance HIV and AIDS stigma away to inspire and empower whoever living with HIV and not open about it. Living healthy and embrace who we are is much stronger than the tiny virus. To perform drag is another powerful way for me to fight stigma and discrimination, and bring change to people and communities.

This month I was part of an event called Becoming: Drag, organized at Likeminds in collaboration with the House of Hopelezz and the House of Løst Bois . If you suffer from queerphobia, this was not right place to be. The queer world is where everyone feels at home. We felt a big sense of community connecting to the audience via our performances. It was a very inspiring evening where the audience was also part of the performance, dressed up in glitter, colourful hair and beautiful dresses. It was all fabulous! Please have a look at the pictures made by Kiriacademy.

I loved the talk show between our Mother Taka Taka, Father Julius and Mother Jennifer Hopelezz about drag values and how drag can be used as activism in many ways, for example as a form of protest or for prevention, for example on PrEP. Hence the word Dragtivism!

Yes, Eric TheDragKing is a Dragtivist! To dance HIV and AIDS stigma away as a drag king is another powerful way to communicate with people facing HIV stigma and discrimination. I know in many communities we have people living with HIV going through a lot and still trying to deal with this alone, so if I am able to reach an even a wider community, through my drag art, this would be a great result toward reaching a HIV stigma free world!

I am proud to be the first Dragking open about my HIV status in the Netherlands, in Burundi and the whole of Africa. I am grateful for the opportunity to be part of the drag community and that a performance such as Becoming: Drag provides me with a platfom to fight stigma and discrimination.

In the end what brings us together is connectedness through drag as art. To perform our art for you to enjoy we feel stronger together as one big family. I truly believe the beautiful art of drag is a way to express ourselves, to share our passion, and to come togeher as a community. What an incredible evening!

Peace,

Eliane

Meet the performers from the House of Hopelezz and the House of Lost Bois

PrEP diversity

24 February 20238 March 2025hivstigmafighter

My lovely people, today I want to share my opinion on PrEP( Pre Exposure Prophylaxis). I know that PrEP is a pill that prevents a person from getting HIV infection. PrEP is scientificaly proven to be effective for women.

How are we doing in the Netherlands when it comes to PrEP? Are we being inclusive? Recently I wrote something on instagram about PrEP for women, and after that a woman with a migrant background appoached me and said ”I am not a sexworker, but I like to enjoy having sex with men but I am afraid of getting HIV because we don’t always use condoms. I was denied PrEP and the medical person told me that I don’t fit the criteria of the risk group“.

Since when the HIV virus has criteria? It seems to me that the HIV virus wins all the trophies when it comes to diversity! HIV does not care about gender, sexual orientation or ethnic background. So if PrEP is designed to prevent against HIV, then women should have equitable access to PrEP. Women have a right to protect themselves against HIV just like others that are now able to access PrEP right now!

How can we dream of ending HIV and AIDS with proven solutions by 2030 when women, especially those with a migrant background, are still ignored in Prevention programs? Should we not focus on making good our promises to end HIV/ AIDS by 2030 and urgently include women in PrEP programmes right now?!

Migrants, thanks to Aidsmap I recently read an insightful article on why migrant women of African origin are not being targeted by health professionals in PreP programmes whilst they represent over a third of new HIV diagnoses in Belgium in 2020. Cultural differences? Lack of knowledge? Not being ready?

How can health professionals use such discriminatory language? If you generalize a problem and consider cultural diversity an obstacle instead of embracing it, then there is no way we will get rid of HIV and AIDS by 2030!

We must acknowledge that PrEP for all is a powerful pathway towards an HIV and AIDS free World. Instead of sticking our heads in the sand pretending that getting to zero new HIV infections is possible whilst still excluding people with a migrant background, let us bring proven solutions such as PreP to the people that need it most!

Celebrating diversity and ensuring access to PrEP for migrant communities belong together. In a world where our migrant community is growing, with every day new arrivals from many parts of Africa and Asia and places such as Ukraine, we must make a priority to include them in HIV prevention.

Please listen to the needs of migrant women and make sure to prioritize them, so they will be part of the winning team in our fight to end HIV and AIDS.

Change must start Now, PrEP for Women Now!

Peace ,

Eliane