hivstigmafighter

PrEP diversity

24 February 202324 February 2023hivstigmafighter

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

Golden goal

27 January 202326 January 2023hivstigmafighter

My lovely people , January is my favourite month. Not only because it is the beginning of a New year where we can start afresh, we also still have the whole year ahead to work on whatever we set our mind to.

We definitely started afresh as on the 4^th January we celebrated our 20^th Anniversary in a very special way. It became a great day full of many surprises. Remember, I was back from Burundi where I had been working really hard for 3 months on various great projects. So of course, I made sure to be back on time in the Netherlands to be with my husband on our 20^th anniversary.

He is such a romantic man, as he had planned some wonderful surprises for our special day. He took me to our favourite town, Rotterdam, where we stayed in an amazing hotel with a room with our own private jacuzzi and sauna! Then we went to a special place, a huge red heart along a canal in Rotterdam, where love couples lock in their commitment to each other. So on our wedding day (04/01/2023) we locked in our 20years and committed to staying strong for another 20 years.

And some of you may remember that it is only two years ago when I started to work hard on a Healthy New Me and that my goal was to wear my wedding dress on our 20th wedding anniversary? To accomplish this I started to walk at least 10 km every day. Well, I am so proud to share with you that I reached my goal! The dress fit me perfectly. I am calling this my Golden goal!

So, what is my next big motivation? Still this month I was invited by Positive Now and HIV Ireland to the 4^th National HIV Conference in Dublin, Ireland. The theme was “The Pillars of Wellbeing” and the first speaker was Prof. Paddy Mallon to update us on key topics related to HIV in 2023 and explain where we are and what we need to know. He explained about the HIV lifecycle and presented an update on injectable HIV medication. In the Netherlands we are a bit advanced on this topic as we already have people using this, so I could share some of the experiences from our community with the Irish HIV community. To the Irish participants he asked for more people to participate in clinical trials.

The second part of conference was focused on Wellbeing. This involved topics such as how to improve our wellbeing, how do mindfulness and meditation, how to break a bad habit and apply a new habit. My favourite exercise was the ‘domino effect’ where we learned how by starting to change something small you will be able to end up reaching your bigger target. We were also asked to write down our goals for 2023.

So after a successful 2022 where more a ‘ healthy new me’ resulted in more fitness, weight control and even less medication intake (you see, A small domino can really knock over a bigger one!), what is my golden goal for 2023 and beyond? Positive Living!

I really want to keep my healthy new me lifestyle, and also to fiercely engage on HIV activism as a performer.

I would like to thank PositiveNow and HIV Ireland and every person I managed to chat with in Ireland. Thanks to joining conferences and networks like this I am motivated to continue to be healthy and in Love for the next 20years, and by the time I will be 66 years I want my wedding dress to fit me again!

I am so excited! Isn’t this what I should call Positive Living?

Peace,

Eliane

Equalize!

6 December 20226 December 2022hivstigmafighter

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

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

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

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

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

Here is an impression of the day:

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

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

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

Inyambo voices shared their recently released song on fighting HIV stigma

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

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

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

Together we can!

Peace,

Eliane.

Children are the future

4 November 2022hivstigmafighter

After five years absence, this year I was finally able to visit my Motherland Burundi again. My big dream was to rejoin the school children, parents and teachers in my village Murira, part of the commune of Gihanga . I really wanted to check how the primary school children are doing as during my last visit in 2017 I realized that many of them were following lessons sitting on the floor.

While back then I was able to find a temporary solution to do a quick repair of as many school benches to have less kids sitting on the floor, the work was from finished. So that visit was the start of dignity at Schools as every child has a right to quality education! Making sure school children have access to proper means such as school benches is part of that!

This year, thanks to my partners, I was able to give a huge boost to building the capacity of the Burundian team to repair even more benches, making sure they are really sturdy to last a long time. When I arrived in Burundi, I immediately teamed up with parents, teachers and local artisans to get our work going.

While the work was on-going I asked some children how they felt to sit on the floor while they are learning and they were quick to reply ”I get back aches, and after a day my knees and neck hurt very much”, “I have trouble to concentrate” and “I cannot write well because I am using my knees as a table”. I also asked about their dreams, why they are studying hard, so Kessia told me that her dream is to become a doctor, Fanny wants to be a singer while Chris wants to become a model. But how can they make their dream come true when they are learning in such poor conditions? Every child has a right to education, they should not sit on the floor!

In Burundi they call young Children “Burundi Bw’ejo” which means “ Burundi of tomorrow”. We all know how important good education is for children, they are our future. So we better act very fast! And that is what we did. Together with our local team we worked very hard for the children of Murira these past weeks and yesterday the moment arrived to finish our first 50 schools benches to help at least primary school children in Murira to attend their school in dignity.

I was so proud to see the kids’ warm smiles and joy when they received the benches. So, while we are celebrating this success, there is so much more work to do since there are still more classes without chairs and my dream is that each primary school kid in the whole of Gihanga should be able to follow education in comfort.

While we are nearing the end of 2022, I am very confident that the Gihanga team will continue to work very hard for their “ Burundi of tomorrow” beyond this year as well. They have really shown me that they are able to do so much more, so if their story inspires you to help them out, feel free to get in touch with me!

I feel so proud of the people of Gihanga to care for their children and I want to thank everyone who supported them, wherever you are in the World. Together we are bringing positive change for the Future Generation, Burundi Bw’Ejo.

Peace,

Eliane

Unity

18 September 202218 September 2022hivstigmafighter

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

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

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

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

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

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

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

Peace ,

Eliane

Share talent, break HIV stigma

24 August 202225 August 2022hivstigmafighter

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

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

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

Panel member of the Indigenous pre-conference

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

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

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

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

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

Interacting with global delegates during the 3 days exhibition

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

Eric the Drag King at No pants, no problem

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

Share talent, break HIV stigma!

Peace,

Eliane

Ambassador of Hope

18 July 202225 August 2022hivstigmafighter

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

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

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

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

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

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

Celebrate life

27 June 202225 August 2022hivstigmafighter

Hivstigmafighter ally Princess Mabel van Oranje

This weekend I was invited by Brandon O’Dell, director of the Amsterdam Dinner Foundation to celebrate 30 (!) years of support to the HIV community. And what a fantastic evening I had, together with the other 1,100 people supporting our common cause, to realise a world without HIV and AIDS.

Celebrating Life with people from different backgrounds is always very inspiring. I was happy to see so many Dutch celebrities that support us; Humberto Tan who also received the Amsterdam Dinner award in his fight against HIV stigma, Amsterdam’s Mayor Femke Halsema, my Stigmafighter ally Princess Mabel van Oranje who is a long time supporter of the HIV community, and many others.

During the event I also met our Ambassador of Hope Adam Castillejo, the London Patient, once again. We discussed a lot that evening and I am proud we will continue inspiring our HIV community. We have so many ideas and plans, I can’t wait to work on them together.

As this was a special edition, I was very honoured when asked to explain about what makes the Amsterdam Dinner Foundation so unique in a short video message directed at the audience. I was very pleased to highlight the Foundation’s role in connecting vulnerable people from the HIV community to people with a heart of gold willing to share whatever they can. I also brought a more serious message because, while we are doing ever better when it comes to HIV treatment, it is a shame that many people living with HIV and AIDS are still facing stigma. As HIV stigmafighter, this was my call for action: “Everybody present in this event, stand up against HIV stigma. We, people living with HIV, cannot win the battle without your help!” From what I saw, many people were touched by these words and I am glad my message is reaching more people. Just like for example my contribution to the Pozvibe podcast earlier this month.

In the end, the Amsterdam Dinner is also about making more possible ‘on the ground’. So, three important projects were highlighted. To make sure we continue our search for a HIV cure, to support the Aidsfonds in maintaining an emergency fund for Ukraine, and to support vulnerable children in Kenya who lost their parents due to AIDS. Together, the people present at the event raised a stunning 1.27M Euros. What a way to demonstrate my remark on the importance of connectness!

For me, a very touching part of the evening came when Roel Veltmeijer who is living with HIV for 5 years and chair of the board of the Amsterdam Dinner Foundation, shared his personal story how HIV stigma impacted his own life. This was followed by a heartbreaking video story of a young Ukranian girl born with HIV who also shared her many challenges since war broke out in Ukraine. All so emotional and really made me cry. So much work still to be done!

Luckily our spirits were lifted by the famous Eurovison songfestival winners of 2022, Kalush, and another winner, Duncan Laurence.

Amsterdam Dinner Foundation, I cannot thank you enough for the remarkable work you have done over the past 30 years. Do continue this great work for as long as it is needed and let us work together to realise our common dream to live in a World free of HIV and AIDS.

Peace,

Eliane

One big HIV family

27 May 202226 January 2023hivstigmafighter

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.

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.

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!

Peace,

Eliane

Going global at AIDS2022

9 May 20228 May 2022hivstigmafighter

We proudly announce that Stories of Hope will be part of the Global Village at AIDS2022 in Montreal, Canada, which will be held between 29 July and 02 August 2022.

So, nearly one year after our launch, succesfully collecting and showcasing the stories of 11 Heroes and distributing exclusive Stories of Hope postcards through various healthcare providers in the Netherlands, Stories of Hope will go global!

At the Global Village we will:

Showcase three original portraits of our Heroes of Hope, and share the Stories of Hope concept with the wider HIV/ AIDS community
Share sample health cards with Global Village visitors and discuss roll-out of more versions in other countries
Organise rapid story telling workshops to record more inspiring stories of talented People Living with HIV/ AIDS visiting the Global Village
Create new Stories of Hope to be launched during AIDS2022

If you will be visiting AIDS2022 and are interested to share your Story of Hope or want to learn more about how you can contribute to reducing HIV stigma in your country, get in touch!