Health – HIV stigmafighter

When dreams come true

28 September 2025hivstigmafighter

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 25^th 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.

Peace,

Eliane

Mandela Day, Adriana’s Way – art for change

18 July 202518 July 2025hivstigmafighter

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.

Happy Mandela Day! Peace,

Eliane

LGBTQI+ health matters: A journey of advocacy and action

30 May 202518 July 2025hivstigmafighter

Dear HIV community, how have you been?

I was honoured to speak at the second European LGBTQI+ Health Conference in Brussels—a vibrant gathering of activists, healthcare professionals, researchers, community organizations, and affected individuals from across Europe. The event was filled with incredible discussions, inspiring stories, and groundbreaking initiatives. Here are some impressions, hope you like them!

Addressing stigma through community-led harm reduction initiatives

During this session, my contribution focused on broad spectrum harm reduction Initiatives in the LGBTQI+ context. I shared my personal journey overcoming HIV stigma, highlighting how our talents may transform us into community icons. As one of the initiators of local grassroots initiatives driven by migrants living with HIV, I spoke about the impact of sharing lived experiences and empowering local HIV communities. I also shared my experience as a PrEP advocate and volunteer, working with local organizations such as PrEPNu to ensure access to PrEP as an essential preventive tool.

We also heard from Ismal from AIDS Action Europe, who discussed harm reduction in the chemsex context. Their organization provides training manuals and best practice guidelines for delivering health services tailored to chemsex users. They conduct trainer workshops, facilitate knowledge exchanges, and offer grants for translations and webinars, ensuring widespread accessibility of resources.

Another inspiring initiative came from Osmely José of Accion Triangulo, who uses art and cinema as educational tools through Pride Positivo. Their film screenings actively combat stigma, and they’ve developed an innovative concept—the PAE pill—as a symbol of HIV destigmatization, based on real-life experiences of stigma in healthcare and community settings.

PrEP access & prevention strategies

One of the most crucial discussions revolved around PrEP accessibility. As a volunteer at PrEPnu, I shared our digital outreach strategies, which allow people to access services through PrEPNu’s online platform. Additionally, our outreach teams engage with the LGBTQI+ community at festivals, pride walks, workshops, parties, saunas, and health clinics, ensuring widespread awareness. Unfortunately, PrEP is currently only available at a cost (+/- 30 euros per month) in the Netherlands, which remains a significant barrier.

Other European organizations shared their approaches:

Romania: Mihai from Checkpoint ARAS who opened six PrEP checkpoints under the Checkpoint ARAS Network. These community clinics, situated within hospitals, create safe, non-intimidating environments for key populations. PrEP is also not free in Romania.
Serbia: Duga Association, an LGBTQI+ community-led organization, launched the First Checkpoint offering free HIV testing, doctor consultations, and psychological support. This effort counteracts stigma, geographic barriers, and fragmented services that often discourage people—especially those outside big cities—from seeking care. While PrEP is available in Belgrade pharmacies, it costs €43 per month, making accessibility difficult.

Do you remember the Barcelona checkpoints I visited last year? All these initiatives really create a momentum around PrEP in Europe. I sincerely hope that one day we will see these community-led checkpoints in the Netherlands as well, they are really complementary to the great work already done by PrEPNu! So let us keep fighting for PrEP diversity!

HIV dragtivism

Throughout the conference I had already been highlighting how through creative activism, including HIV dragtivism, we are able to challenge political and healthcare perceptions, pushing for inclusive policies.

Somewhat unplanned, but always ready, I was asked to perform as Eric the Dragking. So on the closing night, participants were able to experience Eric the Dragking stomping HIV stigma alongside them—a symbolic and empowering moment that energized many attendees. In fact, numerous organizations expressed enthusiasm about inviting Eric to their countries to further break HIV stigma and raise PrEP awareness!

The urgent need for global action

While UNAIDS and numerous organizations continue advocating to end HIV and AIDS by 2030, the reality remains troubling: prevention tools exist, yet communities still struggle for access due to political hurdles and greedy pharmaceutical interests. Health is a human right, yet so many LGBTQI+ individuals lack the protections they deserve. So is this target still realistic and how will we reach it? I am convinced that conferences such as these contribute by creating the much-needed space for collaboration, knowledge-sharing, and empowerment. Let’s hope the Netherlands HIV community is listening to their European neighbours!

Let’s hear a few powerful reflections I collected from fellow participants:

> “In times of increasing polarization and prejudice against LGBTQI+ people, institutions, healthcare providers, advocates, and scholars must unite to promote health for all. This conference catalyzed new efforts, bringing together passionate individuals from across Europe and beyond. Let’s work together to foster well-being for everyone!” > — Tabea Hassler, Researcher at the University of Zurich

> “It was incredible to network with so many changemakers improving LGBTQI+ health across Europe. The passion, enthusiasm, and energy of attendees were truly inspiring, and I have no doubt that real action and collaborations will emerge from this event.” > — John Gilmore, University College Dublin

> “The 2nd European Conference on LGBTIQ+ Community Health definitely brought together the best LGBTIQ+ thinkers and practitioners from across Europe at such a crucial time as this, to form new alliances, strengthen our vision, and refine our collective focus.”> —Dr Harvey Kennedy-Pitt

United, we will win this fight

The fight for health equity and LGBTQI+ rights is ongoing—but together, we are strong. Through collaboration, activism, and unwavering determination, we will dismantle barriers and demand accessible, stigma-free healthcare for all.

I urge you to have a look at the manifesto we drafted together during the conference: The manisfesto recognises that LGBTQI+ communities continue to face systemic inequalities, institutional violence, and barriers to essential healthcare. In the manifesto we state that we refuse to accept a system that neglects lived experience, silences community-based knowledge, and denies universal access to care. We demand the recognition of peer support as legitimate healthcare, PrEP access for all, the integration of LGBTQI+ realities in medical training, structural support for community health centers, and our rightful place in public health decision-making. Justice in healthcare is not optional – it’s a necessity. Stand with us. Sign the manifesto. Be part of the change!

Thanks Stephen Barris from Ex Aequo for organising this wonderful conference and looking forward to the next edition!

Let’s keep pushing forward. We are the working force, and our voices matter.

Peace,

Eliane

Women of Hope accelerating action

8 March 20258 March 2025hivstigmafighter

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!

Happy International Women’s Day! Peace,

Eliane

Healthy New Me

19 February 202120 February 2021hivstigmafighter

You may wonder why I chose this title? And why I believe this will be my 2021 slogan?

As I shared in roller coaster, as a long term diabetes survivor, I have been dealing with many health challenges alongside HIV during the difficult year 2020. Most of that year I also suffered heavy menstruation, related drops in my iron level and anemia. Because of this I could not exercise regularly, losing confidence when doing simple things like walking or cycling. Sometimes I thought I was about to have a heart attack!

So I gave up the only sport I really enjoyed before Corona came into our world. Do you know what it is? WALKING. Before these health issues I would walk 5 to 7 km daily and 15 km once per week. I liked walking, being in the nature, smelling fresh air and giving me inspiration.

I became really unhappy about my health and I started fantasizing about walking on the road again and wishing that I got rid of the extra weight gained. And on top of that, my diabetes became worse and I needed to increase my medication which was already a lot.

When they told me that I would finally be helped with my bleeding problem, I could not wait to get on the operation table to get control over my life back. Before I entered surgery on 19/11/2020, I promised myself that if I would come back safely and start walking everyday the moment I would be allowed to exercise again.

So, the day after I got the green light from the hospital, I kept my promise and started walking again. I set myself two goals: 1) Get rid of the extra diabetes tablets and 2) reduce weight so I can fit my wedding dress again. Every single day since the green light, I walked at least 10 km and I increased it to at least 15 km per day during the weekends!

Two weeks into my push to regain my health and confidence, I got my first check-up with my diabetes doctor since my surgery. She was very surprised when the results came in, asking me “What did you do to make your diabetes go down so quickly?” I said “walking 10-15 km everyday”. So she told me that I could immediately reduce the number of tablets and that if I would continue to improve, I could even take less.

I was so happy to see the immediate positive result of my hard work and that I am already on my way to achieve my first goal. I can’t wait for the day I am ready to find my wedding dress and start trying if it fits!

Achieving these positive results, makes me more motivated than ever! I am losing my weight, I am gaining more energy, my sex is great, and my husband is happy 🙂

I love the Healthy New Me, with a positive mind doing positive walks.

Peace,

Eliane