UNAIDS – HIV stigmafighter

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

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.

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.

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!

Peace,

Eliane