IAS – HIV stigmafighter

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.

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

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