Lead the noise

I wanted to take this opportunity to share some 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 International AIDS Society 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 Living with HIV (ICW Global) 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!