AIDS conference exclusion is 'unjust' and 'wrong,' says UNAIDS chief

Winnie Byanyima, the executive director of UNAIDS, was on her way to the 24th International AIDS Conference in Montreal this week when attendants at the airport in Geneva almost refused to allow her to board the plane.

In a tweet Tuesday, Byanyima, who is from Uganda, wrote that she was standing at the gate with her boarding pass in hand while airport personnel repeatedly scrutinized her documents and made phone calls.

“I board last,” she wrote, calling her treatment “Unjust, racist!”

Byanyima was not the only person planning to attend the Canadian event — the first in-person International AIDS Conference since the COVID-19 pandemic began — who found their travel disrupted or blocked by visa denials, boarding problems, or other incidents that often affected people from the global south.

“I was aware that so many people, hundreds actually, have been turned away, some of them after working so hard to make their applications, to pay the fees that they have to pay in advance, to travel long distances, to line up for visas — and they were denied,” Byanyima told Devex.

These reports have cast a shadow over a major international conference aimed at reconnecting a global, inclusive movement at a pivotal moment when the fight against HIV appears to be faltering.

Devex spoke to Byanyima about how to get that fight back on track. This conversation has been edited for length and clarity.

A key message you shared today was about the need to address inequalities to get the HIV fight back on track. And yet the basic legitimacy of this conference has been called into question by the inequality in delegates' ability to attend. Does the global health community need to get its own house in order when it comes to who gets a seat at the table?

I tweeted about my experience not because I wanted to speak about myself, but because I wanted to highlight this issue. Decolonizing global health is very important to me and is important to us at UNAIDS.

The highest burden of HIV is in Africa, and that is where most of the people denied are from, but also in Asia, in Latin America, Black and brown people being denied the opportunity to come to talk about their lives, to share their experience, to learn from others. You have a conference here in the North where white people — who are also affected but not in the same way — are sitting there discussing, sharing their research, sharing all of this. This is unjust, and it is wrong.

So my tweet was really to draw attention to the fact that there is an injustice here, even though we are here. We thank the host, Canada, for hosting us. But I think we should signal this for future conferences. Host agreements should take care of this very, very seriously, making sure that whichever country agrees to host the next conference should commit to enable access to all those who want to come to the conference from the global south. I think this commitment must be very, very clear in future agreements for host countries.

This is a movement. It's an HIV movement that brings together scientists, brings together activists, policymakers, academics, faith leaders. And there is an energizing that happens here. There's a mobilization that happens here. There is a joy that people get from coming here, and this is about people's lives. These are people who are affected themselves coming — and shutting the door in their faces is just wrong.

The latest UNAIDS report describes a moment when progress against HIV is under threat. Where do you put the biggest responsibility right now to absorb the lessons of this report and do something about it?

I give credit to communities, to activists on the ground for keeping services going in these very difficult times we have been going through. At UNAIDS, we were monitoring on the ground what was happening to the HIV response in countries as the world was being devastated by COVID and now with the economic shocks from the war in Ukraine. What we saw was heroism at the grassroots.

Now, when you ask who to blame, responsibility first lies with governments themselves. They must prioritize the lives of all people.

We should be seeing governments working on the enabling environment, removing punitive laws that drive people away from services, that drive LGBT people underground, that drive sex workers underground. These are the most at risk and need to be able to access services.

The second is, of course, the international community. At a time when the developing countries, particularly the high-burden countries of Africa, are under great economic pressure, have smaller and smaller fiscal space to invest in health, education, and social protection — which are what will drive infections down and stop deaths — we should see the international community stepping up in resources. Instead, we are seeing them also stepping back.

This is not good. The donor countries shouldn't reduce the investment that they have been making in HIV. In fact, they should step in with more resources. That's what global solidarity is about.

When you look at the response to COVID-19, “global solidarity” is not the first phrase that comes to mind. Are you sure the HIV community can depend on wealthy donors stepping up in the name of solidarity?

We've learned that unless everyone can access the tools of technology — the solutions, whether vaccines or treatments — that a pandemic just lingers on and keeps growing again and hits you once again. We know this, and whether we are learning it or not, we are linked. Global solidarity isn't charity. Global solidarity is about all of us being safe.

What we have now in the global AIDS response is a result of multilateralism that worked 25 years ago; countries could come together and agree to fight together. We failed to do that for COVID. This is the state of multilateralism today. It is a sad state. But it is not an inevitable state, and it can change.

Change comes through people organizing and pushing for the change we want. I belong to movements. This is the life I know — of organizing and claiming what is right. And so that's why I'm here: to work with others, to change that, to make countries come together multilaterally and do good, to save everybody.

A lot of the necessary interventions that you’ve described relate to things like changing laws, ensuring civil rights, or upholding democratic norms. Those aren’t what we might think of as traditional “health interventions.” Is the HIV community built for those kinds of fights?

It's yes and no. In the beginning when HIV was at its peak and many people were dying, in Africa, where I come from, women got up from their houses, organized little village groups, and started working from home to home, burying the dead. They would even buy together saucepans and plates and blankets and everything and move with them from house to house, burying the dead, feeding the orphans, then go to the fields and harvest the food that's growing there because the mother and dad had died and there's no one to take the harvest.

This collectivism [emerged], and people organized. And out of that, a huge movement of women responding to those affected by HIV, and nursing patients at home, grew.

But when treatment came, then a lot of attention went to putting people on treatment, and the movement that had worked on prevention, it kind of lost energy. It was defunded, and attention was put more in treatment. Now we have to go back to lift that work again of prevention. We have to invest there.

The communities know what they need to be able to access the tools that are there. But we have to get our donors to understand that financing should not flow only to putting people on treatment. It's not enough. Poverty, stigma, discrimination, punitive laws — these things pull people away from treatment and prevent them from getting on treatment.