Otiato Guguyu
For over a year, the Global Network of People Living with HIV (GNP+) has been implementing organizational reforms to adapt to the goal of ending AIDS as a public health threat by 2030 and ensure a resilient and sustainable HIV response towards the ambition of HIV epidemic control.
The recent trend in reduced donor funding led by President Donald Trump sudden stop order, followed by additional budget cuts in key donor countries, including the Netherlands (-35%), France (-12%), Germany (-20%), the UK (-50%), and Belgium (-5%) has upended the global HIV response movement. The cuts have disrupted medical supply chains, dismantled local community support that was crucial in keeping millions in treatment, and dismantled the entire civil society structure. The news has been received in alarm by civil rights groups, warning of a rollback in the gains made since President George Bush launched the United States President's Emergency Plan For AIDS Relief (PEPFAR)in 2003.
GNP+ has sought to take a more adaptive route, noting that HIV emergency response always had a sunset date, giving into another season of the HIV response, which we were already falling short of. With the 2030 goal of ending AIDS as a public health threat nearing, the urgency to address the persistent gaps in the HIV response is critical now more than ever. The world must now listen to PLHIV communities on managing and ending the pandemic sustainably.
Read also: Global Network of People Living with HIV urge the world to listen, on PEPFAR transition
Last week GNP+ convened PLHIV networks to strengthen their capacity to collaborate with their governments as they adapt changes to their national HIV programs including for steps to mobilize domestic resources, integrate HIV services into primary healthcare, and safeguard prevention and community health system programs from neglect or political shifts to ensure HIV sustainability roadmaps are clear and provide an opportunity for collaboration with multi-sectoral, regional and global partners to drive innovation and investment and embed accountability mechanisms that ensure real and measurable progress.
OTIATO GUGUYU spoke to Sbongile Nkosi and Florence Anam the GNP+ co executive directors who are rising among PLHIV community as a beacon of light and leadership through the fog of crisis.
The funding for the HIV global response is in disarray after President Donald Trump issued the stop order and Europe followed suit with cuts in aid, How are you responding to this crisis?
FLO: I know everyone is treating this like it is a crisis, but this is how this sector has been meeting its needs. In 2020, we were all faced with COVID-19 and we had to quickly see how to adapt. I think for us crisis has become something that is normal, not normalised, but it was easy for countries particularly those in Africa to adapt to the sudden shift now because they already had an experience like this not far back when they were caught off guard during COVID 19, and had to go into this emergency response.
SBO: I do not like the framing of the current situation as a crisis, with a lot of commentary around the devastating impact of Aids, because it depends on where you are sitting. From a global perspective, it may be a crisis because the north has created a whole industry where people are employed and have contractual agreements with business consultancies. There's been quite a lot of that.
In Africa, there's some form of celebration in the shift because it is asking us to innovate, to build resilient systems and to really think out of the box, so there's a lot of excitement. Therefore, we have to locate where this conversation is at because there are two different narratives.
Governments, particularly in Africa, have been asking for agency in regards to institutionalizing their HIV national programs and this situation provides that opportunity. I think the conversation is the shift of what Africa and developing countries need in the form of an investment for sustainability.
It is interesting because GNP+ went through this process of finding sustainability last year, while you were restructuring you sort of modeled this situation. So what does it look like to you? This whole radical change scenario?
FLO: Generally, as an organisation that has gone through its own change, and Sbo will also say this, we are sitting here, and we go like this feels very familiar. Last year we went into an all organisation overhaul, so it wasn't just restructuring of staff, it was reorganizing our systems, reorganizing our positions, our entry point, how we want to speak, where we want to focus and prioritise, and in a nutshell, it was like coming back to purpose. PLHIV First was our purpose. HIV is the entry point of how we work or engage. We spent a lot of last year communicating this and in many cases, having to defend this position.
Getting to this clear position was not quick; we had to sit and figure out, will we (GNP+) be missed if we closed down, if not then maybe we were not needed. But if we exist, what would we be existing to do? Towards 2030, beyond 2030? When a cure is found? When we realize the Global Goals of ending AIDS as a public health threat? I think as leaders, you have to take yourself there; it's like edge of the Cliff.
For me, it feels like I'm being very frank in wanting to challenge leadership now to be bold enough to imagine their organisations not existing because that's where we must all start. Then we can figure out our value and add into the ecosystem, not the other way around, because currently we are insisting we are the actual players of the ecosystem and people must keep us here. It is not necessarily the truth. In this moment of change, all organizations must reflect deeply on their reason for existing and in what ways they must pivot to stay relevant.
Is it scary as a leader to think about your organization not being needed? Does this need a total mind shift, and new ways of thinking, considering the PLHIV leadership struggling with this period of change?
FLO: What we are saying is not new thinking. If you really talk to people, there were those thinking and saying this for a while in this sector, trying to alert us to the changing times. But it is a hard conversation; even now you can tell it's not there. It's not a popular conversation.
I remember Sbo and I having this conversation last year in January of what would be the evolution of GNP+ if we are succeeding in our mission and vision, then you need a smaller GNP+ right. If we are really ending AIDS deaths and ending new infections, if they're not the way they were ten years ago, we can't operate in the same GNP+ that operated 10 years ago and these decisions really shaped how we then got very operational in terms of implementing and reorganizing our organization. We spoke a lot about the Business of GNP+ Sbo primarily led us on the internal shift as I focused on our positioning.
SBO: I think in the short term this is about organizations really trying to find ways in which they operate outside traditional donor funding, repurposing and really thinking where do we get the financing or how do we do our work more sustainably.
For instance, if you look at GNP+, we restructured last year, and we thought we were fine, and then now we are also realizing maybe what we need to think about is short-term contracts. What does that even look like as we adapt into this new moment of not having resources? I told the team last week this is not a time to be in the sector if you're thinking of building your career. Everybody's really adapting and really this work is based on service more than careers.
Does this imply that the movement had become more of a career for some, and shifted attention from the main work?
FLO: It's been something we talk about even our own network. It's been painful for me to go to one country to ask what they are most scared about in this change and see them list a project as their priority and not the treatment. That is a problem, and it is not just them, when we were changing our GNP+ strategy, we realized 60 percent of our budget was sitting in projects for human rights. We as PLHIV have been so conditioned to dehumanise ourselves and not believe our own life-saving treatment remains the highest priority for our advocacy work. Its been a work in progress to get us all back to purpose.
Why did this shift occur, and who was driving the process away from the focus on these basics?
FLO: The HIV response has been predominantly shaped from the global North, they define the problem and design solutions with their lens. It's tokenistic half the time and this is the dynamic that has existed even with our own governments, and because the systems and everything has been created around whoever has money and power, all of us have adapted and shifted to this narrative.
In 2019, while working at MSF, we wrote a report in which countries were saying PEPFAR vertical engagement with their financial budgets was a problem since it was not sustainable. The whole of 2022-2023 governments have been saying this, African governments told Gavi, WHO, the World Bank and Global fund their funding models were inefficient and created silos. It created confusion where the same people are dealing with three or four different functions, with four different reporting mechanisms because global fund only wants to focus on HIV, TB, and malaria. Gavi wants to focus on immunization, and I don't know one or two diseases this is impractical. The Lusaka Agenda has brought this discussion forward, and I am sure that with the changes now, governments will have an opportunity to ensure realistic health systems that are resilient and can offer impactful person-centered care for its people.
How did this impact the actual work to end HIV?
FLO: I think if we were to introspect, we will see we were not doing well; we had gotten to this plateau where no matter what you invest, we were not moving ahead. We are losing 630,000 people to AIDS deaths as of 2023, among them 90,000 children, and we are getting new infections of up to 1.3 million people, among them 120,000 children. We are yet to achieve population viral suppression even with the knowledge that PLHIV who are virally suppressed cannot transmit the virus sexually to a partner. We are missing out on the benefits of Treatment as prevention.
I think we must all stop and acknowledge that we were not moving ahead; something different is needed for the last mile push to realizing the 2030 goals.
SBO: That's what this PLHIV meeting is really about that. We are shifting an entire global health system that has been based on quite a colonial way of thinking about development and growth and public health in Africa. It created a parallel supply chain and put us in a lot of confrontation with our governments. What we are saying is our governments might not have the best systems, but they need capacity, and they need help from us. How do we rethink, and how do we innovate?
So I do think that this meeting is really responding to a crisis. I think this meeting is responding to a time where Africa is now having conversations about how do we make sure we sustain ourselves, how do we make sure we build a much stronger continent. That's what this meeting is really about, and I think as GNP+ having two leaders from the continent, we are saying we would like to actually drive that conversation.
GNP+ has been at the forefront of building a response and you created these convenings, first digitally and now in-person in Nairobi. Did you foresee this network building will put you at the head of responding to this funding problem?
SBO: I did I really did, from the first day I came into those meetings, I was really inspired and I knew it was going to be big, I knew that it is now communities that are going to lead because everybody else is crying, trying to navigate the politics, but communities are continuing the work without the money, they are volunteering because they've always had to volunteer.
Each time we would visit countries and we would see the innovation which felt like it was only natural to let communities lead. I remember back in 2022, this was the same conversation then, in Montreal, where there was a call to allow communities to lead, what ahppned to that.
And as FLO was saying, the numbers were still an issue, service delivery was still an issue, stigma is a thing that they face every day, so every day they are working on these things. But because our arrogance when we sit in global meetings of thinking that communities don't have capacity, we don't even see this, we don't see the resilience that they've built.
You are also donors, as GNP+, but I noticed you allowed your networks to tweak their budgets during this this moment of change, is this something you learned from the funding challenges and incorporated in your strategy?
SBO: Surprisingly, this adaptation was not in response to this moment; it came from our restructuring last year when we did our change management process. Everyone thinks that civil society networks don't know what they're doing, and we need to come in with the money, to even hold their hands.
We felt there's something wrong here, there's a power dynamic that we have that we need to change. So one of the things we did last year was to think about how to work with our networks as a global organisation, and we realized a widespread assumption that networks don't have capacity.
So one of the things we used to fight was the Technical Support funding, and we had a huge fight with some of our donors but felt we needed to spell it out because they didn't understand when we said countries don't need Technical Support. A number of organizations even threatened to take back our funding as they insisted that we must keep this ‘technical support’ model. It became a clash of values for us, and we were willing to let the funding go.
FLO: The funding structure was really built around capacity building and Technical Support. If there is money, you must build capacity of people; whatever that means. And we found it did not make sense, looking at the quality of staff going into country X to build the capacity of the people there and the person there leading the work is a PhD with own country experience someone coming in from Geneva, Washington, NewYork, UK or Netherlands will never have. This is unrealistic and, honestly, a waste of resources. It is the very demonstration of colonialism.
We hope this moment will provide an opportunity for all players in the HIV response to rethink how we work, to promote country agency and ownership. For many of us at a global level, we need the humility to understand our role, to say we do not know if we do not and then go figure out what it is. The country colleagues have grown and do not need us to show up the way we did 10 or 5 years ago.
How would you advise donors to change their approach and models?
SBO: A lot of donors are now having to really think of what is the direction. If I was in their space I would start looking at what the investment that has already happened in countries has built, the multisectoral structure.
A lot of donors have focused so much on the only the UN donor reports and it have not looked at different conversations when making the decisions. I was shocked when FLO was telling me that there's a group of researchers who have been doing so much research, but because the way the HIV response research comes from the global North, that's not the data that has been used by everybody else.
FLO: I think it is been about language, it's been about framing the work. It's been about trust. Trusting that people at country level know what they're doing and their definition of what they need may not be what we think they need, but we have to trust that they know what they're doing. And I think those are the qualities of leadership now that you need to let go of this control that your money and power gives you to allow people to do that which they know is needed and innovation only comes out of these kinds of platforms and opportunities.
Because if we are constantly wanting to block what people can do, how will they innovate?
Lastly, there’s this poem by Rudyard Kipling, it says 'if you can keep your head when all around you are losing theirs then the world is yours. As leaders who seem to be figuring this out how do you keep your heads?
SBO: I think Flo and I are visionary leaders; we understand that the world is constantly changing and that crisis is always a part of life, and despite all this, you have to keep your eye on the ball.
Recently, there was a storm in Joburg, and I was telling FLO about the storm, and I saw us, our leadership like that. I told her how I find it weird when there's a storm, people just stop on the side of the road and I feel like you should not stop, you have to get to the end point. Your goal is to make sure you do, and in that frame of mind, you just relax, and then you start to see the storm for what it really is; see the wind and the whole thing, by just keeping your head straight and relaxed.
And then another thing is to make sure that you don't take anything personally. We are seeing this even with the new US government, there are some things that we admired in the way they are thinking about efficiency, in the way they're thinking about the national interest. So in the noise, I think we're always seeking for truth. And for me, that has been the biggest, biggest thing that made us be really quite above everybody else.
FLO: I think one thing that primarily stands out for me is the why we are doing what we are doing, and we have our why very clear, and that it is for people living with HIV. To get every person living with HIV who needs treatment on treatment and to end AIDS deaths, that's why.
This helps us to be rational even when we need to be emotional because I think leadership decisions are choices. It's not like we don't get scared. It's not like we don't worry. It's not like we don't panic. It's not like we don't feel these things. We've been called evil. And yes, we have been. You have to be evil in certain people's minds to make the tough leadership decisions needed. Clarity of purpose has been how I keep my head.
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