In the first of a two-part series, Positive Life NSW and GNP+, the Global Network for and by People Living with HIV, got together over Zoom to discuss a range of topics related to people living with HIV.
The co-directors of GNP+, Sbongile Nkosi and Gerard van Mourik and Positive Life NSW’s CEO, Jane Costello and Deputy CEO, Neil Fraser discussed the role and value of the peer voice, and the challenges of the current competing agendas of HIV and COVID-19. In December’s edition, we talk about our shared experiences of HIV as a rights-based movement, and reflect on World AIDS Day as a global occasion, and how we can continue maintaining the relevance today.
GNP+ is a network of interconnected individuals and organisations working to support national and regional networks of people living with HIV to improve access to quality HIV prevention, treatment, care and support services. Sbongile is based in Cape Town and Gerard in Amsterdam.
Positive Life NSW’s CEO, Jane Costello and Deputy CEO, Neil Fraser, based in Sydney Australia lead the peer-led and run representative organisation of the largest body of people living with HIV in Australia based in NSW, to eliminate prejudice, isolation, stigma and discrimination and advocate for the optimum well-being, care and support for people living with HIV/AIDS, our partners, family members and significant others.
With the 1994 signing of The Greater Involvement of People Living with HIV/ AIDS (GIPA) Declaration based on The Denver Principles, it quickly become apparent that this involvement must also be meaningful (MIPA), so the voice of people living with HIV would be and remain central across all domains of HIV policy, funding, services, advocacy and research.
As we reflected on the role of peer-led agencies in today’s world along with the value of the peer voice together, Sbongile highlighted the continuing global conversations around the GIPA principle,
“specifically in countries around sub-Saharan Africa. When you look at the history of HIV, it was the people living with HIV that fought governments, that pushed governments to make sure it becomes a health priority. What you start seeing is the networks saying, we know the solutions, we know what the issues are, we are doing the work on the ground. If you look at it from a global perspective, we and other global networks have been pushing for greater involvement in those processes. We’re seeing a lot of networks saying we want the GIPA principles to apply in every aspect of the strategies.”
Gerard said: “The first time I came across GNP+ was in 2000 when I was Portfolio Manager with The Global Fund. From the very start of the Global Fund, activists demanded a seat at the table, to design the fund not only for policies and strategies, but also to create the financial mechanism that it should be. That was in 2001, and I remember that gradually, GNP+ was able to claim a seat at the table. In our office in Amsterdam there’s a long corridor with photographs that illustrate the developments of GNP+ and these are photos that I always look at with great respect. I realised that despite the geographical distances and the absence of social media at that time, we were faxing and phoning and sending letters with stamps, activists were speaking out and insisting that for example, antiretroviral drugs would become available and affordable in an equal manner. So these are some thoughts I have about what is GNP+; we are a global network of country networks and regional networks in all continents, including yours.”
Neil reflected on his early realisation of the interconnectedness of the HIV community, “that blew my mind thinking about the way global networks mobilised, and it reminded me of a photo that we have with a bunch of people manning the phones, in our old office, probably late 80s, early 90s. The concept of creating this global movement, using letters and faxes, and the power that community responses had, and how effective it has been.”
Gerard highlighted particular strengths of the peer voice across two vital domains, HIV awareness and HIV stigma.
“When it comes to HIV awareness, this is where you see the impact of peer-led organisations, because in communities on the ground, the people that they listen to are their peers, it’s not anyone else. There’s still so much stigma and the only way to stop stigma is using peer-led mechanisms and frameworks of educating people on the ground. This is how from a GNP+ perspective we’ve seen it play out. We trained the network and gave them capacity on how to engage within these big structures when it comes to decision-making accountability issues. What we want to see is building solidarity within countries, because different countries have different mechanisms of peer-led organisations.”
“Sbongile touched on some of the different structures of peer-based organisations,” said Neil. “We are part of a federated structure; Positive Life NSW is the jurisdictional organisation of people living with HIV for our state, with other organisations for other states, but even in our response, we are all very different organisations. Positive Life NSW plays a big role in holding our public health officials and our researchers accountable for the work that they’re doing.”
He shared an example meeting with epidemiologists and policymakers discussing what was a preventable HIV transmission. “When they’re talking about preventable, they’re talking in the context of Australian-born or people living in Australia and thinking about how HIV is acquired overseas and brought back into Australia. A large part of our role is making sure that we’re not pathologised by public health officials. Hey, we’re people, not just statistics, we are more than just a dot on a graph. A big part of our role is making sure that the HIV response continues to have that humanist approach.”
“I find it extremely interesting to hear from you how you do advocacy and influence your government. I wonder how you influence your government to make sure that funding is not diverted? The biggest challenge facing current people living with HIV movements is not only COVID-19, it’s also complacency with global health. The idea that the battle against HIV has been mostly won with better antiretroviral drugs, including PrEP, and the new status being undetectable and untransmissible. Yet communities continue to struggle with funding and capacity and resources. There are many parts of the HIV community, in parts of Africa and Asia, also among poorer, isolated communities within Europe and the US and your part of the world I believe, such as refugees and immigrants and homeless people, where these global goals have not yet been met.”
“In Australia, a lot of money and whole sections of health departments have been redeployed to work on COVID,” said Jane. “And we’re not entirely sure what is going to happen in terms of HIV funding in the future, because so much money has been diverted to the COVID response. As Sbongile was saying, COVID has exposed those inequities that existed in HIV all the time.”
“When COVID hit, there wasn’t a global perspective,” said Sbongile. “Yes, we knew that it would have an impact on HIV, but I don’t think we understood the impact it would have, particularly on those who live in marginalised communities. COVID is a big mirror on the inequalities in the world.”
“When COVID came, we thought, actually, HIV is fine, we have a handle on it,” said Sbongile. “If you look at it from a global health perspective, there’s a narrative that we must sort out COVID so that we can back get back to HIV. But we’re saying, you can’t do that. The Global Fund released a report that showed that HIV interventions have slowed down, it became harder to access health care. There were huge treatment interruptions.”
“Another thing we need to talk about is around what COVID did in terms of being locked down,” said Sbongile, “and this big reliance on digital platforms. If the epidemic continues, certain people will be left behind because the world is moving into a digitised world. Currently that’s the biggest question: how do we make sure that in 2026, we’ve made progress? We’ve set new targets: 95-95-95 and certain countries have not even reached 90-90-90.”
Neil shared an example of how COVID-19 impacted people living with HIV at a local service delivery level. “Right now we’re fighting a battle to keep a service that provides crisis accommodation for people living with HIV open. Once COVID hit, and we started to plan for emergency departments to overflow, that was one of the first services to go. They cleared out the residents in that service to create an overflow service for patients from the Intensive Care Unit. So even as blessed as we are with our HIV response here, we are definitely seeing HIV being sidelined for COVID.”
Gerard asked how COVID-19 might have impacted attitudes and efforts to focus internationally. “I think Australia has been really short-sighted in our global responsibility,” said Neil. “We have become so inward looking. I think Australia’s international response is really disappointing. In Papua New Guinea, as an example, I think there are only 60 or 65% of people having access to antiretroviral treatment. We are sitting here at 98% in New South Wales.”
“We’re not only talking about Asia-Pacific countries, and Australia’s responsibility to those countries, but we’re also talking about our Aboriginal and Torres Strait Islander populations here in Australia who are 1.6 times more likely to be diagnosed with HIV than a non-indigenous person,” said Jane. “And the same can be said for COVID-19. So we are seeing that similarity in terms of highlighting and exacerbating those inequalities.”
“There is an island mentality, fearful around opening borders. We need to really hold our institutions accountable for that ongoing impact. Sbongile raised a point of what’s happening in the Asia-Pacific. Very quickly we’re going to find ourselves left behind, unless our government starts to take a more human rights-based approach than what they are doing today. It’s also not being a good global citizen to our Pacific Island and Asian neighbours.”
Sbongile echoed these sentiments, “One of the things we are just so tired of at GNP+, of sitting down in these meetings where the political declarations don’t translate, and talking about targets, coming up with strategies, but if they don’t translate to people living with HIV accessing quality care, then we’ll still find ourselves here five years later and the inequalities are still there, right? I mean, why are we sitting in 2021, with over 57 countries still criminalising HIV? Why are we in 2021, still with Venezuela getting treatment from Haiti, and activists having to stretch themselves to actually get treatment? Our biggest fear currently is that the Global Fund might focus on COVID-19, and we say we can’t do that, we have to keep our eyes on the poor because we’re no nearer to achieving ending AIDS.”
“I think our experience in the HIV response has a valuable role to play in the ongoing global COVID response as well,” said Neil. “I see it as an opportunity for the people living with HIV to go out there and challenge our global leaders and funders to make sure that the HIV response isn’t overlooked in the COVID response and that the ongoing commitment remains to respond effectively to HIV.”
Published in Talkabout #199 October 2021