AIDS2018: What has happened to AIDS activism? Views from eight leading activists

There is a perception that AIDS activism is largely dead, that the AIDS activists have “retired”. There is a narrative and belief among some that there is a serious and severe lack of leadership in the civil society AIDS response and that very few young leader activists have stepped up. Some say that the civil society AIDS response is “captured” by donor money and agendas, in other words the new “activists” are those who fly business class to New York, Geneva and Moscow, speak sweetly at roundtables, shout a few Amandlas and board their flights back home to their donor funded jobs. We know this is not universally true, there are many tireless warriors who fight the good fight, every single day. The world is facing many crises and activism is required for a range of issues whether global warming, cancer, cheaper and more equitable healthcare, among others. Some will argue that HIV no longer needs its own AIDS activists, that the crisis is over. Others argue that the world needs a well-organised group of AIDS activists, now more than ever before.

Spotlight put the above to a number of experienced AIDS activists. Here is what they had to say:

“After all these years fighting for HIV/AIDS, it’s clear that the larger struggle, against predatory elites, corrupt ethno-nationalists and religious zealots is our struggle too and our future depends on defeating the demagogues from Trump to Orban, from Salvini to Duterte, from Erdogan to Mnangagwa. We’ve got to link our work with these bigger fights, because while we were focusing on this disease, the world got a whole lot more dangerous and precarious for those we care about: women, people who use drugs, men who have sex with men, sex workers, people living with HIV. We have a proud history and we’ve been good at what we do: AIDS activism is one of the great social movements of the past 50 years. Yet, after all these years, I fear we’ve lost our edge. It happened in the US in the mid-1990s. ACT UP had withered and many had retreated to their own lives, or to jobs with NGOs or government agencies. We were tired of fighting. The same is happening now globally. With our success in scaling up ART, we’ve move onto different arenas—me in a university—others at WHO, in NGOs doing necessary work, focusing on the details of policy, service delivery, research, the law. But as we’ve gone inside, left the streets, fires have begun to rage outside, and we now ignore them at our peril. This is a world-historical moment—the forces of reaction are on the march across the globe. AIDS activists—past, present and future—have to find their place in this fight. Otherwise, we’re all done for.” – Gregg Gonsalves, Yale School of Public Health and previously with Treatment Action Group and Act-up.

“Long gone are the days when people were dying in the waiting room and we attended funerals every other week. The HIV epidemic was acute, brutal from people presenting too late for care because of stigma or because they did not have access to health care. Today, we no longer see bodies on the line, the funerals, the deaths, the withering bodies: thank you to ARVs being  offered in every clinic -at least in South Africa ,but certainly not in the rest of Sub-Saharan Africa.

Global HIV mortality, once on a serious decline, now plateaus at an unacceptably high level of 1 million deaths per year worldwide.

Who are these people who continue to die? The majority of them are people who have been on ARVs and have developed resistance to their medication and have not been switched to an alternative regimen or have interrupted their treatment to cope with other socio—economic priorities once they feel better.

The picture has changed radically: a slow, chronic death rate is compounded by a “responsibility reversal”: patients failing their regimen are stigmatized as ‘defaulters’ which tends to reverse responsibility towards them.

Among them, in increasing proportion are young women and so-called ‘key populations’ sometimes called ‘epidemic drivers’: people society usually tend to perceive as they ‘deserve’ HIV because they  are sex workers, take drugs, have anal sex or ‘choose’ to be transgender.

So the axis of what we need to be fighting for has shifted- and perhaps feels less urgent because it is no longer the everyday person who needs our activism, but people who are already discarded by society. Activists have been institutionalized and co-opted by an attractive (and lucrative) system where activists are engaged in discussion in a tokenistic way: they need to go back to the communities and reconnect with the ones who are stigmatized while fighting for their survival and continue the fight for adapted health systems such as outreach and welcome back services. This requires funding, something that donors no longer willingly give to civil society groups.” – Amanda Banda and Eric Goemaere, both of Médecins Sans Frontières.

“AIDS activists: It’s 2018. Time to get back to basics. It’s inevitable in activism–we have reached a moment in the AIDS crisis when our most powerful targets–governments, pharmaceutical companies, technical agencies such as WHO and UNAIDS–sound like activists, touting bold rhetoric as if it were their own. This is disorienting, but also a measure of progress. For example, some of this shifting group started in 2012 when AIDS activists successfully demanded the US government commit to doubling the pace of treatment scale up to “begin to end AIDS.” This demand capped off years of powerful campaigning to reverse deadly inaction on global AIDS by the Administration of then President Obama.

But talking about ending AIDS means politicians get to act as if this crisis is already over, when nothing could be further from the truth. And in response, there are fewer activist organizations and coalitions willing to speak the truth, prioritize bold campaigning, and confront the most powerful decision makers–no matter the outcome. This is a far cry from 20 years ago, when our social movement for global HIV treatment access was just starting, and when merely demanding global funding for lifesaving medicines was considered a radically disruptive proposition.

In 2018, with donor hypocrisy on the rise, a terrifying risk of backsliding that for some countries and communities has already begun, and too few brave activists who are willing to make decision makers uncomfortable–much less accountable–to communities at gravest risk of senseless death and suffering, we need much more radical disruption. Let’s start today.” – Asia Russell, founder member and Executive Director of HealthGAP.

“HIV, for very good reason, attracted a large amount of money across many countries, from the 1980s, but especially from the 2000s. Some of that money has been wisely used to fund the life-saving activism that spurred research into treatment, and changed policies in South Africa and elsewhere that resulted in millions of people getting onto treatment. Of course, many good activists left once the major HIV policy battles were won, and ARV therapy became so good that HIV is now a much easier disease to manage with much better outcomes. There is a residual amount of high-quality activism still left, especially by older activists who have become experts in HIV science (e.g. the work of i-Base, AIDSMap, TAG etc). Their work, for the most part, remains relevant and high-quality.

Unfortunately one of the “side-effects” of the large amounts of money poured into HIV was the development of AIDS bureaucracies across the world. With the exodus of many of the leading activists, I suspect the actions of these bureaucrats — which includes researchers, administrators and self-described activists (who often trade solely on the fact that they happen to be living with HIV) — are getting less scrutiny, and so their insidious effects may be more apparent. But these bureaucracies have been around for a long time; their awfulness or uselessness was simply swamped by the good work that was happening. Bureaucracies are often very good at raising money to produce “outputs” whose use, to be generous, is often unclear. But even in the biggest bureaucracies it is dangerous to over-simplify, because their remain people in these institutions doing good work.

I’m not sure much can be done about this. Perhaps the AIDS bureaucracies will slowly erode with the sands of time, as the money declines. The challenge will be to ensure that the people who do good work are able to continue doing so, and that enough money remains in the global fight against HIV and TB to ensure that everyone who needs treatment gets it.” – Nathan Geffen, former treasurer of the Treatment Action Campaign and author of the book ‘Debunking Delusions’.

“The question has been posed – is there still a need for AIDS activism, given the other challenges facing us globally and nationally. I believe so, but it must be relevant to the current context.

In South Africa in the 90s, people with HIV/AIDS were being deprived of so many rights that the fights were obvious and desperate – much like in the fight against apartheid. Then local, national and international activism brought affordable antiretroviral therapy (ART) despite high-level government resistance. What was once unthinkable became the norm. It seemed that the big fight had been won.

And so the activism focus shifted to monitoring ART programmes and identifying gaps in our response. Such activism has successfully impacted donors, national programmes and conference agendas, prioritising key populations, women and girls. Pepfar has launched DREAMS ($385 million) to reduce HIV infections among adolescent girls and young women in sub-Saharan Africa; the Global Fund has the HER campaign, to empower women and girls to end AIDS.

These are important initiatives, but there remains a massive blind spot in our response to the epidemic. Across Africa, men are disproportionately less likely than women to be tested, to know their HIV status and to initiate treatment. This has huge implications for their own health, and also increases their risk of transmitting HIV. My activism now draws attention to this glaring, inequitable gap in the response to HIV.” – Morna Cornell, Key South African activist in the 90s and early 2000s, University of Cape Town

“AIDS activists are urgently needed to respond to the continuing challenges of mobilizing political will, research, and resources to drastically limit ongoing HIV transmission, scale up effective prevention and treatment efforts, and conduct research for better prevention and treatment methods, a vaccine, and a cure.

It’s been about a century since HIV first made its way into humans and almost 40 years since its emergence into public consciousness. AIDS has catalysed — in most cases after far too long a delay and with unacceptably high costs in lives lost and health compromised — an extraordinary, historic, and ongoing mobilization of new forms of human solidarity, collective and direct action, and short- and long-term institution building to create resilient community and public responses to the pandemic. The HIV response led to historic changes in the ways biomedical research is conducted, regulated, and its results disseminated into practice.

New generations of activists and continuing and new investments and creative institutional, political, research, and community responses are needed to bring the epidemic under control, expand and improve currently available interventions, and generate new ones to end the pandemic. Cross-sectional and collaborative approaches are needed to expand and protect the rights and health of all people including the many populations disproportionately affected by HIV as part of broader struggles for personal dignity, human rights, public health, and social justice.” – Mark Harrington, co-founder of Treatment Action Group and influential ACT UP activist.

“I think the perception that activism is captured by donor power is real. Many activists have become survivalists and survival has become the priority, not the struggle for social Justice. Donors, governments and UN power has made many activists into actocrats, not by choice in many cases but as a survival mechanism. When activist reflect on the negative impact of this power only then they will have realised that this cosy life is only for a minute. Selling out is not an easy thing if you have a real conscience.

We have not been working towards one global agenda for a long time. AIDS has not taken a retreat and therefore we cannot afford to be on the tail of the epidemic. We need to be ahead in terms of strategy (there is no clear common agenda anymore). I agree fully that AIDS activism on its own will not be the correct path today. We can no longer afford to work in silo struggles. The #MToo movement is forcing us to lay bare the truths, connect the dots in the systematic failures to achieve social justice across struggles where A clear link is right in front of us.

We have leadership on AIDS below not above. We can no longer look for leadership in the places where we used to such as big NGO’s or social Movements. We need to build and mould the new leadership That has emerged and not only look at the AIDS Dinosaur organisations for answers all the time. In fact, all organisations who are working within the South African National AIDS Council shouldn’t be the leaders in AIDS. They have a lot of compromises they make at that table. Their organisational Survival depends on the seats they occupy and sometimes they act as gatekeepers and vectors of who must be invited or not.

We are looking at the wrong places for leadership. Leadership below has no resources and struggle with capacity, but they keep moving and making a difference. So, I agree there is a Global AIDS Activism Leadership lull, yet we have so much leadership at grassroots levels and we pay very little attention to support that Leadership.

Meanwhile some activists are surviving to keep their privileged life especially those who are too used to business class. The rest want to work, but barely have any resources.” – Vuyiseka Dubula-Majola, Director of the Africa Centre for HIV/AIDS Management and former General Secretary of the Treatment Action Campaign.

“In South Africa, 20 years ago a group of activists drew a line on the concrete steps of St George’s Cathedral. This launched the South African AIDS treatment movement which in 2007 achieved a decisive victory which today sees millions of people living long, productive lives with AIDS treatment. The movement inherited some of us from preceding social movements such as the anti-apartheid, LGBTI, land, anti-globalisation, anti-privatisation, feminist movements, etc. In turn, that struggle produced some of us who now lead or are part of broader social justice struggles on a global stage. Struggles ebb and flow and it is worrying that massive victories on the treatment access front and political will the movement generated are undermined by sustained socio-economic cultural drivers of the HIV and AIDS epidemics that see rising rates of new infections. The road ahead is as long as it was 20 years ago. In saving people’s lives, the victories of the 20 years have preserved the social capital needed to sustain the struggle that would otherwise have been decimated.

Most exciting for me to see is how some of the most compelling young people engaged in social justice struggles today cut their teeth in the HIV and AIDS movements or in spin off formations that both bred, enabled, deepened and were spun off from the movement. There are the daughters of the movement who are fronting #metoo type campaigns that are challenging social norms that entrench impunity for violence against womxn, extending the boundaries of contemporary feminisms by building intersectional struggles that are the inevitable evolution of the HIV and AIDS movement’s perhaps narrowly articulated agenda at the time. They are disrupting power and pushing against the crass corporatization of people’s struggles and asserting institutional accountability. The challenge that until we defeat the systemic roots of the HIV and AIDS crisis – hetero-normative patriarchies and capitalism is real. The seven plus million people who live with HIV in South Africa and the millions more in the world will not have access to the most effective medicines as they are discovered because profit over public health remains the driving motive of the big-pharma industry. Health care systems that are being decimated by the neoliberal choices of governments in collusion with the health industry will continue to frame the landscape of injustice and HIV and AIDS exacerbate.  The North – South, rest versus Africa divides of privilege continue. The rates of patriarchal violence and coercive social conditions will continue to drive the rise of new infections.  So, the work ahead is harder than the work 20 years ago. The energy of the current generations I see in South Africa and other parts of the world is much cause for hope. The movement is multiplying. The current generation is grappling in its own way. There are as many temptations as there were 20 years ago and the dangers of celebritising struggle and being captured by the allure of struggle bling (such as money and flying around to fancy conferences and other perks) and power is as real today. Their tactics are often different. What is undoubted is that they are there in the front lines and have taken the struggle to new frontiers. Much like it took the media and other social commentators time to understand and respect the activists and movement of 20 years ago, this “evolving movement” must be understood and acknowledged in its own right. It’s not possible for a social capital built over decades to just evaporate. Talk about a “dying” movement is narrow-minded, arrogant and flawed. It misunderstands, and distorts, the dynamics of movement organizing today and what is actually happening on the ground.” – Sipho Mthathi was a General Secretary of the Treatment Action Campaign and currently leads Oxfam in South Africa.

The question has been posed – is there still a need for AIDS activism, given the other challenges facing us globally and nationally. I believe so, but it must be relevant to the current context.

In South Africa in the 90s, people with HIV/AIDS were being deprived of so many rights that the fights were obvious and desperate – much like in the fight against apartheid. Then local, national and international activism brought affordable antiretroviral therapy (ART) despite high-level government resistance. What was once unthinkable became the norm. It seemed that the big fight had been won.

And so the activism focus shifted to monitoring ART programmes and identifying gaps in our response. Such activism has successfully impacted donors, national programmes and conference agendas, prioritising key populations, women and girls. Pepfar has launched DREAMS ($385 million) to reduce HIV infections among adolescent girls and young women in sub-Saharan Africa; the Global Fund has the HER campaign, to empower women and girls to end AIDS.

These are important initiatives, but there remains a massive blind spot in our response to the epidemic. Across Africa, men are disproportionately less likely than women to be tested, to know their HIV status and to initiate treatment. This has huge implications for their own health, and also increases their risk of transmitting HIV. My activism now draws attention to this glaring, inequitable gap in the response to HIV. – Morna Cornell, Key South African activist in the 90s and early 2000s, University of Cape Town