Open for Comments: TAS Statement on the End of AIDS

Dear CAGH Members,

The TAS Statement on the End of AIDS is looking for comments/feedback on their statement. Please send feedback by April 15, 2017 to Matthew Thomann (Matthew.Thomann@kzoo.edu), Richard Parker (rgp11@cumc.columbia.edu) or Nora Kenworthy (njk8@uw.edu). Please find the full draft below or download the Word doc here: https://drive.google.com/open?id=0B2GzTtH-fmWed09XMjZWYmJBRG8

——-
From a Global Crisis to the “End of Aids”: New Epidemics of Signification

Nora J. Kenworthy (University of Washington, Bothell), Matthew Thomann
(Kalamazoo College) and Richard G Parker (Columbia University)

Introduction

If the decade following the first Durban AIDS Conference in 2000 was marked by
discourses about an “epidemic out of control,” and a politics of emergency
that justified exceptional activism and action, the decade of AIDS responses
beginning in 2010 has been distinctly framed by declarations that an AIDS-free
generation is within our grasp, that the end of AIDS is not only possible, but
immanent, and that renewed optimism regarding an AIDS cure is justified. Crafted
in the wake of the 2008 financial crisis and honed by years of funding plateaus
and program retrenchments, the prominence of an “End of AIDS” discourse was
enshrined this past summer, first at the 2016 UNAIDS High-Level Meeting on
Ending AIDS in June, and subsequently at the International AIDS conference in
July. By the time the throngs of conference-goers were descending on Durban,
however, a forceful challenge to this discourse could be heard from academics,
activists, and commentators. Questioning the feasibility of an end to AIDS
without renewed long-term financial commitments, and highlighting the persistent
and frustrating challenges of sustaining effective treatment and prevention
programs, detractors moved to quickly unmask the appeal of this new campaign.
“Although the…strategy is carefully delineated and politically endorsed, it
is financially unsecured; and hard choices await,” writes Nana Poku (2016,
743), highlighting the urgency of a “strategic reckoning of expanding needs
and diminishing means.”
Yet triumphalist discourses about the End of AIDS show considerable durability,
particularly among the larger donors and organizations dominating the
policymaking field. In one video promotion created by Nike and (PRODUCT)RED, an
imagined end of AIDS is brought about by the purchase of goods related to
Nike’s “lace up and save lives” campaign, and a resulting storm of tweets
by celebrities and sports stars (ONE 2011). These then transform into ARVs and
fits of solidarity spreading across the globe, culminating in an imagined future
in which African schoolchildren are being taught the history of a disease that
once was, but is no longer, in existence. Though heavily commercial in its
messaging, Nike’s ad helps to expose a broader set of strikingly similar
discursive frames through which the futures of AIDS are imagined and its ends
are envisioned. These discursive frames include a focus on technological,
short-term interventions, an embrace of social media messaging and slogans as
measures of implementation, and a general avoidance of discussions about
long-term financial commitments by donors to comprehensive treatment, health
systems building, and patient-centered prevention modalities.
In this Take a Stand statement, we highlight the contested social terrain
surrounding the End of AIDS discourse by utilizing Treichler’s (1987) view of
AIDS as an “epidemic of signification.” What, we ask, does the End of AIDS
signify, and for whom? Who stands to benefit from a triumphalism that few
believe but many endorse? And most importantly, what kinds of AIDS response does
this discourse promote, and what forms of knowledge is it rooted in? As we will
argue below, the irony of this discourse is that, though intended to elicit
further commitments to the HIV/AIDS fight, it may instead elicit a complacency
among donors, who, as El-Sadr and colleagues (2014, 166) write, may perceive it
as “minimizing the challenges that remain.” It may thus provide a timely
exit strategy for donors fatigued by the long-term, hard work necessary to
feasibly make inroads against AIDS. As a result, the “End of AIDS” may
likely herald – and justify – two notable shifts in HIV policy: first, the
tapering of donor support for long-term treatment; and second, a pronounced
embrace of technical, short-term interventions–a “biomedical turn” that has
significant impacts on civil society, health systems, and the real futures of
the epidemic.

Discursive histories and the “End of AIDS” narrative

Nearly 30 years have now passed since Paula Treichler (1987) originally argued
that AIDS could be understood as “an epidemic of signification.”  She
emphasized that in AIDS, “meanings are overwhelming in their sheer volume and
often explicitly linked to extreme political agendas” (39). Precisely because
of this, she argued, “[w]e need an epidemiology of signification – a
comprehensive mapping and analysis of these multiple meanings – to form the
basis for official definition that will in turn constitute the policies,
regulations, rules, and practices that will govern our behavior for some time to
come.”  Writing from an explicitly activist perspective, she stressed that
“what AIDS signifies must be democratically determined:  we cannot afford to
let scientists or any other group of experts dismiss our meanings as
‘misconceptions’ and our alternative views as noise that interferes with the
pure processes of scientific inquiry” (39).  Now more than ever, Treichler’s
arguments ring true as we reflect critically on the discursive construction of
the “End of AIDS” narrative in recent years – and on the ways in which
this narrative has shaped policies and practices that constitute the response to
HIV mid-way through the fourth decade of the epidemic.
In examining the discursive history of the epidemic (and its relation to
material practices) over roughly the past decade, we can highlight a number of
key trends and events leading to the End of AIDS moment.  For example, just
shortly before 2007-8 financial crisis, we began to see important shifts towards
new modalities of prevention and treatment that in retrospect led to a massive
re-biomedicalization of the epidemic.  As a result of the financial crisis, a
series of important donor withdrawals marked the beginning of a shift from
“scale-up” to “scale-down” that is increasingly visible today.  In the
wake of this shift, donors’ fear of long-term treatment commitments, and of
the resource-intensive work to ensure treatment/prevention success, took form in
new discourses of sustainability, accountability, and country ownership, which
served as both prelude and justification for scale-down.  PEPFAR, and similar
agencies, redirected aid from earlier priorities (the “general” population
and treatment scale-up) towards a new set of targets (“key” populations and
biomedical prevention technologies and techniques). Simultaneously, the
financial crisis initiated a reassessment of donor commitments that would later
become visible in the failure to fully fund the Global Fund and other aid
shortages (Kates 2016).
The politics of shifting priorities and slogans in the definition of HIV
response strategies is hardly new.  It is important to remember that just prior
to the emergence of End of AIDS discourses, the so-called “AIDS Backlash”
was in full swing. Many in the global AIDS industry had become champions of
“health system strengthening” as a way of defending their funding streams
and averting attacks on scale-up as a vertical undertaking.  But it is
nonetheless striking to see how health system strengthening began to give way to
talk of Ending AIDS as we moved from the third decade of the epidemic into the
fourth.  Perhaps most vividly evident in UNAIDS’ battle to stay relevant, talk
of “crisis” shifted towards “winning the battle.”  Something resembling
what would later become the End of AIDS began to be constructed, for example, in
a 2010 UNAIDS document that first announced its 2011-2016 “getting to zero”
strategy (zero new infections, zero AIDS-related deaths and zero
discrimination).  That strategy, formally adopted by the UN General Assembly in
its 2011 UNGASS declaration, set a goal of getting to 50% (on the road to zero)
by 2015. The UNAIDS Fast Track Strategy, with the goal of 90-90-90 (90% of
people with HIV diagnosed, 90% of diagnosed people on treatment and 90% of
treated people with fully suppressed viral load) by 2020, was then issued in a
2014 UNAIDS document.  To our knowledge, this is the first explicit articulation
of the goal to end AIDS by 2030.  Finally, the 2016 UN General Assembly High
Level Meeting on Ending AIDS, held in June of this year, officially adopted the
“Political Declaration on HIV and AIDS: On the Fast-Track to Accelerate the
Fight against HIV and to End the AIDS Epidemic by 2030.”  So while the concept
of ending the epidemic began to be floated by global AIDS administrators as
early as 2010, it then took roughly five years of sloganeering and issuing lower
level UN documents to gradually get to the point where it would become an
official policy declaration adopted by the General Assembly.
Not wanting to be left out of the game, over roughly the same time period, the
US State Department also developed its own version of this goal, most clearly
articulated in Hillary Clinton’s 2011 speech (as US Secretary of State) at the
NIH, which initiated the US/PEPFAR push for “an AIDS-free generation.” This
goal quickly became the official discourse for President Obama and other US
officials, and an organizing call for the 2012 International AIDS Conference in
Washington, D.C.
The majority of other major donor agencies then began to endorse the UNAIDS Fast
Track Strategy starting in 2014.  As soon as the Fast Track Strategy was issued
(basking in the “success story” that had been told by the global scientific
community at the Melbourne AIDS conference in July of 2014), we find other major
players (the Global Fund, USAID, etc.) issuing statements that articulate “the
end of AIDS in 2030” goal, and at some level begin to turn it into a fait
accompli (at least in theory).  Private donors seemed slower, but by 2015 and
2016, we begin to have private donor buy-in (for example, people like David
Furnish made statements about it for the Elton John AIDS Foundation), and civil
society organizations rallying around the slogan (for example, UNAIDS sponsored
a large CSO meeting in Bangkok in 2015 where the clear goal was to get everyone
to sign on to the “90-90-90 by 2020” and “the end of AIDS by 2030”
goals).  Perhaps somewhat ironically, all this was happening at precisely the
same time as the elaboration of the post-2015 development goals, in which HIV
largely fell from the list of primary development concerns.

The biomedical turn and its impacts

All of these events of course develop in tandem with what might be described as
a “biomedical turn”:  an increasingly powerful biomedical triumphalism
regarding HIV treatment and prevention, whereby shorter-term, privatized,
technological, and, at least in some instances, (allegedly) more cost-effective
interventions are promoted, to the deficit of long-term support for lifetime
antiretroviral treatment.  This trend obviously moves in multiple directions at
the same time, ranging from large-scale biomedical prevention research trials
(such as the $45M iPREX studies) to the IAS Towards an HIV Cure Initiative
(championed by Françoise Barré-Sinoussi as well as many others).  But in all
of these directions, biomedical advances, in turn, become the “scientific”
justification for an End of AIDS discourse that has been articulated by public
health experts and policymakers. They play a key role in ensuring that the
biomedical community will endorse the End of AIDS story line, just as they
substantiate, with scientific validity, the feasibility of the policymakers’
claim that we really can end the epidemic by 2030.  These narratives thus become
key sources of mutual reinforcement that sustain a vision of the End of AIDS
that brings together policy-making, diplomacy, program implementation and
science in the transformation (or assemblage) of the End of AIDS narrative.
Defining what “Ending AIDS” will entail in practice has elicited a powerful
chorus of voices defending not one, but many, heavily biomedical programmatic
initiatives: from treatment as prevention (TasP) and test and treat initiatives,
to pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), to
microbicides, and to renewed enthusiasm about vaccine and HIV cure research.
These biomedical strategies are based in declarations of faith in the powers of
bench science, big data, population targeting, implementation science, and
“smart investments” (Fauci and Marston 2013; PEPFAR 2012). Such initiatives
encrypt and occlude a neoliberal policy agenda that favors cutting costs
(particularly long-term financial commitments) by limiting broad-based scale-up
efforts and instead promoting targeted prevention and solely biomedical
treatment expansion as a means of halting the epidemic. Even as treatment
expansion has fallen far short of its goals, and patients are routinely lost to
follow-up because of the socioeconomic challenges that remain unacknowledged by
such an approach, donors and experts are doubling-down on a biomedical turn.
“Rather than seizing [the opportunity for reduced transmission and better
illness management created by treatment expansion] by demedicalizing the
provision of ART,” argues MSF’s Tom Ellman (2015, 304), “programs are
medicalizing HIV infection in the healthy.”
What is then ironic is that the End of AIDS discourse has managed to discredit
and open the door to de-funding the very interventions and investments that have
the potential to make treatment and prevention more successful. This includes
interventions rooted in health systems strengthening, community-based provision,
and an embrace of the right to health, as well as those which attend to the
broader social inequities and socioeconomic constraints that threaten the
success of solely biomedical interventions. The recent decade of increasingly
technocratic scale-ups of HIV treatment has left a legacy across many health
systems of defunded community-based care and prevention projects (Kalofonos
2014; Maes & Kalofonos 2013), overworked and overburdened health systems
(Pfeiffer & Chapman 2015; Pfeiffer et al. 2014), and increasingly fragmented and
disjointed landscapes of care (Geissler 2014; Moyer 2015; Whyte 2014).
In addition to these general and much-remarked upon trends, we wish to note
three crucial but under-examined impacts. The first is the especially perverse
impact of the biomedical turn on activism, whereby the far-reaching rights-based
dialogues of previous decades become distilled into a narrow focus on the right
to (biomedical) treatment, as access to rights-based prevention modalities,
structural interventions, and broad-based socio-economic support fall by the
wayside. The second impact, much related to the first, is the
institutionalization of a two-tiered system of treatment access. While access to
first-line treatments was ensured by earlier activist movements, many patients
in poorer countries today only retain access to the cheapest and most toxic drug
cocktails, a second-class first-line of treatments that fosters far more
side-effects. In turn, these are harder to address within depleted health
systems and more likely to result in treatment disruptions. Meanwhile, access to
second-line treatments and consistent viral-load monitoring is extremely
fragile. These trends point to the dual effects of an increasingly neutralized
and side-lined AIDS activism combined with the power of the pharmaceutical
industry, which has continued to wage battles around intellectual property,
trade, and pricing schemes while fueling End of AIDS discourses.
Finally, an acute environment of fiscal austerity following the 2008 financial
crisis, combined with the additional demands placed on health systems by uneven
and overly biomedical methods of HIV program scale-up, has produced a depleted,
overworked, and increasingly disillusioned health workforce in many countries.
Within underfunded health systems, mid-level policymakers and clinicians are
essential to keeping the basic machinery running and ensuring more broad-based
health system improvements. Combined with these other constraints and pressures,
the production of ever-more unrealistic public health policies related to Ending
AIDS (such as Lesotho’s claim to be implementing universal access to treatment
while less than 50% of its existing population in need of treatment has access
to it), produces dystopian health systems in which patients’ disruption or
“failure” on treatment is nearly ensured, while bureaucratic fantasies are
peddled at international meetings and summits.

Alternative futures?

It seems clear (at least to anyone with a minimally critical view), that the end
of AIDS is not around the corner, and that a future with AIDS will be with us
for some time to come. But we can help contribute to a better understanding of
these policies’ impacts as well as their alternatives.  We can also help to
call failed policies into question by documenting them, unmasking the
mystifications that are contained in the fictions being created about them, and
witnessing their real impact in the lives of people on the ground.  This is a
contribution that the anthropology of AIDS has been making since the very
beginning of the epidemic, and it is as relevant today as it ever was (Moyer
2015).  In closing, it is worth emphasizing some of the ways in which
anthropological research and analysis can build on this legacy and contribute to
the broader field of HIV research in the fourth decade of the epidemic.
Examples abound, but we offer a few for consideration:  anthropologists can link
analysis of policy/discourse with realities in geopolitically specific places,
revealing disjunctures and opportunities; we can continue documenting (through
careful, long-term ethnographic research) the experience of human suffering that
takes place at the grassroots, far from the meeting rooms of Geneva, New York
and Washington; we can reveal how populations – patients, clinicians, service
providers, policymakers, activists – are coping with AIDS, not as it ends, but
as it continues to unfold and evolve; and we can use ethnographic approaches to
call attention to the forms of community-based expertise that exist (albeit in
different ways and to different degrees) in affected communities everywhere
(remember who invented safe sex and harm reduction!) and ask how
re-biomedicalization of the epidemic undermines the promise of these local forms
of knowledge.  Real-world expertise still resides in the hands of affected
communities, and careful, long-term anthropological fieldwork can document this
like perhaps no other approach can.  We can also do a much better job than we
have thus far of studying up, and investigating the global health and AIDS
industries, the ways in which they operate, and the interests that they tend to
serve.  We can also do a better job of linking studying up to studying down,
drawing attention to the kinds of political mobilization and resistance that are
still possible to observe in some places in response to these industries.
This list could of course extend much further, but let us end by emphasizing the
importance of anthropology’s long-term focus on the dialectical relationship
between both continuity and change:  while there are striking similarities here
over time in the histories of signification that we have briefly analyzed here
(just think about the persistence of AIDS-related stigma and discrimination),
there is also remarkable evidence of affected communities’ ability to reinvent
themselves, even in the face of immense structural constraints.  Anthropological
research may be better able to document this than almost any other discipline
– but only if it remains critical, reflexive, and politically engaged.  This
is a project that is worth taking on.

Works Cited

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New England Journal of Medicine, 372(4), 303-305.

El-Sadr, W., Harripersaud, K., & Bayer, R. (2014). End of AIDS–hype versus
hope. Science, 345(6193), 166.

Fauci, & Marston. (2013). Achieving an AIDS-free world: Science and
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Geissler, Wenzel P. (2014). The archipelago of public health: Comments on the
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Prince and Rebecca Marsland, eds. Athens: Ohio University Press.

Kalofonos, I. (2014). ‘All they do is pray’: Community labour and the
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Pfeiffer, J., Robinson, J., Hagopian, A., Johnson, W., Fort, M., Gimbel-Sherr,
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