After the End of AIDS
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After the End of AIDS | Gregg Gonsalves | International Treatment Preparedness Coalition | Source https://groups.google.com/forum/#!topic/hiv-pja-strategy/Yk_s4roGLU0|

But the Prince Prospero was happy and dauntless and sagacious. When
his dominions were half depopulated, he summoned to his presence a
thousand hale and light-hearted friends from among the knights and
dames of his court, and with these retired to the deep seclusion of
one of his castellated abbeys. This was an extensive and magnificent
structure, the creation of the prince's own eccentric yet august
taste. A strong and lofty wall girdled it in. This wall had gates of
iron. The courtiers, having entered, brought furnaces and massy
hammers and welded the bolts. They resolved to leave means neither of
ingress or egress to the sudden impulses of despair or of frenzy from within.

—“The Mask of the Red Death", Edgar Allan Poe, 1842

Everyone loves a happy ending. After 33 years of a terrible epidemic,
looking forward into the distance and glimpsing the end of the
disease, an AIDS-free future is like seeing water on the horizon after
a long, hard walk through the sands of a desert. We want it so
desperately, so acutely, we can taste it.

UNAIDS. The US State Department. The Global Fund to Fight AIDS,
Tuberculosis and Malaria. Some countries. Some states. Some cities.
Me. You.

We announce it. We set our sights on it. It’s no longer a reasonable
goal to suggest that perhaps several million more people—particularly
those under 350 CD4+ T-cells—should receive first-line antiretroviral
therapy. It’s ARVs for all, with no CD4 thresholds, full laboratory
monitoring, including viral load, with treatment regimens the same no
matter where you live on the planet. We can do it all. The future is
here. It’s beautiful. We embrace it. We are free.

While this may seem an overblown depiction of some of the rhetoric
flying around lately, a strange strain of utopianism has emerged as of
late, just as we need clear, hard-headed thinking and analysis.

You see, the future hasn’t arrived quite yet. We’re in a messy and
rather uncertain present.

Yes, we’ve had some remarkable successes. No one would have thought in
2000 that today millions of people would be on ART. Even though the
biology of HIV infection suggested it earlier than the results from
HIV Prevention Trials Network trial 052 offered definitive proof, the
idea that treatment could prevent transmission rocked the world with
the promise of a potent new prevention tool, even if a real vaccine
was decades and decades away. We did great things.

Can we end AIDS? Perhaps. As with the Mississippi baby born with HIV
who scientists falsely believed was cured of AIDS, we need to be wary
of early triumphalism, mistaking promise for victory, of taking an
isolated case in exceptional circumstances as our touchstone. We can
make progress against the disease, particularly where there is money,
commitment and a strong health system and safety net, but if a
Vancouver, a New South Wales, or a New York State succeed in ending
AIDS, what does it mean to just say, follow their lead, do what they

Can we end AIDS? This isn’t the question we should be asking at least
in the short term. We can hold the hope close, keep the promise
alive, but we need to confront our present, now, and all the problems
it poses.

Most places are far away from Vancouver, New South Wales and New York
State. Even in the USA, there are states in the American South, which
have refused to expand access to Medicaid for poor people, where there
have been waiting lists for HIV drugs, and where the HIV epidemic has
become deeply entrenched and one’s future with HIV isn’t as rosy as it
might be up North.

In 2014, the end of AIDS is a mirage leading us astray, deeper into
the Sahara of our minds, further along through the rooms of Prince
Prospero’s castle. Things are not hopeless though. But we’ve got to
shake off the hallucinations, the fever-dreams of false promises and
wishful thinking promoted by some UN agencies, some governments and
even some activists.

Where can we start? First, we’ve got to see the crisis right in front
of our noses. We can’t turn our backs on our comrades. Some of the
leaders in this movement, organizations like TASO in Uganda, TAC in
South Africa, BONELA in Botswana, the Thai Treatment Action Group,
ABIA in Brazil and countless others have been suffered 50 to 75%
budget cuts, drastically cut their staffs and services over the past
few years and many others have closed their doors. If the very
community groups who launched the fight for AIDS treatment in the
global South are teetering on the edge of extinction, what does that
mean for our collective future? In Western Europe, suffering under
austerity politics, AIDS organizations have faced similar struggles;
in Eastern Europe as donors have pulled out of the region, no one has
stepped into fill the void and vital services for drug users are in

If we lose this community infrastructure of service provision and
activism, it will be difficult to create it again and it was upon this
foundation that our successes against AIDS have been built. Do we
think we can end AIDS without the mobilization of the very communities
most affected by the disease? I don’t believe we do, but too many of
us seem oblivious to the precarious future of what we’ve diligently
put together over the past three decades.

We don’t have much time. We’ve got to band together immediately to
ensure these organizations can stay afloat or in the worst case,
ensure that the work they do can be maintained or revived in some
other way, should they disappear tomorrow. This means going to donors
together to make appeals on others’, not just our own behalf. The
temptation here is to squabble for crumbs from the table, turning on
each other to get our piece of the pie for ourselves and ourselves
alone at this moment of manufactured scarcity of funds. It also means
strategizing together about new ways to raise money for our work,
which doesn’t put us at the mercy of the donor governments and
foundations that once loved us but have moved onto the next big thing
and for whom the epidemic was a faddish attraction for a decade or so.

It also means figuring out what is at the core of our work and what is
expendable. This means assessing the relative health benefits of what
we do, so we can prioritize and triage when budget cuts do come or in
most cases, come again for the second, third or fourth time. It’s
about hunkering down and saving what’s most important to us. If we
can’t decide what really matters to us or shy away from making these
choices, we won’t be able to save what matters most. What do we do
best, what is most effective, what are others not doing that we do?

It’s not only NGOs who are facing budget cuts, many countries are
seeing less foreign assistance for HIV/AIDS, either because they’ve
“graduated” to middle income status or soon will be doing so, are one
of the countries where bilateral donors are pulling away from. Even
in countries that are still a priority for donors, many are dealing
with flat funding but rising needs, which means less money to go
around, even if the sums are the same.

What happens here? Again, choices need to be made about what can be
done with available funding and resources. To some, this kind of
prioritization is an anathema—activists are dreamers and envision the
future; day-to-day decision-making, sorting through the hard choices
is not for us. Well, if we are not in the room when the hard choices
are made, the choices will be made for us. When budgets are tight,
it’s the “expendable” items—and people—that are dropped and crossed
off the list. Does anyone really believe governments are going to
prioritize men who have sex with men, sex workers and drug users if
we’re not in there fighting for their inclusion? But we can argue for
keeping things—that’s the easy part—but we have to be willing to
accept trade-offs, the fact that we can’t do everything, and that some
things we want will fall by the wayside.

In our prevention portfolio—what works? That is, what interventions
reduce incidence and how much evidence do we have to support their
effectiveness? In many discussions I’ve been part of over the years,
I’ve heard people decry the “medicalization” of HIV prevention and
then defend the poor data on behavior interventions with claims that
“there are other kinds of data other than that from clinical trials”.
This is all well and good, but if there isn’t enough money to go
around how do you set priorities when we have interventions that are
clearly effective in preventing new infections, like treatment as
prevention, pre-exposure prophylaxis, circumcision, HIV testing and
condom promotion? Do we invest in what we know works or what we think
we know works? Though this is a crude articulation of the choice
before us, and surely some will want to deconstruct this statement to
death, it doesn’t obviate the need to make choices upon some hard
evidence. Even among our more effective prevention interventions
choices need to be made—do we invest in treatment as prevention or
PreP, targeting people at highest risk of transmitting or acquiring
HIV, or use these drugs to keep the sickest patients alive? I am not
suggesting that these choices are the ones we should live with
forever, but they are the choices we have in front of us today. We
can fight for more funding for AIDS and at the same time start a
rational discussion about what we can do with what we have now, today,
this month, this year.

In treatment, there has been a move away from the public health
approach to ART provision that drove the early expansion of ART access
in resource poor settings to a new, expansive vision with ARVs for all
regardless of CD4 counts and now a recent call for viral load for all
as well. What data do we have that suggests there is a clinical
benefit for ART provision at all CD4 counts for HIV+ people (above and
beyond the prevention benefit for our partners)? While viral load
monitoring is a good thing, how much would it cost to really ensure
that the laboratory infrastructure necessary, the training and
personnel required to run these tests, the equipment and repair
networks needed, are in place across the planet? Frankly, I’ve heard
gross overstatements of the ease of making viral load testing happen
and happen well. Even with more money, the constraints to viral load
testing are acute and to posit otherwise is magical thinking. Am I
wrong? Show me the data that I am—we can start with current lab
capacity in Africa—and I’ll recant. But even then, there are stark
choices ahead.

I am not suggesting that I wouldn’t support a one-size-fits-all model
for ART provision, but the public health approach to HIV disease was
based on a recognition that both financial and the paucity of other
resources made the Cadillac model of care available in places like the
US unrealistic for global implementation. There are millions of
people in acute clinical need of ART now—with below 200 CD4 cells—what
do we say to them? With a 3% drop last year in AIDS funding according
to the Kaiser Family Foundation is it serious to say: let’s build a
more comprehensive model of care across the board, when programs are
struggling to make ends meet? It’s an easy out to say: you’re being
pessimistic; it’s not an activist job to weigh in on things like this;
we’re just there to hold governments and others’ feet to the fire to
do better. We’ve spent decades in the trenches making programs better,
research and drug development better, we have a role to play in the
current crisis where governments and others providing services are
trying to figure out what to do. Just saying “do better”, “do more”
is a cop-out and a recipe for irrelevance. We need to marshal
evidence and make a case for what works in HIV treatment too with
today’s resources, while dreaming of a better future.

These are the real trade-offs and they are being made every day now by
NGOs, by governments and others providing services to people with HIV
and we need to be in there arguing for what to do now. But there are
false trade-offs we need to confront and continue to address. For
instance, the designation of certain countries as middle income based
on World Bank classifications has been used to put countries on a
second-or-third tier for AIDS funding from international institutions
and other donors. The trade-off posited here is that there are really
poor countries and then there are countries that can afford to pay for
their own AIDS response and thus the poorest countries should come
first. It all sounds rational until you actually reformulate the
trade-off as it really exists: there are poor countries with large
epidemics that affect the general population and then there are
countries with more financial resources but no willingness to confront
their AIDS epidemics as they affect people their governments despise,
for instance, drug users in Eastern Europe. Then the choice becomes
clear: we’ve decided to invest in poor populations in Africa and let
drug users in Eastern Europe die. This isn’t exactly correct as some
countries with large, generalized epidemics, such as Botswana, are
classified as middle income as well and have suffered the fiscal
consequences. With this starting point, one might make a strong case
that the places with greatest absolute need and fewest absolute
resources should be prioritized, but there also needs to be an
emphasis on supporting social mobilization in these middle-income
countries to push their governments to step up their domestic
investment in HIV/AIDS. I really don't have the answer to this dilemma
but simply throwing up our hands and either saying “we just need more
money” or “these governments will have to pay for their AIDS programs”
obscures the real choices.

One of the other areas of false trade-offs is in the new paradigm
emerging for drug pricing. Again, it’s middle-income countries being
pitted against poorer nations. The Medicines Patent Pool has been
rolling out license after license with pharmaceutical companies, and
in most cases, middle-income countries are excluded from the low
prices negotiated as terms of these agreements. The Global Fund has
also been flirting with tiered pricing—again, with one price for poor
countries and then a higher price for middle income nations. This
false trade-off—that we have to sacrifice middle income countries for
poorer ones in drug pricing—is a stark departure from earlier activist
work that was based on global solidarity and stressed TRIPS
flexibilities, compulsory licensing, patent oppositions, and didn’t
take the current patent regime and drug company policies as a given.
Perhaps this is the trade-off we have to make—but the reversal in
support for more progressive approaches to drug pricing by key
activists and NGOs has never been discussed in this way, as an
explicit severing of our bonds of solidarity with our comrades in
places like India, Brazil, Thailand—people who have been central to
the fight against AIDS. Frankly, it’s a trade-off I am not willing to
make quite yet, as I am not certain we’ve run out of options besides
for throwing ourselves on the mercy of the pharmaceutical industry.

Finally, the last false trade-off is the biggest one of all and
underlies the notion that there is not enough money to go around and
that we’ve got to make do with what we have. The real trade-off is of
course, health spending and other social spending vs. spending on bank
bailouts, defense, Presidential compounds and motor pools. It’s
austerity for us vs. Cadillacs, champagne and caviar for them. AIDS
activists in many places do AIDS. Maybe they do TB and HCV, but
taking on broader social change is often the exception to the rule
(e.g. in South Africa, many current and former TAC activists work on
education, corruption, public safety and sanitation). While Occupy
Wall Street has receded from the public imagination and public sphere,
the real trade off here is the 1% vs. the rest of us. If we’re going
to see an end to AIDS it’s going to have to come in the context of a
fairer world and we have to be part of that fight.

The End of AIDS.

Someday. But until then there is work to do. We can’t trade away what
we need to do in the short term—the hard, practical work in the face
of fiscal constraints and dwindling political interest in our fate
—for a single-minded investment our long-term aspirations. Otherwise,
we’ll lose the rest of what we have. We don’t have to succumb to
despair to confront the uncertainty of the present moment, but we’ve
got to recognize it for what it is, a dangerous, precarious time for
all of us.

Gregg Gonsalves


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