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We
won't treat, or prevent, our way out of the epidemic
Gregg Gonsalves, AIDS and Rights Alliance for Southern
Africa, Cape Town
August 02, 2007
"We won't treat
our way out of the epidemic" is the latest AIDS-meme, a tiny
bit of an idea, which has made it way into the comments of leaders
of UN agencies, august economists, noted journalists and "experts"
on Africa. You know who you are-you've been infected by this rhetorical
virus and you can't stop talking about it.
As a treatment activist,
I find this phrase highly annoying, though not for the reason you'll
all leap to assume: that as a person living with AIDS, who has fought
for treatment most of my adult life, I find it "anti-treatment,"
but because despite some of the truth embedded in this remark, it
makes certain assumptions that are absolutely false. As someone
who has seen many friends, relatives and colleagues die from the
disease, I find the chattering class' latest conceptual fad an utter
simplification that can only come through myopia and the distance
from the disaster-from the hillside above the battle, all those
soldiers do look like sheep.
We won't treat our way
out of the epidemic. Well, what does this mean? Since it's a phrase,
not a fully-fledged argument, let's try to see how the phrase and
its variations get used.
We won't treat our way
out of the epidemic. Well, the phrase's most obvious interpretation
is meant to tell us we have too many people living with AIDS to
sustain on antiretroviral and other AIDS medications for the course
of their lives. Yes. Getting the 40 or so million people living
currently with HIV on ARVs and keeping them healthy, while more
and more people get infected, and thus need treatment as well, is
unsustainable, and probably impossible, for lots of reasons.
But then again, if Americans
keep getting fatter and fatter, the costs of chronic care for diabetes,
heart disease, cancer and other sequelae of obesity will eventually
become unsustainable as well. North Americans, Europeans and the
Japanese are also quite fond of smoking, but no one has talked about
rationing care for lung cancer, heart disease and emphysema, or
worse yet, making claims such as William Easterly from New York
University does, which come close to saying that AIDS treatment
really shouldn't be done at all.
Easterly's thesis on
AIDS treatment is essentially an exhibit in a larger case he is
making against the lords of poverty--the academics, UN officials,
the NGO bureaucrats, prime ministers and presidents of rich countries--who
have piled up grandiose plans for "saving Africa" and
other poor regions of the world, and have achieved very little for
all their billions and billions of dollars in foreign aid. Think
smaller, focus on local solutions, goes Easterly's mantra, and frankly,
it makes sense to me.
But he's wrong on treatment.
I won't get started on the factual mistakes in his recent New York
Review of Books article (e.g. ARVs offer 4-5 years of additional
life expectancy to those with HIV/AIDS), but ask him to stop having
a conversation with Jeffrey Sachs and talk to people like Zackie
Achmat, or even Beatrice Were who he mentions in his NYRB review
of Helen Epstein's new book, The Invisible Cure: Africa, the West
and the Fight Against AIDS. The case I'll make later in this piece
is that for all the fanfare of "universal access" or the
WHO's 3x5 campaign, the push for AIDS treatment is something more
modest than he supposes, more locally derived, and indispensable
to the fight against HIV/AIDS, to the success of HIV prevention.
Easterly's flaw is the same one that he hurls at Sachs-he's not
listening, he's pushing his own "big idea" instead of
talking to people on the ground about what treatment means for them
and their communities.
We can't treat our way
out of the epidemic. Well, an alternative interpretation of our
meme-du-jour could be: we can prevent our way out of the epidemic.
In fact, the case made in Easterly's article in the NYRB, in Epstein's
articles in the same journal (which are the basis for her book,
and which is slowly making its way to me from Amazon.com in the
USA), that is made by Kevin de Cock at WHO in speech after speech,
that is made by Alex De Waal in his book, AIDS and Power, is that
HIV prevention is the way to go. Treatment has hijacked the response
against AIDS, let's stop this foolish investment and pour money
into HIV prevention and then we'll be cooking with gas. We just
need to circumcise more men, test more people, give them more information
or more condoms, tell them to stop sleeping around (at least concurrently),
and then we'll see a real change in the course of the epidemic.
Hello.
Has anyone looked at
the data on HIV prevention lately? We've failed miserably despite
huge investments. This is the dirty little secret of HIV prevention,
as it is currently envisioned and implemented. For all the resources---and
I'd bet Professor Easterly, the resources expended on prevention
have been far more than expended on treatment in the developing
world over the past 26 years---we've delivered very little for our
money.
So, what is to be done?
Well, first,
can we stop this ping-pong tournament of how we think about AIDS:
prevention-treatment-prevention-
treatment-prevention-treatment. It's making me dizzy watching the
field oscillate maddeningly between these two supposed choices.
Second, I would make
the case that HIV prevention needs a radical re-think. I believe
Easterly and Epstein do start this process, in the critique of schematic
approaches to prevention, such as "ABC", particularly
the reflexive and narrowly conceived promotion of abstinence or
condoms; of the multi-million dollar investments in social marketing
initiatives like Lovelife, which have little relationship to the
lives of the young people most at risk in South Africa; and in a
realization that communities may just have some of the answers that
have eluded the experts for two and a half decades. But Easterly's
and Epstein's articles don't go far enough in their critique and
Epstein in particular seems to be hanging onto concurrency and interventions
targeted at this kind of sexual behaviour as a new talisman of sorts.
When Easterly keeps harping
on the notion that the push for AIDS treatment is somehow donor-driven,
or somehow an emanation from the Jeffrey Sachs-es of the world,
I cringe, because I see him more interested in a debate with a fellow
academic than a simple look at history. For those of us who have
fought for AIDS treatment, we know that it was our fellow PWLHAs
in Brazil, in Thailand, in South Africa, in Uganda, who first raised
the call for treatment. They saw the rest of us in the "North"
getting drugs that were saving our lives and said that their lives
were worth the same as ours, no more, no less. Easterly, as a newcomer
to AIDS, somehow missed the absolute refusal, as late as 2000, of
the leaders of UN agencies, donor nations and foundations, public
health institutions, governments and the big international NGOs
to acknowledge these calls until people literally went out on the
streets to demand their right to health, to life. The push for AIDS
treatment began as a local response to the absolute devastation
of our colleagues' communities, not a call to treat the world, but
to treat them, their brothers, their sisters, their daughters, their
sons, their mothers, their fathers.
What if the future of
HIV prevention is about galvanizing communities in the same way
that Grupo Pela Vidda, the Thai Network of People with AIDS, the
Treatment Action Group, and dozens of other quite small groups around
the world have done around treatment? These are the modest, local
efforts that Easterly prizes so dearly, but is frankly oblivious
to when it comes to AIDS treatment.
What if instead of measuring
our success in the number of condoms distributed, people given HIV
tests, couples counselled about fidelity by NGOs, we measured it
in communities mobilized around stopping women from being raped,
creating educational opportunities for young people, economic opportunities
for women and for men so they don't have to go work in the mines,
stopping substance users from being locked up and tortured in the
name of drug treatment, ensuring that people have a decent roof
over their heads, for the establishment of clinics for STDs and
yes, for AIDS treatment? What if communities in Africa and elsewhere
started saying, the world you take for granted Professors Easterly
and De Waal, Dr. De Cock, Ms. Epstein, is the world we deserve too,
where you don't worry about getting health care, having no recourse
to justice if you're raped, where you can get a good education and
a good job if you work hard and you can go home at night to a nice
warm bed.
This is what I see the
Beatrice Weres, the Zackie Achmats and the other little known activists
fighting for across the globe-it's not about prevention vs. treatment,
it's about making people's lives better in their communities from
the ground up. As Easterly and Epstein rightly note, it's when communities
mobilized that we've seen infections go down in Uganda. A friend
of mine from Berkeley, California, who once upon a time ran a big
HIV prevention programme, once sat down with his staff over after-work
drinks to figure out how many infections they had averted: a handful
they supposed. This friend also tracked the rise of HIV prevention
programmes in San Francisco with the drop in HIV infections in that
city in the 1980s. The decreases in infections came before the programmes
even started. The "truth" that Epstein discovers in her
book and Easterly mentions in his article, is something we've known
for a long time, but the "experts" have ignored us:
The Ugandan AIDS activist
Beatrice Were told Epstein: As a woman living with HIV, I am often
asked whether there will ever be a cure for HIV/AIDS, and my answer
is that there is already a cure. It lies in the strength of women,
families and communities who support and empower each other to break
the silence around AIDS and take control of their sexual lives.
So, the debate isn't
about treating our way or preventing our way out of the epidemic.
It's about getting people to stand up for themselves and ask for
what they need. The folly of those who complain about the push for
access to treatment is that they misrecognize what is happening
as simply asking for pills or, since they only move in elite circles,
see the drive for access to ART as Bono's, or Jeffrey Sachs' or
Paul Farmer's campaign, not one about the dignity of ordinary people
claiming their basic human rights.
So, treatment and prevention
are inextricably linked, but not in the facile ways that appear
in UN documents and are ridiculed by the likes of Professor Easterly.
I'd ask the "experts" to imagine our lives-of those of
us who lived in New York or San Francisco's gay communities in the
1980s, in Kampala during the same decade, in Cape Town or in African-American
communities in the USA now, and think about the sheer terror we
experienced and continued to experience. We've never had the luxury
to put what was happening to us in separate boxes-today, we're fighting
for treatment, tomorrow, we're fighting for prevention. Whether
it was Act Up New York demonstrating at the FDA for speedier drug
approval, or against the Catholic Church's stance on condoms, or
the Treatment Action Campaign's marching for ART treatment or marching
against gender violence in the townships like Khayelitsha here in
Cape Town, we realized that our governments, our terribly venerable
institutions couldn't give a damn about us. We were fags, we were
junkies, we were black, we were poor. And we were telling them otherwise,
that our lives mattered, that we were not expendable, disposable
people. And we were mobilizing to help ourselves, to craft our own
way out of the hell that they had helped to create for us.
So, if we continue to
see the fight against AIDS as a debate between Bill Clinton and
Bill Easterly, we are doomed. And somehow I feel as if they'd like
to keep it that way. If the fight against AIDS turns into local
political struggles, about local accountability of governments and
institutions, about providing basic services to address people's
basic needs, things get very uncomfortable for certain people. If
AIDS is a political crisis first and foremost, leaders of all sorts
have a vested interest in keeping things from boiling over. The
AIDS International, which Easterly discusses in his NYRB article,
has been responsible, not for picking the "wrong" set
of interventions as Easterly supposes, but for a graver sin: for
creating a system that has depoliticized AIDS, put it in the realm
of experts, technical advisors, reduced it to bean-counting, made
it about discrete interventions that can be easily packaged for
donors and their grantees and sends communities chasing their tails
to make sure their "deliverables" are delivered.
I mentioned recently
to some colleagues that I would be willing to put my hypothesis
to the test. Let's randomize three sets of communities: in one we'll
dump lots of condoms and make sure pharmacies are stocked with ARVs
and OI drugs, in the second set, we'll also offer these commodities,
but we'll make a five-year investment in building up a cadre of
activists, who know about their rights and can advocate for them.
In fact, to sweeten the deal for Kevin de Cock and Helen Epstein,
we'll make sure that there is routine testing for HIV in medical
settings, we'll circumcise all the men and there is widespread information
dissemination about the dangers of concurrency in both intervention
arms of our study. In the last set of communities we'll make no
additional interventions, it will be our placebo group.
For me, this study, at
least retrospectively and with historical controls, has already
been done--you can read about it in the unwritten history of AIDS,
the stories of the activists from 1981 to the present day who have
given their lives to helping their communities, to seeing that people
had the treatment they needed for AIDS, for TB, for asthma, for
diabetes, for when someone is sick, you try to help them get better;
could get condoms and clean needles, even though their priest or
their government said that these kinds of things promoted bad behaviour;
had someone to go to court with them when their husband or their
john beat the shit out of them; someone had a bed for the night
instead of sleeping out on the streets; worked in the most degrading
jobs to see that their kids could go to school because when they
died of AIDS, they knew an education would provide some hope for
their children's future.
I once saw a movie called
La Historia Oficial, The Official Story, about a schoolteacher in
Argentina, who wakes up to realize what had happened in her country
during the 1970s and 80s. One of her students writes on the blackboard
that "history is written by assassins." Well, perhaps
the history of AIDS hasn't been written by assassins, but it's still
written by the "big" men and women, and tells the "official"
story.
Once day we'll hear the
real tale of the AIDS epidemic, which is, in part, hopeful, even
in places where hope was least likely, has seen success where success
was thought impossible. So far, the last reel of the story though
seems quite sad: there is a swanky party where old presidents, university
professors, writers, philanthropists, high-level government and
UN officials mingle sipping cocktails, talking about how terrible
the AIDS epidemic is, and their own new theory for helping "those
people." Meanwhile, the lights go out in a small house in a
small country far, far away, where the one person who spoke up,
spoke out fearlessly for her community, decides it's better to go
work for the government, so she can feed her children; or where
a young man who has been fighting against rape in his community
just can't take the strain of the working 16 hours a day as a volunteer;
or where the last activist, who told her friends and family to know
their status and remain faithful to their partners, died of AIDS
because of a meme, and idea generated in Geneva or New York, which
decided quite on its own, that pills were the last thing she needed.
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