by Gregg Gonsalves
AIDS and Rights Alliance for Southern Africa
Cape Town
02 August 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 HIV, 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 Campaign, 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. At some point in the film, 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 theories 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, an 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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