Okay, okay, I’m more than two years behind schedule. But we’ve finally managed to upload links to most of the papers, documents and visuals referenced in The Wisdom of Whores.

You can find anything referenced in the Footnotes here (that’s the notes labeled with asterisks which appear at the bottom of pages in the text). You can find anything referenced in the Endnotes here (that’s the notes labeled with numbers which appear at the end of the book). Links to full text versions of most of scientific papers and reports referenced in the book are also provided in the Bibliography.

Happy Christmas, and all other holidays. And thanks to MP and NL for their help with this, as well as for enriching my life.

As far as I can tell from the file downloads for December, over 5000 people downloaded the book. Many of you were kind enough to write to thank Granta, and some of you copied me. Comments include:

“I’m a 22 year old student from India and I just wanted to thank you and your
publisher for giving the ebook for free, making it more feasible for people like
me, who don’t usually have the same financial means to purchase ebooks,”

“Knowledge and awareness is the best present anyone can
receive this holidays.”

“Congratulations on this wonderful move from Granta — how fabulous of them!”

“I just wanted to thank you for offering the eBook version of Wisdom of Whores online, for free, for the month of December. People WILL want paper copies after reading it in this format…”

“I think a number of students and my mother and some others will benefit highly, and it gives those of us with paper copies the warm fuzzies toward you and Granta. And I can take your book with me every time I travel – this is a huge boon for those of us who do much of our writing in hotel rooms!”

“I realize that making an ebook available for a free download is a complicated tradeoff between mindshare and revenue for the publisher and author, and I’d like you to know that in my case, at least, I think the tradeoff worked.”

“Thank you so much for allowing us to download this book. I read the hardcover
version over a year ago, and the information I learned still informs my research
and discussion on HIV/AIDS today.”

“Your decision to make The Wisdom of Whores available in the form of e-book is much appreciated. I write from Nepal and for us first it is a challenge to get a copy, and second the price of books printed abroad is significant.”

The eBook is no longer available on this site, but you can find information about e-readers here.

I’m very grateful to my publisher, Granta, for allowing readers free access to the eBook of the Wisdom of Whores for December 2010. A little disclosure: I had a bet with Granta staff about how many people would download the eBook. The bet was made in second bottle territory so the details are hazy; one of said we expected a maximum of 15 downloads, the other did not venture beyond single figures.

As far as I can tell from the file downloads for December, over 5000 people downloaded the book. Many of you were kind enough to write to thank Granta, and some of you copied me. Comments include:

“I’m a 22 year old student from India and I just wanted to thank you and your
publisher for giving the ebook for free, making it more feasible for people like
me, who don’t usually have the same financial means to purchase ebooks,”

“Knowledge and awareness is the best present anyone can
receive this holidays.”

“Congratulations on this wonderful move from Granta — how fabulous of them!”

“I just wanted to thank you for offering the eBook version of Wisdom of Whores online, for free, for the month of December. People WILL want paper copies after reading it in this format…”

“I think a number of students and my mother and some others will benefit highly, and it gives those of us with paper copies the warm fuzzies toward you and Granta. And I can take your book with me every time I travel – this is a huge boon for those of us who do much of our writing in hotel rooms!”

“I realize that making an ebook available for a free download is a complicated tradeoff between mindshare and revenue for the publisher and author, and I’d like you to know that in my case, at least, I think the tradeoff worked.”

“Thank you so much for allowing us to download this book. I read the hardcover
version over a year ago, and the information I learned still informs my research
and discussion on HIV/AIDS today.”

“Your decision to make The Wisdom of Whores available in the form of e-book is much appreciated. I write from Nepal and for us first it is a challenge to get a copy, and second the price of books printed abroad is significant.”

The eBook is no longer available on this site, but you can find information about e-readers here.

In respect of the paperback cover pictured above which I whined about and now love, I would like to offer to Granta the nine words that are so hard to come by in the English language:

I was wrong. You were right. I am sorry.

The Guardian on Saturday ran a review of The Wisdom of Whores, which is newly out in paperback in the UK. In it, Nicholas Lezard suggests I sound like a fun person to go for a drink with. By conincidence, I spent the weekend with someone who was at university with Nick. He was, aparently, nicknamed The Mole by those who had a grudging admiration for his almost entirely nocturnal existance.

That may rather explain both why he enjoyed the book and why he thinks I might be up for a drink. For a book that pretends to be about epidemiology and public health policy, an awful lot of the activity in The Wisdom of Whores takes place with a beer after midnight.

Another nicely nuanced review is in: The New England Journal Of Medicine says that “The Wisdom of Whores” is:   “…required reading for anyone who works on HIV and AIDS or in the broad field of global public health…”      and      “…Pisani reminds her readers that the real work of fighting the epidemic is done in these highly specific trenches of sex and drug use. It is a take-home message that is worth remembering.”
Read the full text of the New England Journal of Medicine review here (.pdf). The review is by Richard G. Parker, Ph.D. (Columbia University Mailman School of Public Health, New York), and appears in the March 26, 2009 issue of the NEJM. (Disclosure: Mark posted this for Elizabeth while she was traveling)

Graham Holliday, who writes the Frontline blog, has encouraged me to embed a feed of the discussions (from 19.30 GMT). Here’s the attempt. I’m in discussion with Yusef Azad of the National AIDS Trust. He’s a policy wonk, which is a compliment, and also decidedly gorgeous.

At the end, you get to vote on book covers…

I am honoured that Ms. Castro has cracked open her very own copy of The Wisdom of Whores.

I’ve also put up some new reviews, including one by the much-admired former UN Special Envoy on AIDS in Africa, Stephen Lewis (not pictured above). But it was Carlin Romano (ditto) in the Philadelphia Inquirer that got me thinking. He had this to say:

A hearty welcome, then, to Elizabeth Pisani, holder of a Ph.D. in epidemiology, who perfectly incarnates the link that should exist between writers and the world. The Wisdom of Whores, her rollicking, eye-opening, hilarious account of the underbelly of international AIDS research, awaits the Hollywood producer smart enough to make it into a Brangelina vehicle.

Ok, so if Angelina plays Ines, the best-looking sex worker in Jakarta, who does Brad play? Or if one went into a wild flight of fancy and cast Angelina as Elizabeth, well, who does Brad play? The Wisdom’s got plently of sex in it, but the love interests are either addicts or gay. How much creative license is one allowed? Perhaps it depends on the small print. Movies used to be “Based in a true story”. Then, in the wonderful transgender footwear epic “Kinky Boots” (pictured above), they drifted to “Inspired by a true story”. And last week I saw a further drift, to “Suggested by a true story.” Hell, maybe they’ll even give me a Lambretta in the movie, instead of my grotty old Honda Astrea. Or put me in kinky boots.

And maybe I have. This comment from reader Bob in Thailand/Singapore:

“The book works like a love charm and chick magnet. Conversation normally starts with “thats an interesting title”…”

So, lads, get it and flaunt it.

I’ve been copied in on an e-mail thread which discusses these issues, in sometimes extraordinarily vitriolic terms. Participants include the editor of The Lancet, Richard Horton, Roger England, who infuriated many with his “Enough, already” comment about UNAIDS in the BMJ, and a number of AIDS activists. I’ve questioned some of the consequences of activism in my book, but I have to say by far the most sensible comments here come from David Barr, who points out the overwhelmingly positive impact that AIDS activism has had on public health in general.

I myself come in for a bit of stick in this exchange, though largely for things I have never said. I’m curious what the reactions of anyone who has actually read The Wisdom of Whores to this debate might be. So that you can follow the (often shrill) argument more easily, I’ve re-arranged comments in chronological order, so you can read from the top down.

———————————–
On Behalf Of ellen.verheul@WEMOS.NL
Re: CLARIFICATION – Re: notes from SuRG/H8 mtg June10
Dear Sue,
Thanks for your reply. I fully agree with you that it is unacceptable to rob Peter to pay Paul. Unfortunately this is exactly what is happening, as disease specific results are usually achieved by borrowing existing health systems components (most notably staff and staff time). This leads to robbing Peter to pay Paul, by default. I agree we should stop this.
The very idea behind the IHP was to do something about the multitude of specific disease programmes is driving recipient governments insane, while many of the local priorities don’t get funding support at all. This practice should come to an end. We need more ánd more flexible aid; not another increase of earmarked funding. The civil society principles are sending out a dual and conflicting message: yes, more money for primary health care please, but also please increase funding for our priority diseases. We can see what this means this in full swing, in preparation for the aids conference. When a donor increases the level of flexible funding, it is met by a cry that this is robbing from Peter etc, while instead we should welcome this as an effort to pool resources and achieving results for Peter, Paul and Joyce.
What I saw in a public district hospital in Zambia illustrates this point. There are similar stories from other countries. The few available district nurses are sent to training one after the other: to improve their skills to test, treat and council aids patients. They appreciate this, because it enhances their knowledge and they have the opportunity to meet new colleagues. In their hospital they are now able to provide drugs for free to aids patients, they can spend time to council patients (30 min, much more than they were used to spend on any patient), the aids clinic is nicely painted, the lab is functioning, and they receive extra allowances to top up their meagre salaries. They feel rewarded and their job satisfaction has increased: they are now able to properly treat patients who they could previously not. The aids patients feel encouraged. They get a sense of their right to proper treatment and they start demand these rights. It seems that this disease specific programme is strengthening the local system.
The other patients are waiting in a longer queue, for staff that has less time available because of the additional tasks, and the time spent per patient is very short. They still have to pay for the drugs they are prescribed. The ward is not painted. The nurses are not paid incentives for these ‘regular’ clinics and they treat the patients less friendly. They realise this, and feel guilty about it. But they feel exhausted. Aids treatment coverage is going up, while vaccination rates are going down. The woman in child labour, the child with pneumonia, the aids patient with a broken leg: they don’t get the care they are entitled to. In fact, they are worse off as there is less time available and they are now seen as second-class patients. And the situation is getting worse, as aids organisations are recruiting staff from the public sector and from the private for profit sector, to run the aids clinics outside of the public sector. They find the staff, because they pay higher salaries and offer better working conditions, leaving the public sector behind.
My question is: who is Peter and who is Paul?
I wish that IHP civil society principles could unambiguously speak about health, health services and strengthening health systems so they respond to local communities’ health needs.
I don’t believe in civil society principles that include language that legitimises the call for extra disease specific funding. Disease specific programmes are usually not accountable to the rights of other patients. If disease priorities are to be set, it is by the local community, not by donors. I think IHP should be very clear and outspoken about that.
Warm regards Ellen Verheul Wemos
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On Tue, Jun 17, 2008 at 6:46 PM, Gorik Ooms Dear Ellen,
Your message makes me feel very sad, and a bit angry. Your implicit accusation to AIDS activists, that because of their work other patients have become ‘second class’ patients is unfair, and not supported by evidence.
Why do you think DfID announced its £6 billion commitment over seven years for health systems and services as part of its revised AIDS strategy? The IHP and all the annoucements around it provided plenty occasions to make this commitment public. Why did DfID want to use ‘universal access to AIDS treatment’ as the platform to announce this?
First, because as soon as one donor government increases its commitment to fight AIDS, you have AIDS activists all over the world calculating how much their own government should contribute, to ‘measure up’. PEPFAR 2 will contribute US$10 billion per year? Let’s see, the USA has a GDP of US$12 trillion, the UK has a GDP of US$2 trillion, therefor DfID should contribute at least US$1.6 billion per year. Oops, the UK contribution to the Global Fund is insufficient. So let’s throw in the commitment for health systems and services, and hope that AIDS activists will accept it as a contribution to fight AIDS.
Second, the unpainted ward, the insufficient and demotivated health workers facing too long queues, the empty pharmacies, all existed before AIDS treatment started. And no donor really gave a damn. Too much foreign assistance would only create aid-dependency, wouldn’t it? Too much reliance on foreign assistance would not be ‘sustainable’, or would it? It is the global AIDS response that made people realise how unacceptable this situation is, and how stupid the ‘development’ paradigm is. That’s why there is a certain logic and honesty in including this commitment to health systems and services in a revised AIDS strategy: without the global AIDS response, this commitment would not have existed.
The global AIDS response is the locomotive that drives the comprehensive primary health care train. You can be bitter about that, you can complain: ‘Why did nobody listen to us, when we demanded more investments in health systems and services?’ Sure, it is unfair. But it’s reality. DfID did not listen to you, but it was forced to listen to AIDS activists.
We have a unique opportunity here to transform the fight against AIDS into a fight for comprehensive primary health care. Blaming AIDS activists for turning people who don’t have AIDS into ‘second class’ patients doesn’t help. Please don’t bomb the locomotive.
Take care,
Gorik
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On Behalf Of Roger England Sent: Tuesday, June 17, 2008 4:28 PM
Gregg and others
I agree with Richard here. Not your best speech.
There’s a lot of truth in most of the views being expressed just now – on all sides of the debate.
On the one hand, HIV has taken more than its due share of resources. FACT. See attached.
On the other, the rich world should make much more money available for health care in poor countries if we are going to see big improvements in health resulting from stupid and miserable conditions. This could be a FACT and is more likely to be if we can show that we can spend it well. In my view we have not done this yet partly because we have put one disease above all others and convinced the world to treat it as something more special than it is.
Those of us who have worked in health for a long time have not fought as successfully for funding as activists have for HIV. FACT. Well done. And if you are now going to put those talents to use across the health board, who could resist?
There’s a lot in common amongst us all. And it’s time to build on this, as you and I have discussed privately. But we all have to give each other some respect – none of us are in it for the money!
It is vital that we all think seriously about where we go from here, try to put our egos and vendettas aside, and see what common ground we have. There are two broad futures. One is that the world will soon have enough of HIV activists and there will be a backlash against HIV funding that may drag other funding down with it. The other is that HIV activists will be seen as a leading part of a new international movement for effective health funding that shows results for all those in need. What’s it to be?
Regards.
Roge
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On 6/17/08 2:32 PM, “Horton, Richard (ELS-CAM)” Hey Gregg – I probably should let your email pass and not be provoked…but look, this is a debate we MUST have. It is reaching a crescendo and we need to face up to it. But please – this debate is more than you present it. DFID, WHO, UNAIDS, UNICEF, WB, and Gates are all complex organisations. They can’t be reduced to a single view. They are full of attitudes competing for priority. Slamming those organisations as if they are the caricatures you describe doesn’t serve anybody’s best interests.
For me:
1. I am not saying do less with less. I am arguing do more with more, side by side with you.
2. I am not blaming anybody, least of all the AIDS community. Far from it – I cite the AIDS community, together with others, as examples of how civil society movements can change society.
3. But I am putting The Lancet – or trying to, although I’ll be the first to admit my/our imperfections – in the frontline to fight for EVERYBODY, not only those living with AIDS. Travel in Africa, Asia, or Latin America and it’s so clearly obvious that AIDS is one important component of many important components. I wish we could display a little more solidarity across sectors, diseases, illnesses – for children, women, mothers, those with NCDs, mental ill-health, and so on. Not pitting one disease against another – as so many say now, campaigning vertically perhaps, but spending horizontally.
4. Please represent what we say in its totality and accurately Gregg.
For our part – and we are only one small voice in all this – we are launching a report on HIV prevention in Mexico. So please don’t say that somehow I am against the AIDS community. You insult us and those who work with us. And that serves only our REAL enemies – and there remain many.
Richard
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Sent: Tue Jun 17 19:05: Subject: Pitting AIDS Against Primary Care–Your Legacy?
Dear Gorik– It’s good to have Ellen’s views out in the open. I’ve cc-ed a lot of people on this, since many of them hold these views in private and don’t have the courage to face us, to talk to us, to debate us on the issues. It’s time to call them out. Frankly, these opinions are the new conventional wisdom that holds sway at DfiD, makes it into the Economist and Financial Times, it’s what editors of major journals now espouse, what the “thought leaders” insist upon: AIDS has gotten too much money, too much attention, all based on falsified data or the screaming of AIDS activists. Furthermore, this money is ill-spent, either in totality because it distorts health systems or based on supposedly erroneous epidemiological assumptions. Roger England, Richard Horton, Jim Chin, Stewart Tyson, Elizabeth Pisani all make these kinds of arguments, all taken at face value and really not challenged at all yet on their evidentiary basis. NO ONE AMONG THE NEW CRITICS OF HIV/AIDS HAS EVER SAID THAT “HEALTH FOR ALL” WAS A JOKE IN INTERNATIONAL HEALTH CIRCLES UNTIL AIDS CAME ALONG. Our esteemed colleagues at bilateral agencies, in governments, have underfunded health as a matter of principle for decades, telling patients in developing countries that they needed to settle for “the cost-effective intervention” and wait for a the next millennium to have what they take for granted–ready access to comprehensive primary care for themselves and their families. Technical agencies like the Bank and WHO promoted selective primary care–DOING LESS WITH LESS–as the Malthusian option because they answer to countries who don’t want to pay for more. Then AIDS activists came along and said, wait a minute–why should we in Zambia, or South Africa die of a disease that is a chronic manageable condition in the UK, in the USA, in the Netherlands? We raised the stakes higher in international health than they’ve ever been, drove more funding into the field than there has been in decades. Most of us also have fought for primary care/health systems strengthening for decades too–most AIDS activists I know have pushed for national health care in the USA since the 1980s, a real “people’s health service” in South Africa and elsewhere, and have strong links with other health activists. What Ellen fails to recognize is that SHE AND HER COLLEAGUES HAVE FAILED FOR DECADES TO GET ATTENTION FOR HEALTH ISSUES IN DEVELOPING COUNTRIES AND ARE NOW BLAMING US FOR THEIR FAILURES. We won’t go back though to the days when DfiD argued as they did in that ARVs were not sustainable, cost effective, or what now Mead Over likes to call an entitlement (please take that man’s health insurance away and see what he thinks about his own entitlement). We want comprehensive primary care, which means full funding for health–not chopping up the AIDS pie so we can smooth out inequities rather than confronting the absolute parsimony of our leaders when confronted with the truly minuscule percentages of GDPs that we’re asking for, for 0.7% or 1% of massive budgets from OECD nations, or 15% from developing countries themselves. With NO NEW MONEY FROM governments, what we are being asked to do is to FIGHT FOR CRUMBS FROM THE TABLE. We won’t do it. Now let’s talk about the other “critiques” of AIDS–the UNAIDS inflates the numbers or there is no generalized epidemic from Chin and Pisani. Attributing a scheming intelligence to UNAIDS that has twisted the data for political purposes gives the agency too much credit–perhaps we are working with weak estimates because we have very little data on the ground in most countries. Furthermore, how many people have to be infected for the AIDS epidemic to rise to a level of seriousness in James Chin’s book? No generalized epidemic? Dear Dr. Pisani, please come to Africa where we can discuss this in the communities in which we work. As for the notion that anyone believes that we don’t have concentrated epidemics in most other places is setting up straw men–we know the epidemic is concentrated in most other regions in gay men, in drug users, sex workers, women…how about criticising the fact that we can’t get Russia to legalize methadone, the USA to fund needle exchange, most countries to decriminalize gay sex and sex work, protect women from rape rather than piling it on the “AIDS establishment”–because in the end all you do is pile it on the vulnerable groups you say that we should be focusing our attention on? Gorik–I can work in partnership, I can work in coalition, I can and have worked to promote healthcare for people for almost 20 years. I DON’T HEAR ANYTHING CONSTRUCTIVE IN ENGLAND OR TYSON’S CALLS TO ABOLISH UNAIDS, HORTON’S CLAIM THAT AIDS IS FUNDED AT THE LEVEL IT IS BECAUSE WE SCREAM TOO MUCH, CHIN’S NOTION THAT UNAIDS LIES ABOUT THE DATA, OR PISANI’S IDEA THAT WE’RE PEDDLING THE IDEA OF AIDS AS PRACTICALLY BIRD FLU. I am tired of it. So, ELLEN. STEWART. ROGER. RICHARD. JAMES. ELIZABETH. Get on board. We’re fighting for health care–the kind that Europeans take for granted–where you can get WHATEVER YOU NEED FREE AT POINT OF SERVICE. We’re fighting to get rich countries to PAY THEIR FAIR SHARE. We’re fighting for poor countries to stop paying for Mercedes-Benzes for ministers and devote at least 15% of their budgets to health. We’re fighting for patients to have a voice–all patients, not just people with AIDS, but we’re not interested in shutting anyone up. We’re interested in being at the table when decisions about our lives are made–not leaving the decisions up to men on Palace Street, in Washington DC, in Berkeley, or wherever else you lurk–”the experts” who now feature themselves as the guardians of public health and the poor but ABSOLUTE FUCKED UP and let the AIDS epidemic rage out of control for years before doing a god-damn thing and spent their time before that watching health systems crumble into dust since Alma Ata. We’re fighting for the sex workers, the drug users, the gay men, the poor, the women that were less important than your careers, because if they were important to you, you’d have been writing books about them, talking to the Economist, the Financial Times, about them a long, long time ago. You know we’ve been having interesting debates among ourselves about how to build a movement for health for all–but all I hear from “the experts” is about tearing down, settling scores, getting even with AIDS…it sounds like bitterness, vindictiveness, sounds like going back to the bad, old days, because, you know, well, these guys sort of liked the past–at least the dying had the courtesy then not to make too much noise as they went to their graves. Gregg
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Dear Gregg, David, Konstantin, Lydia, and others
I think we need to distinguish between disease specific funding and disease specific programmes. The latter can be effective, depending on the type of programme, the specific context etc. For aids, the general acknowledgment is that without improving the system, it is difficult to make further progress. The level and speed of integration (needed to make disease specific results sustainable) into the broader health system, will probably depend on what is locally feasible. But is it integration that we are looking for, or is this issue in fact dividing this IHP group?
The other questions is whether maintaining disease specific funding is the most effective way to enhance integration, promote synergies etc. I think not. But that does not mean I propose going back to the ‘bad old days’ of health reforms, as Gregg believes. These reforms failed because of a dramatic lack of funding and because of a focus on building structures rather than delivering services. This should not happen again. So this round should be on delivery and on adequate funding, ensuring that services are responsive to local needs. Local communities should be engaged, informed about their rights and holding local providers to account. That does not necessarily have to take the form of a fight; sometimes dialogue is as effective. Dialogue and improved understanding can also lead to local coalitions, strengthening the call for accountability and needs based planning and budgetting from the community upwards to the national level. Uganda is providing an inspiring example that this works. Civil society advocacy, I think, should be about strengthening national systems and checks and balances, making sure everybody gets heard. Especially in the health sector this crucial role of civil society has been weak, with the aidsmovement as an exception. We need CSO action beyond mobilising resources for and providing specific services.
Going back to the funding question: calling for more flexible funding for health does not necessarily imply the premature end of disease specific programmes. Or would it? For how accountable are donors to people and is this a sustainable way forward? More funding is needed, but with less prescriptions.
Ellen
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Van: gregg.gonsalves@gmail.com
Re: ITPC Re: Pitting AIDS Against Primary Care–YourLegacy?
Ellen- When the 3×5 initiative was announced–the WHO’s effort to get 3 million people on ART by 2005–a senior official from a European development agency came up to me and said “I can’t support this, we need to invest in a strictly horizontal approach to health, these stand-alone initiatives never work, or they only work for a while.” He was making a similar case to Roger, to you, that this earmarking for AIDS is wrong, was wrong. Well, we now have 3 million people on ARVs and to make it a sustainable success we need to invest in strengthening primary care overall, and it’s something we all can support. But if we never fought for 3×5 it is not as if the world would have resounded with the clear and loud call for primary health care for all. In fact, what the experts and world leaders have bought into for many decades is selective primary care–doing less with less, for making small and scattered investments in health. AIDS has changed that equation has explicit said we want more even if it costs more. You may feel now is the time to put everything into one basket for health funding that the time for vertical, stand-alone initiatives is now. I would suggest that we need a mix of different kinds of financial architectures to support health in the short-term, while we push towards full funding for comprehensive primary care in the long term. This means maintaining some “verticality” for AIDS, for TB, malaria and other major conditions over the short term in order to consolidate our gains, or at least not reverse them, with an explicit commitment to strengthen health systems and integrate programmes now, with strong civil society oversight and participation and transparency from donors and governments. I am not sure your fondness for the traditional way of doing things–let’s go horizontal now all-the-way because that’s what is supposed to work, though it never did–is going to give you the end results you want, that we all want. In fact, the danger is that we can “cut AIDS down to size” and we may end up simply getting disinvestments in health as you get the most effective activists to leave the debate, or more broadly distributed under-investments in health, with less engagement of communities, less transparency, and less effectiveness. We all agree with comprehensive, primary care for all as our goal. Not sure your “shock therapy” and Roger’s–instituting purely horizontal financing and programming immediately is a wise choice. Perhaps you and Roger can explain to me why removing all verticality right now from the system is the best thing to do, and why it won’t hurt people with HIV, with TB, etc…why wouldn’t a gradualist approach work or do less harm? G
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On 6/22/08 3:28 PM, “David Barr” I fear the tone of this exchange will hinder further dialogue. I feel there are some missing pieces in the way the response to HIV is characterized in Mr. England’s piece and some of the other comments. I agree with most of what Gregg said last week and I share some of his anger. But I think that the expression of that anger might not be strategic at this point and good strategy should trump catharsis at this point.
First, the short piece that Mr. England attached to his message seems a bit disingenuous or at least incomplete. While he states that AIDS has captured funds that might have been allocated for other health needs, his calculations don’t include what he thinks should have been spent on HIV over that time period. This would change the degree of alleged misappropriation between HIV and non-HIV funds.
I am sure he has an answer to this. Ultimately, I don’t think it matters. I think he is missing the point. I don’t know Roger England. He states he has been involved in public health for some time. I imagine he has an impressive resume. But I don’t know who he is representing in this discussion. In his piece, he refers to himself as a “we” that might be “surprised” by AIDS activists. I don’t know who the “we” is. I do know who the AIDS activists are.
At the recent HIV Implementers conference in Kampala, Daniel Low Beer presented data on the impact of HIV response in Uganda from the 1980′s and 1990′s. He showed how a key factor in the success of reduced infection rates was the ability of affected communities to engage in information sharing, support and health programs. He showed that in addition to the important, essential contributions of aid and increased health services; that link with affected communities, which by its nature took place at grassroots levels, was a key element to success. Throughout the conference, the buzzword was “engagement”. We heard numerous examples of methods undertaken to engage affected individuals and communities to utilize prevention, testing, and care services.
If one primary challenge to any public health intervention is securing the engagement of affected populations to become educated, change behavior, utilize health services, etc, then the HIV response is probably the greatest example of success in the history of public health. It is a history of engagement by people faced with a health threat demanding care. And, when such care was not provided, they created it themselves. Is there a more poignant example of community engagement in health than HIV? Is the social capital created through AIDS over the past 30 years part of Mr. England’s calculations on the impact of HIV response on health systems? I think not. At worst, his rhetoric reeks of scorn and disdain for this work. At best, he shows a lack of understanding of it. And England’s lack of understand or, at least, his lack of respect of this heroic work, sits at the core of Gregg’s anger.
We really need to understand the history of the AIDS response. It was not a response of the public health establishment rising to a challenge of a new disease. AIDS is exceptional not because of the means of transmission and course of the syndrome (though these are important factors). Rather, it is the response to HIV by those immediately affected that makes it extremely exceptional. The public health establishment and government has been and continues to be dragged into AIDS at every step. And at the center of those doing the dragging are people living with HIV. GIPA is NOT a politically-correct, feel good notion. Apart from drug discovery, GIPA lives at the heart of most of what has gone right in AIDS since the start of the epidemic. The list of accomplishments is too long to detail here but they include:
• The development of home-based care models
• The creation of safer sex prevention strategies including condom use
• The creation of syringe exchange
• An overhaul of drug development practices in the United States leading to drug approval times cut by 50%
• Opportunistic infection prophylaxis
• The creation of the Global Fund and a multilateral commitment to provide HIV treatment to all who need it – probably the greatest public health experiment in any of our lifetimes.
This is NOT only a Western-based response and to say so disregards the crucial work of hundreds, if not thousands of organizations working in their own ways with meager funding that have changed the course of HIV in their countries and the world. A very short list includes:
• TASO (Uganda)
• Thai Drug Users Network
• All Ukrainian Network of People Living with AIDS
• Treatment Action Campaign (South Africa)
• Front AIDS (Russia)
• Grupo Pela Vida (Brazil)
• AIDS Care China
• Blue Diamond Society (Nepal)
• Nava Kiran Plus (Nepal)
• Manipur Network of People Living with AIDS
• Bali Plus
• Vivo Positivo (Chile)
• Agua Buena Human Rights (Costa Rica)
• Associacion Lutte Contre Sida (Moracco)
• Treatment Action Movement (Nigeria)
• RIP+ (Cote d’Ivoire)

The list goes on and on. And, we must add to it the most important component – the independent actions taken by individuals and communities to overcome significant, life-threatening obstacles to demand care and to support one another. The stories of people stepping forward to declare their HIV status so they can receive care are endless. These stories include people being stoned, shot and burned to death, imprisoned, shunned by family and community. Yet, despite this challenges, people came and continue to come forward – to demand health care. In so many cases, these are people who are considered garbage by their governments and society – drug users, gay men, sex workers, poor women. And yet, they step up. Isn’t this exactly what anyone interested in public health dreams of – this level of engagement in health?
The public health establishment did not and cannot create such a level of engagement. It occurs. And when it occurs, you should invest in it, nurture it and let it grow. Increasingly, AIDS activists are TB activists. They are activists for sexual and reproductive health. They are advocates for food security, for housing, for transparent governance, for human rights. For reasons I won’t go into here, history shows that empowerment theory is a particularly potent force in the response to AIDS. The social capital we create is enormous, but omitted from Mr. England’s calculations. Why? He cannot deny our history because he doesn’t know how to turn it into a dollar amount or regardless of whether it is quantified or not in his journal of choice.
If AIDS advocates have succeeded in securing funding, we have done so as people directly affected by AIDS. Our success is an example of community mobilization for health, not advocacy by a “special interest group”. So, when we are characterized as “HIV protagonists” who are not committed to health generally, it makes us crazy. We didn’t get into this because we “favored” one disease over another. We didn’t get into to create a funding stream. We got into it because we have immediate needs for health care and our governments were not and are not meeting those needs. We are and have always been demanding health care. We did not and do not advocate for vertical systems or horizontal systems – we advocate for our lives. (That is who the AIDS activists are in this debate. I don’t know who Mr. England is.) And we worked to build programs that meet those needs.
The funding allocation issues are real. The need to support improved and sustained health care systems is crucial. How do we do it? At the Implementers Conference, David Wilson from the World Bank discussed the funding allocation issues in a very rational way and we should build our discussion from those remarks. I think there is much on which we can agree. Here is a very partial list. First, we all agree that health care needs more funding. Second, we can use our HIV funding more effectively. Third, criticizing UNAIDS is like shooting fish in a barrel and anyone can do it. Fourth, we can probably agree that there are places in the world that receive a disproportionate amount of HIV funding to need and places that do not receive sufficient HIV funding. Fourth, whatever one’s opinion on generalized epidemics, we should be focusing our efforts on affected communities. Fifth, providing quality health care to all is the primary goal. Sixth, political will remains the primary obstacle to achieving this goal.
David Barr
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Van: roger.england@healthsystemsworkshop.org Verzonden op: 23 juni 2008
David
I agree with everything in your last paragraph, but it has not been my experience that the whole HIV movement has had primary care at heart from the beginning otherwise it would not have tolerated the weakening effect that dedicated HIV money has had on routine health services by creating two tier quality, free drugs for HIV but not for other diseases, and attracting staff from other important areas of care, management and research. I think it has been a relatively recent realisation by many that we are not going to succeed in HIV services if we don’t have the primary care systems. There may be exceptions but they have not been as active in promoting this as they have been in promoting HIV. You say that HIV activists are also activists for reproductive health, but I have not heard the cries of indignation as FP/RH budgets have been decimated in favour of HIV. http://www.populationaction.org/Issues/U.S._Policies/FPRH/Summary.shtml
Some HIV money is beginning to be spent differently as countries try to use it to strengthen health systems – but this remains very difficult because of the strings attached to GF, PEPFAR and other dedicated money, and it would be infinitely better to have money for health systems in the first place. But let’s be honest: we wanted new money spent on ART, and the fact that countries might not have spent extra money on ART but on things that saved even more lives would not have been to our liking, would it?
Gregg’s answer to this is that we need more money for health, not less for HIV. But my argument is that we are not going to get a lot more money for health unless we can show we will spend it wisely and, amongst other things, that means spending a sensible proportion on HIV. What are we hearing instead? UNAIDS wants $42 billion a year for HIV alone which means effectively $36 billion in aid which is three times the whole health aid budget.
I am signing off from this wide circulation now – taking Gorik’s advice! I have been debating with Gregg and Gorik privately and am happy to continue talking about numbers or specifics on a one to one basis without bothering everyone else.
Regards
Roge
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On Mon, Jun 23, 2008 at 12:14 PM, I don’t think it is a good idea if anyone leaves this discussion, for it needs to move. To me the ethical and emotional sides are as important as the technical one on facts, figures etc. They are sometimes mixing up into something explosive. But it also brings us to the core of the disagreement.
When it comes to ethics: I think everybody would agree with the notion that people on aids treatment are supposed to be on treatment also in the future. I don’t think anyone ever did a proposal to take people off treatment in this debate. But the right to health applies to all people, regardless of what disease they suffer from. Pointing at the rights of pregnant women or children with a broken leg, does not equals ignoring or even denying aids patients’ rights, although this is sometimes suggested. No matter how hard I try, it does not make sense to me to say or suggest that any group of patients should wait until the rights of other groups are fulfilled. I hope that we can genuinly agree on this issue of equal rights, and feel responsible for the rights of different patients even if we focus our attention on one group. When it comes to money and funding: if we have the ideal world that we are all fighting for, then yes, there would be enough funding available for proper health care for all. But before we get there, decisions on allocation and priorities still have to be made. Apart from the question how we increase the pie for health, we thus cannot ignore the allocation question. This is painfull by definition, but emotional arguments are not sufficient. What criteria do we apply? Pretending there are no governments and donors with their particular agenda’s that may not be trusted, just human rights arguments: how would we do this? How do we ensure that investmenst made have the most lasting results? How do we ensure that allocation is enhancing equity and justice? How do we prevent retrogression for any patient? Who should have a say: those that are organised and have a strong voice, or also those still voiceless? For me, these decisions should be made at local level, based on local needs and opportunities. If we want to avoid setting priorities for others by telling donors to earmark in advance, then we are overruling local decision making and priority setting. We are also making the quest for synergies more difficult by putting fences in between. I think this is not acceptable. Therefore I support a call for more money for health, which could be earmarked if we don’t trust governments to make wise decisions, but for health, not for separate diseases.
Ellen