Document:McNeil interviews Farber
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Normally, when someone researches and writes about a topic obsessively for over twenty years, he or she is considered an expert. But Celia Farber’s “obsession” with AIDS has been unfairly characterized as an eccentricity by a more-dilletantish mainstream press.
Things changed when Lewis Lapham published her 15-page article, “Out of Control: AIDS and the Corruption of Medical Science,” in the March issue of Harper’s, his last as editor. Rodger Hodge, Lapham’s successor, told the New York Times, “The fact that she’s been covering this story does not make her a crackpot – it makes her a journalist. She’s a courageous journalist, I believe, because she’s covered the story at great personal cost.”
So what about her reporting would make anyone think she’s a “crackpot”? Well, where to begin? In the Harper’s feature alone she cites a high rate of HIV false-positives (as many as one in four) testing pregnant women, questions the effectiveness of antiretroviral drugs, suggests a pharmaceutical conspiracy comparable to The Constant Gardner, and interviews a doctor who believes HIV alone may not cause AIDS.
This summer, Melville House published a collection of her reports, Serious Adverse Events: An Uncensored History of AIDS. I talked to Farber by phone and asked her about the book and its unavoidable controversy.
Q: You are constantly described as an AIDS dissident that does not believe HIV causes AIDS – but nowhere in your book is this explicitly stated. So how would you describe your views?
A: Thank you for noticing that critical detail. I have never written that HIV does not cause AIDS. I don’t think I’ve ever said that HIV does not cause AIDS. I took one semester of journalism in college. The first thing one is taught is to answer the question: what happened? What happened in 1987 was that a top virologist – Peter Duesberg – published a paper in which he argued that HIV was not the cause of AIDS. That was the news event that I reported on. It was my second column in Spin magazine. It came out in 1988. It immediately became clear to me that interviewing Peter Duesberg, who argued HIV does not cause AIDS could not and would not be distinguished from the writer saying HIV does not cause AIDS. Because the stance then and now of mass media was that to interview Duesberg, to describe what he was saying, was exactly tantamount to endorsing him and agreeing with him.
It is not for me to say as a journalist – as a nonscientist – what causes or doesn’t cause AIDS. But it is for me to say as a journalist what’s going on the landscape of AIDS dialectic. And this was a huge event on the landscape.
Q: As someone without a science background are there times you feel overwhelmed by the data?
A: What I feel overwhelmed by is actually not the “science” so much as the politics of the science and the sociology of the science... Scientific data doesn’t come alive until the people who are fighting for it come into focus. I always relied very much on the old-fashion techniques of making sure I got into the room with the scientist or the doctor in question – so that I could hear the voice, see the face, see the facial expressions. Really pick up – with a receptive satellite dish – all the things going on – and what they really meant to say.
Q: The nature of journalism is that you are reporting on a deadline and looking for good quotes. It is easy to see how science journalism can turn out like a game of telephone.
A: It is disembodied from the human, the emotional, the psychic and social context in which someone is speaking to you... It’s so sterile. As I look back on years and years of interviews, I remember the emotion. Of course the data is embodied in the emotions and vice versa – but when I read straight, respectable, kosher, approved science journalism, I can’t connect to it. I don’t know how the interviewer feels or the interviewee feels. It’s very gee-whiz: “Gee-whiz: scientists have discovered x, y, z.” Or a gene that causes this and causes that... In most cases, what it should say is X scientist, working for X interest, totally governed by X biases said to me on this date that X is true, but all of those are leaps that shouldn’t be taken quite so easily.
Q: Do you wish you had taken a different approach reporting? Is there anything you would have done differently?
A: That’s a good question. I am asked often, if I had known what the cost would be to my life and my career, would I nonetheless have done it? My quick answer is usually yes, of course. But it’s unanswerable... What I wish I had done differently, in retrospect, was to calculate the damage and the blight, both on myself and on my family and ask myself, “Is it fair to do to others?” Because what you actually do is you invite financial ruin.
I wish that I had found a way to keep the storm at bay – keep it from totally shattering the vessel that is my life, for I am also responsible for my son and making sure he has a sort of sane ordered life. He’s had a mother since he was three-months-old who is under extreme attack including a federal court trial that was very much about the AIDS column. Strictly for his sake, I’m almost prepared to say I wish I never got involved in any of it. But for the sake of the story itself, which absolutely had to be told, I’m very glad I did it and very proud to have been involved in it.
[The federal court case was a sexual harassment trial against Farber’s then-employer Bob Guccione, Jr. at Spin Magazine (with whom she once had a relationship). Farber said in the interview, "I can exactly see why they would think that and why they would jump to those conclusions that that was how I got my job, but I dare say that if my work had not been covering the dissidents’ side of the AIDS debate, it wouldn’t have happened." She wrote about this experience in Salon, after a jury rejected the charges.]
Q: As a non-gay male AIDS reporter and Westerner investigating Africa, did you have to deal with identity politics?
A: I never got that kind of guff from any Africans, [but] certainly from the gay community. Those that were opposed to what I was doing – that was one of the charges: that I wasn’t gay and how the hell could I know what I was doing and what right did I have to say anything? But that’s inconsistent with the core belief system, which is that AIDS is everybody’s disease, and everyone should react, and everyone should care, and everyone should have compassion. But we did! We cared like hell! Bob and I were alone in that. I remember Bob used to say AIDS was the Vietnam of our generation. We started the AIDS column because we felt it was our problem.
I wasn’t one of those intrepid dissidents who never wavered and never broke down. I was breaking down all of the time. I would go to AIDS conferences and go through an immense crisis each time, “Am I crazy or are they crazy?” And since there are far more of them I figured I was crazy. So then I would go back to the data and the story, and the interviews and just keep beating and beating and beating – in a way try to pull myself to a place where the story looked different: where the conclusions were different, where I could get across that bridge of respectability where they all were saying all that the evidence is overwhelming that HIV causes AIDS and so on.
When I was much younger I really wanted to get there. But I could only get there on a bridge built on evidence. And evidence included people, voices, and testimony. My bridge took me consistently to this other place. The real, uber-question is: do we as human beings only build these bridges out of material that will in some way vindicate what we already believe? And what we already staked our reputations on? I hope that’s not the case. I work really hard at seeing clearly. I can say categorically that I’ve lived through so many years that some of the huge questions we put out have since born out that we were correct and they just don’t talk about them any more.
Q: Could you give an example?
A: Chief among them is that there was going to be an explosion of heterosexual AIDS spread by unprotected sexual encounters.
Q: In the book you compare that to Y2K.
A: Well, it’s as nonexistent. It did not happen as much as Y2K did not happen. It was a classic mass panic. There is nobody on the orthodox side who with a straight face can say, “Yes, our vision of heterosexual AIDS bore through.” If you notice what they said – Tony Fauci, Matilda Krim, Life magazine, Oprah Winfrey – this is just one statistic to give you a sense of the scale of what we are talking about: seventy million Americans were supposed to be dead from AIDS by 1990. The heterosexual spread we all agree did not happen.
[Another example is AZT.] At the time, the FDA agreed to approve it after only 17 weeks of testing [without any of the standard procedures that used to take up to 10 years]. And it flooded the community. Our side says AZT was a catastrophe; AZT killed a generation of AIDS patients. There are orthodox doctors who say that, there are gay activists who silently concede that... To be more concrete, I lived through and reported very carefully about that story and I have a few gay friends who were around then who are still alive today and simply put, they say, categorically, everybody who went on AZT in the early years died. It is the most toxic drug ever approved for human use. It is DNA-terminating chemotherapy that kills all categories of cells. And high doses especially were un-survivable – most people died around nine months, a max two years.
Of course [ACT UP and other activist groups] meant well! Of course they wanted to save their loved ones and brothers! Of course they didn’t know! But it was a disaster and we have to face it. The really weird thing about this whole thing is if you got on the phone with one of them, they would say people like me are responsible for mass deaths for planting the notion that HIV does not cause AIDS – which we discussed at the beginning – and for scaring people away from antiretrovirals. All I can say is only data speaks.
[Farber begins to read from an Aug. 5 Lancet article, “HIV treatment response and prognosis in Europe and North America in the first decade of highly active antiretroviral therapy: a collaborative analysis” (it looks at 20,000 patients in Europe and North America on cocktail therapy, also known as HAART therapy). “Virological response after starting HAART improved over calendar years, but such improvements has not translated into a decrease in mortality since 1996” (the year these drugs were launched).]
AIDS is immune deficiency. AIDS is immune collapse. There are many roads that lead to Rome; there are many roads that lead to immune collapse. What we were saying about AZT in the early years is that, for god’s sake, this is a chemotherapeutic agent – an old cancer drug from the '60s that was shelved as too toxic for human use. Chemotherapy obliterates the immune system. AIDS is a disease described as obliteration of the immune system caused by a virus. Protease inhibitors are a different kettle of fish. While they also greatly undermine the immune system they also weren’t total killers like AZT. They didn’t just mass destroy the cells; they brought some benefit as well. They’re broad-spectrum microbials. They did clear up infections and they absolutely did bring people back from the precipice of death. But what I just told you about is a ten-year perspective study. And when they looked over those ten years the utopian dream did not pan out. Their HIV levels are going down, whoop-dee-doo, but they are not living longer. It’s a very strange position to be in. Those of us on the skeptical side have never been more right but we have never been more hated.
Q: Are there any medicines you see as beneficial?
A: I always want to pull back so I don’t start sounding like a self-declared doctor...but if I had to commit to a causation camp, I would be some kind of multi-factorialist. What that means is AIDS is caused by an assault on the immune system over time from many sources, both chemical, nutritional, psychic, and social. It is always affected by the people pushed out into the margins of society – isolated and alienated.
I am most enthusiastic about the data I’ve seen – and this is mainstream data – about mass nutritional replenishment: limited antibiotic use and basically gradual rebuilding of the immune system. I know countless people for whom that has worked. Now, I don’t mean, you’re not eating your string beans. But if you are exposed to extreme toxic assaults on your body, you will cease to absorb nutrients properly. If we are absorbing nutrients properly, then our bodies are designed to fight infections and to live.
Nutritional answers excite me very much, especially in Africa, where the idea drives most people insane. How can we have a world where the left is opposed to clean water, core nutrition and basic health care to poverty-stricken Africans? It just boggled my mind. If anything, it’s a traditionally left-wing position that people poor, marginalized, and starving are going to get sick – as they always have.
The cocktail era involves mixing and matching all these drugs in infinite combinations to infinitely unknowable results. So the best thing I can say about cocktail therapy is that I do concede it has worked to stop imminent death for those that are very far-gone.
A: Any journalist today who looks at the landscape including science journalism, conferences, the rigging of clinical trials, the cooking of data, the cover-up of deaths – all this stuff, for which there are just reams of evidence – to look at that and to declare fault on the part of those journalists, writers, and filmmakers who decry it: that is denialism. That’s pervasive and severe denialism.
Jon Cohen strikes me as a journalist who has so abjectly identified with the ideological agenda of mainstream medicine and the pharmaceutical industry that he can’t seem to distinguish from what they say and from what he thinks. He’s just the official parakeet.
[Later, Farber e-mails me a link to Jon Cohen’s “repugnant” article in the July 28 issue of Science magazine about recruitment for AIDS vaccine trials in Peru. Cohen reports on a “perplexing epidemiology – the epidemic is concentrated among men who have sex with men.” A “contentious” study will evaluate whether antiretroviral drugs can lower HIV transmission rates if uninfected people take them daily...]
Q: Do you think The Constant Gardner was able to voice political dissent as it is shielded as fiction?
A: I would caution people against assuming that John le Carre is writing fiction. Let me make a generality: fiction writers today like John le Carre are doing journalism, and the journalists are writing fiction.
Q: Who are the writers you most enjoy?
A: I love the South African journalist Rian Milan. Anthony Brink is a personal friend; I think he’s fantastic. He’s another South African. Totally putting aside the war, I do like a lot of what Christopher Hitchens writes. I used to read pretty much everything Hunter Thompson wrote, even at the end, even at his most confused. I read him for the originality of style and language.
[Among] writers who I feel have addressed what is actually the hell going on – Philip Roth. When he wrote Human Stain, I just went crazy. He became a writer of redress. And there was something enormous that needed to be redressed and punctured... And I think Tom Wolfe is nailing a lot of stuff that is important. But we think of these guys as fiction writers.
And John Strausbaugh has just written a book. It’s called Black Like You. Whatever he writes, I read it with interest and relish. I really like Armond White’s film criticism in the New York Press. I really like John Halpern’s theater criticism in the New York Observer. I rarely see movies or plays, but I find their writing, raw and non-compromising.
Q: You’ve listed a couple South African writers. Are they more open to dissenting opinions?
A: South African writers, of course, cut their teeth on apartheid. They cut their teeth on total evil and horror. They aren’t soft like American journalists tend to be...because we’ve never experienced true dictatorship – I mean, true dictatorship – we don’t really have a culture so much of investigate, threatening-to-power-structures journalism. There are so many writers that are clever and have great style, and are biting and witty; but what I look for are writers who are alarmed.
Q: I remember you wrote some thoughtful pieces for Ironminds – one about the decline of courtship that I forwarded to all of my girlfriends – and you've interviewed O.J. Simpson. Do you ever wish you'd pursued lighter topics?
A: Yes, I do. The sad thing is that when I wrote about those other things I got a whiff of what it might be like to be heard and understood and not be in a gulag. I wish that I were not thought of as being obsessed with AIDS. I’d love to write about other things, but I’m not sure I can right now. The Harper’s article, and the phase we’re in – which includes The Constant Gardener – we’re in some kind of civil war and paradigm shift, and I’m caught up in this very powerful wave. There are a lot of things that still have not sorted out but there is a lot of rage and hysteria in the air.
I do wish that I could crawl away, quietly and turn up on some completely other part of the beach. I find it’s hard, because right now I’m so angry and my anger is keeping me from returning to that levity – the voice that I had. There wasn’t levity in the O.J. piece, but there was in that one you just cited – the courtship piece is overwhelmingly the most popular I ever wrote. And I’d like to write more about that but I don’t really know how to get back to that as an identity.
Actually the book that I’m imagining, that I’d like to write next is about very small things. I want to write kind of along the lines of that courtship piece: civility, grace, and manners, and decency – it sounds a bit pious, but I want to do it with variations of people and sort of funny stories over the years. I’m kind of obsessed with language and passive aggressiveness and rudeness – of course I live in New York City. And political correctness brought us to extreme lows of human language and behavior.
So yeah, I want to return to all that stuff, if I can just get off the meat hook here.
© 2006 by Joanne McNeil
Originally published at Bookslut