Document:Kruglinski reviews Farber
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19 October 2006
In the November issue of Discover we reviewed the controversial book Serious Adverse Events: An Uncensored History of AIDS by journalist Celia Farber. Covering the territory of so-called AIDS dissidents – people who question the relationship between HIV and AIDS, the mainstream treatments of the disease, and the scientific establishment's communications about AIDS to the public – Farber has been on the AIDS beat for two decades. In a Web exclusive, Discover editor Susan Kruglinski interviewed Farber.
Q: Your writing is considered controversial. What kind of reaction did you get when you first started writing about this and how has it changed over the last 22 years?
A: My work on this began in 1986. When I started researching AIDS, I was at Spin magazine at the time as a research assistant. We eventually developed a monthly AIDS column called Words From the Front. And that was Bob's idea [Bob Guccione Jr., now CEO of Discover]. He said AIDS is the Vietnam of our generation. The second column was an interview with Dr. Peter Duesberg. At the time we thought we were doing very straightforward journalism, but there was an immediate powerful reaction. We soon were made aware that we had touched across a major taboo. And the taboo was to question any of the orthodox – any of what's called the catechisms of AIDS.
I didn't actually stay on the story like a total obsessive for 22 years. Rather, what happened was I helped birth the story into the mainstream media, and it started to grow and grow and grow and grow. And it just has a life of its own. And that, I guess, was in a sense my original dream.
It's changed in that so much of what the orthodoxy proclaimed has not come true. The paradigm has failed miserably on virtually all counts. So the orthodoxy right now is particularly venomous and vicious against anybody who is what they call an AIDS denialist.
Q: What are the failures of the paradigm?
A: The chief one is what used to be called the heterosexual AIDS explosion, which was the model. It was the core of the HIV theory – that there was a virus that was lethal, that was transmissible via unprotected sexual intercourse, needles, and other methods of transmission—blood-to-blood transmission. What they actually said was that there was a model of tertiary transmission. So anybody who sleeps with anybody who sleeps with anybody who's ever slept with anybody who ever was a drug addict, et cetera. It was a very terrifying model.
And one of the studies that the so-called dissidents have been drawing attention to is a study by a Berkeley researcher named Nancy Padian. Her study looked at transmission between couples where one was positive and one was negative. They had unprotected sex. They watched them over a period of 10 years. And there was not one single transmission in the whole group [during the 10-year study] – not one. [From the research paper: "Overall, 68 (19%) of the 360 female partners of HlV-infected men (95% confidence interval (Cl) 15.0-23.3%) and two (2.4%) of the 82 male partners of HlV-infected women (95% Cl 0.3-8.5%) were infected... transmission occurred prior to entry in the study... Over time, the authors observed increased condom use (p < 0.001) and no new infections."]
So what does that mean? Well, there's been a ruckus, a wild debate about this all over the Internet. At the very least, it means that the spread of HIV is extremely difficult, which is quite different than the terror, dread, bubonic-plague model we were given. That's just the first piece. The piece that I am most personally alarmed and upset by is the AZT piece of the history. When we were doing our most focused reportage in Spin, it was during the peak of the AZT-mania years. AZT was given in extremely high doses. It is a chemotherapy that was developed in the '60s. Very crude, very toxic – some people say the most toxic drug ever given to human beings. And at the 1800- and 1200-milligram doses that were given in the first few years of the AZT craze, people died very clear AZT deaths. And there were some people around at the time who were saying, "That's AZT killing those people." And most people, by far, were saying, "That's crazy. It's the virus that's killing those people." That was where the first real war lines were drawn over AZT. AZT killed them – not the virus, not the illness, but the drug itself.
So what remains? Their great white hope is the cocktail therapy. And those cocktail therapies, protease inhibitors and so forth, definitely are a vast improvement. They are far less toxic. And, yes indeed, people stopped dying at the same rates they used to be dying. There are also broad-spectrum antibiotics and antimicrobials. So people have indeed been brought back from these complex immune disorders with those drugs.
Q: So you don't feel AZT extended lives? You wouldn't compare it to chemotherapy or radiation therapy, which initially extended lives but had to be modified over time to work better and have fewer toxic side effects?
A: Here's what's strange about AZT's history. On a cellular level, AIDS is the opposite of cancer. Cancer is a proliferation of cells. And AIDS is a decimation of the cellular system. The first drug that was offered was a drug that decimates the cellular system. Why? Why treat an immune suppression with a powerful immunosuppressive drug? It makes sense in cancer. It does not make sense in AIDS. So that is a mystery I cannot answer. I do not think that they [the medical establishment] wanted to kill people. I chalk it down to the terror of the time. The terror of the virus has dissipated greatly. They basically used to say you'd fall down, bubonic-plague style, in the middle of the street. It was an irrational fear, and it was in advance of data. And it was drawing on cohorts of people who were very sick and were dying very fast.
AZT was approved, I think, in 17 weeks. The drug approval process itself was revolutionized to accommodate the approval of this ghastly drug. And that's one of those things that you can't go back from. I am not a believer in rapidly sped up drug-approval processes. But the only idea out there now, in the post-post AZT era, is that faster is better – this whole idea of drugs coming down the pipeline and that it's okay to test drugs in human populations.
Q: Again, you don't believe that AZT extended lives?
Q: Getting back to Nancy Padian, doesn't she feel like you've misquoted her research? Is there any controversy there?
A: Nancy Padian is upset that people like me are quoting her research because she doesn't want her research to be used toward what she calls denialist discussions. But the data is the data. Most people are saying, "Well, it's difficult to transmit." And then you get in to breaking down further into camps. How difficult? Is it impossible? Is it almost impossible?
Q: So do you believe that it's impossible to transmit the disease through sexual contact?
A: I have lived in New York City for the last 20-some years, and I don't know anybody who has acquired HIV through sexual contact. I've interviewed people who are coming at the problem from so many different directions. There are several suppositions that I'm still not finished studying. At the center of all of this is the HIV antibody test. If you look at the HIV antibody test very, very, very carefully, you'll see that it tests for certain proteins that were said to constitute a novel retrovirus. So at the proto-origin of all of this is a question – when we talk about spread, when we talk about Padian – everything we're talking about is through the filter of the test, of what we're seeing through the antibody test. When it comes to the spread of HIV and whether it is possible to spread it sexually, I have to defer back to what I stand for, which is debate and reading and scrutiny, dialogue and discussion and dialectic. And I don't have the answers to many, many questions. Including that one.
I'm not a safe-sex educator and I'm not a public-health advocate. I'm a journalist. So I have to steer myself away from that end of the questions and say, "It's in my work. It's in my book. It's in everything I've ever written." I would like people to read my book and then they will see, in that book, that I am a vessel for all kinds of questions and concerns and anxieties about the data underlying this paradigm. As opposed to a person who dictates what is true, like, "I've figured out what's really going on." I'm like a human question mark.
Q: In the introduction to your book you write that you are not a scientist, that you cannot say what is right and what is wrong, that you are simply presenting the human drama. But aren't you making a statement by covering this controversy over such a long period of time?
A: I think this is the story of the century. And it's a huge story that directly addresses truth in the information age, and how we know what we think we know. And what's the media's role in it? What's the soul of science today in the pharmaceutical age and the biotech age?
Q: But clearly you are affiliated with one side of this story.
A: That's a fair question. In the beginning, I interviewed Peter Duesberg as a straight news story: "Top retrobiologist says HIV doesn't cause AIDS." Let's see what he has to say. When that was published, what happened was I was attacked. And when you get attacked, you have to start to defend why you did what you did. And then you get this compounded – you get a spiral situation. Where you're attacked, you become that much more "zealous" because you're trying to defend your first action, which you thought was straightforward journalism. So you're radicalized by the forces that would have you silenced. What's radical is the act of holding on in light of those attacks. I didn't so much insist on talking to people who didn't think HIV caused AIDS so much as I got knocked into a kind of terra incognito.
Q: Why is this not covered in a mainstream way?
A: Well, Harper's is mainstream, don't you think? ["Out of Control: AIDS and the Corruption of Medical Science" Celia Farber, Harper's Magazine, March 2006]
Q: But you really don't see other journalists covering this.
A: I think you should ask them. I think they know it's a career threat, for one thing. They sense that in their spines.
Q: What about the opinion of the major journals? They seem to have come to a consensus that is opposed to Duesberg and the AIDS dissidents.
A: I know personally dozens of people who have been HIV-positive and perfectly healthy with no drugs, no ARVs [antiretroviral drugs] for over 20 years. They are common. They are not unusual. There are at least 5,000 cases in the literature of full-blown AIDS – that is, immune decimation with no trace of HIV [according to Duesberg]. The orthodoxy has said it may take on average up to 15 years, possibly up to 30, before HIV causes AIDS. That is, to be fair, closer to the dissident position than to the orthodox position, which began 22 years ago saying HIV caused AIDS instantly. So I daresay that their paradigm has been stretched to unrecognizability from its original form.
Q: My uncle had AIDS in the early years, and I disagree that it was presented as an instant killer.
A: What I'm saying is that they handed down a death sentence to the sexually active population of the world, and some people say that they were right to be more draconian and fearful than they needed to be. I've always felt personally that it's a violation to say "I'm going to tell you when you're going to die." And I think this is a very interesting question: How much time did they give people? Did they give them six months, a year, five years? Either way, can't you see that it's arbitrary? They had no knowledge, no right to do that; they should have said, "There's all kinds of things we just don't know." But they never did that; they got into this kind of almost fascist lingua franca, this doctrine.
Q: So you have issues with how the medical field looked at what this disease is, what causes it. And then there's how it should be treated, the pharmaceutical angle. And also how information about the disease was presented to the public by the medical establishment. So what is the larger thing that comes from all of this? What is your thesis regarding the medical community?
A: I feel that what I've arrived at is that in America, during the time of the biotech boom, with the sudden explosive growth of the pharmaceutical industry – and I'm dating this roughly to the eruption of AIDS – medicine and science became co-opted by an almost industrial revolution of financial interest, which clouded the truth and the data and the reality very powerfully and put new fears into the system. It's not all money, but money is a huge part of the story. You have doctors who can barely keep pharmaceutical reps out of their examining rooms while they're examining patients.
And then science itself, I would say, if I had to put it simply, has ceased to covet curiosity. This is what a lot of scientists talk about—that heaven help you if you go against the doctrine of the time. And the doctrine of the time, you will see, almost without fail, is driven by the vested financial interest of the time.
Q: Can you see why a person looking over all of the literature on this from the scientific community would question your point of view?
A: No, because I've never made an argument. Everything I've ever put into print was brick by brick by brick by brick, things that happened, people died, scientists and doctors said X, Y, and Z. The Harper's article opened with the story of Joyce Ann Hafford, who is a black woman in Tennessee who was killed by nevirapine [a drug used to treat HIV-1 infection and AIDS]. Her baby was saved; she was killed. They told her family she had died of AIDS. I was thinking as it went to print, let's see what happens now, let's see if it is seen for what is on the page, or if they still will come at me with what gets called my arguments. I don't make arguments. I report facts, things that happened. It's shoe-leather reportage. And what I would like is for people to look at that and for people to say, "Did she make that up? Did she make this person up?" Well, if she didn't make it up, then indeed we have something to worry about, and it's really not her personality that we need to worry about. It's that we live in a culture where a woman can be killed like a guinea pig. It's what happens when the NIH sponsors this kind of trial and similar trials, where people are dying every single day in human experimentation around the world.
Q: Right, but human experimentation and clinical trials is a whole other issue compared to HIV and AIDS.
A: But do you understand that I've never said HIV doesn't cause AIDS? What I've said is not everybody agrees that HIV causes AIDS. That is an objective description of the landscape of AIDS dialectics.
Q: Some believe that perpetuating so-called AIDS dissident beliefs may be costing lives. Do you believe this could be true?
A: I need to make a very important distinction right away, in order to answer that – it's a distinction of reportage, between what actually happens and what we impose upon what happens. That very core is composed entirely of transparency; that's where reporting begins. In 1987 the nation's top retrovirologist, according to Robert Gallo, Peter Duesberg, published a paper disputing the emerging beliefs that a) retroviruses caused cancer, and b) that a retrovirus was the cause of AIDS. That was, to my ear, news, plain and simple. If your job was to report on the scientific landscape of AIDS, that certainly was an event. Like a giraffe appearing on Wall Street. The unexpected, the anomalous – that is the building material of the writer, in most traditions. You start with a conflict and you seek resolution in order to learn the lesson. A split had taken place, an epic rift in virology, in fact, and I was standing there.
Yes, there is a risk in interviewing people who are "wrong," but there is a perhaps greater risk in not interviewing them because they might be wrong—in surrendering that process to the self-declared authorities, powers that be, industries. It didn't used to be the end of the world in science if somebody was wrong. What we're really looking at here is the death of the scientific process and spirit in a time of great terror. As Charles Stein, the poet, said, "Everything is true by inversion." We must have the courage to look at things from all angles.
You asked: What if the scientists who you have interviewed, who you report on, are wrong? My answer: Then they're wrong. I can't erase them from existence. They are. That's the first thing. What I am saying, in direct answer to your question, is yes, it is possible that the thousands of scientists who oppose the HIV paradigm from many angles are wrong. When I began interviewing these unheard voices, I could not have known whether they were right but rather didn't demand that they prove they were right before I sounded them out. I sounded them out to explore the question, to get to the bottom of it. Two decades later, the question has grown like a vast funnel around the world now, and gets bigger and bigger.
How did Gallo come to stand at that podium? What did he hold up? Was it a retrovirus? Was it the same as [French virologist Luc] Montagnier's? Most importantly, how was the test built? What did it test for? How were those original proteins chosen, and what did they signify? Do they signify the same things today? I have come right up to the edge of the ultimate existential shock, in recent years, studying the micro-facts of the HIV tests, and the history. The shock is: Have we been testing for a piece of ourselves? Something that was always there, in our DNA? What is a "retrovirus"? What is "reverse transcriptase"? Why do the human genome guys say we have 98,000 retroviruses in our genome and why, at AIDS Inc., does no one care about those but only the 98,001st? Duesberg's quip is that on the 98,001st, they hit the jackpot.
Q: What are you planning to write about in the future?
A: I've got two books that I'm writing proposals for that have nothing to do with this. I actually don't want to address what they're about just yet, but I'm moving entirely in the direction of simpler people-based stories. Don't we all want to write about people? I do not have a fetish about science. And I certainly, certainly do not wish to stay on this topic any longer. I feel that I've been somewhat chained to it.
You know, I think this is Thoreau stuff, this is American transcendentalist stuff. It speaks to who are we as a culture. Are we self-defining as a culture? Are we interested in evidence-based reality, or are we swept along by mass fears? I mean, really, this is the stuff of science fiction. This is what science-fiction writers write about. I think the main difference between me and science writers who are more liked, more popular, more palatable, is that I am alarmed. And that is something that is more of the tradition of science-fiction writers that say, Oh my God, our technologies have come to dominate and control us. And that is what I feel that this story is. The technology has come to rule us like it has come alive. But we have misunderstood the technology that we've built.
Q: Do you have any regrets about your career?
A: [Laughter] Not really. I complain a lot, but it's been a fascinating, amazing journey.
© 2006 by Susan Kruglinski
Originally published at Discover