There's a war happening in science but you may not know about it, and it's stranger than most because it is pitting some people with HIV and their loved ones against the scientists and medical community trying to cure it. In other words, it's a war that makes even less sense than most wars.
Did you know there was even a debate about whether or not HIV causes AIDS? I didn't. You might as well have walked up and told me puppies and free money don't cause happiness - I was that shocked - but a debate there is and I learned about it when I read an editorial in PLoS ( Public Library of Science) Medicine titled HIV Denial in the Internet Era. The authors, Tara C. Smith and Steven P. Novella, pull no punches at all. They don't hesitate to lump in HIV/AIDS skeptics with deniers of evolution and the Holocaust. It's powerful stuff and they clearly feel like this issue is too important to remain out of the mainstream cultural debate.
I was intrigued by the editorial because it's rare that scientists invoke the Holocaust and even more rare that you have an important cause where two sides vehemently disagree yet, to an outsider, there doesn't seem to be a villain. In the global warming debate, for example, you can look to Exxon or Environmental Defense as the villain depending on where you stand because there's money involved in both camps.
In the world of HIV research, it's not so clear cut. Doctors and scientists who want to save people with HIV/AIDS can't be the villains. Likewise, people who have HIV/AIDS and are convinced the drugs do more harm than the disease can't be the villains. Drug companies? Perhaps it is possible on a limited scale but most scientists work for little money by choice so greed isn't a big motivator.
Medicine is occasionally art as much as science because there aren't always clear-cut reasons why things happen the way they happen at the cellular level yet society expects decisions today based on data that may be incomplete - lives are quite literally at stake. Understanding that, I set out to discuss the science behind this. I wrote to Dr. Smith and a few of the groups and people mentioned in the editorial and left a general comment on a site critical of the editorial asking for expert input. I did not get a response from Dr. Peter Duesberg, a professor of Molecular and Cell Biology at the University of California, Berkeley and oft-cited source. Nor did I get an answer from Act Up San Francisco or Alive & Well but I did get a response from Dr. Henry H. Bauer, author of The Origin, Persistence And Failings Of HIV/AIDS Theory, who wrote:
Re: the Smith-Novella article in PLoS Medicine, please note that it does not deal with HIV/AIDS science, it deals with issues of dissent from a mainstream consensus, and does so in a sadly misguided and ignorant fashion: the authors are not familiar with standard knowledge in history, philosophy, and sociology of science, in particular as to the role of anomalies and heterodoxy in the progress of science, which happens to be my own academic specialty
Fair enough, but that charge can be levelled against every editorial ever written, especially if you happen not to like it. They are by definition primarily opinion pieces. Yet you don't often get to be a professor of epidemiology or a neurologist at the Yale University School of Medicine without knowing what you are talking about, so even opinion pieces by experts carry real weight. Dr. Bauer is Professor Emeritus of Chemistry & Science Studies at Virginia Polytechnic Institute & State University and also Editor In Chief of Journal of Scientific Exploration, which deals with, among other things, ufology, cryptozoology, and parapsychology, so he's also no stranger to criticism that his writing is sometimes not mainstream hard science.
Criticism of the editorial nature of the PLoS article aside, it makes sense to tackle the subject on its merits. Smith and Novella rightly understand that policy decisions are often based on perception as much as fact, and we agree as well, so it's important that non-experts get a ground-level understanding of the science issues at stake.
In that interest I interviewed Dr. Smith to go beyond the editorial and to try and figure out why there is any debate at all and why they decided to speak out.
Scientific Blogging: The HIV/AIDS denial movement has been around for a while. What made this important enough to address now?
Tara Smith: Like most scientists, I hadn't even realized there was an active denial movement until recently, beginning with the story of Eliza Jane Scovill. As a parent myself, I can only imagine how horrible it must be to lose a child, but it angered me that Maggiore didn't learn anything from her daughter's death--and indeed, continues to actively promote her denialist ideas to other mothers. To someone in public health, that behavior is beyond appalling, and I do think attention needs to be called to this movement, and to science denial more broadly.
Scientific Blogging: Are you concerned that your status in the scientific community legitimizes these denial groups scientifically by addressing them?
Tara Smith: No. Prior to becoming interested in HIV denial, I'd worked for quite awhile battling against evolution deniers in Ohio and Iowa. I'm not inviting anyone to debate me on equal footing; I don't disguise my views on these matters or hide my opinions. I won't legitimize them by inviting them to my university to give a talk or debate in the interest of "fairness." I use my blog site to address these groups because their information is already out there, frequently unchallenged, on the internet.
Scientific Blogging: Disease testing can be confusing to the general population. Critics state that HIV tests are not accurate and they introduce concepts like surrogate markers which will be unknown to most people. Can you provide a short description of how HIV tests are done and their accuracy level?
Tara Smith: Sure. There are two steps to an HIV test. The first will be a screening test, typically an enzyme-linked immunosorbant assay (ELISA). This test looks for antibodies made by the patient that are specific to HIV. I'm skipping a few steps here, but when antibodies are present, the test will change color, and the amount of color change is measured by a machine. Those that are above the cut-off point for the ELISA will then be tested by a second test called a Western blot. In this test, the patient's serum is applied to, essentially, a piece of paper-like membrane with HIV proteins stuck to it. If there are antibodies in the patient's serum, they'll stick to the proteins on the membrane, which will again change color in subsequent steps. It's only when this is positive that an individual is called HIV+. The combination of the two tests has undergone through testing, and are very accurate. (For instance, a 1998 JAMA analysis showed a false positive rate of ~1 in 250,000, or 0.0004%.)
Scientific Blogging: It seems like the debate should be over after answering one question: are there any instances of AIDS without the presence of HIV?
Tara Smith: Well, even that one isn't as straightforward as it may seem. AIDS is now defined in part by the presence of HIV (or antibodies to HIV), so the answer to your question, technically, is that no, there is no AIDS without HIV. However, there are rare cases of T cell depletion in the absence of HIV, from an unknown cause ("idiopathic T cell lymphocytopenia"), which those who deny HIV causation of AIDS try to pass off as "AIDS without HIV."
Scientific Blogging: New laboratory assays can't be created overnight, yet the lack of complete understanding about which part of the T-cell replacement mechanism is wearing out and what is responsible for wiping out the T-cells that disappear seems to be an argument these critics use against the science community. Can you compare the danger of current treatments with the danger of waiting until science is certain what causes T-cell stores to dwindle?
Tara Smith: Well, those studies have been done. We don't need to know all of the details to see if a new treatment is better than doing nothing at all. Immunology has advanced in leaps and bounds over the past 2 decades, and with it our understanding of the biology of HIV, but imagine if we'd sat back for 2 decades and done nothing, waiting for a clearer picture of HIV pathogenesis? Antibiotics were used long before their mechanism was known; mechanisms of aspirin are still being investigated. Knowing more about HIV will hopefully allow us to design better drugs, but in the meantime, we know via clinical trials and epidemiological studies that antiretroviral drugs save lives.
Scientific Blogging: On the ACTUP San Francisco site they paint the HIV/AIDS epidemic as a perceptual one based on a combination of flawed science, alarmist media and anti-sex/anti-gay sentiment. That's brilliant spin on their part because it says if you believe HIV causes AIDS, you either don't know what you are talking about or you dislike gay people. So which are you, uninformed or anti-gay??
Tara Smith: Yes, they've certainly studied their framing, haven't they? Again, you can see how they're setting up something those of us in the mainstream just can't win. What's interesting is that they get all their own information from scientists who study HIV and obviously can't really be uninformed, yet they support the idea that HIV causes AIDS--so they must be anti-gay? Yet they're spending their careers studying a syndrome that disproportionately affects homosexuals in this country, so how does being anti-gay make any sense? That's when they bring out the "greed" issues, suggesting that HIV research is so lucrative and scientists are out for the quick buck. I received one comment that suggested HIV researchers routinely make in the 7 figures.
Scientific Blogging: Critics note that there is no single scientific paper that proves HIV causes AIDS. How is that an issue?
Tara Smith: This is a red herring. There is no "single scientific paper" that "proves" anything. Scientific evidence is gathered over a period of years or decades, experiments are repeated by multiple groups, knowledge is built upon in many dozens or hundreds of papers, until a "cause" is established beyond a reasonable doubt. So by asking for a "single paper," deniers are rigging the game from the start, knowing they can pick holes in that single paper (holes that likely have been filled by subsequent studies) and say, "aha! That paper is the best you can give me, and it didn't prove anything! Your whole paradigm is incorrect." It's just a stunt, essentially.
Scientific Blogging: You used the terms "denier" and "consensus" in your article and those two words have become associated with political fights more than scientific ones. Is there a science debate remaining or is this now more of a political issue?
Tara Smith: There certainly remains much that's unknown about the science of HIV, and there are valid debates in the scientific literature. But no, issue about whether HIV causes AIDS has been settled long ago. It is, in many ways, akin to a political fight, though deniers run the political spectrum. HIV deniers don't have the clout or money behind them that evolution deniers do, but they do have a small core of loud supporters, along with Hollywood director-types who have been cranking out documentaries promoting AIDS misinformation, and "natural health"/vitamin gurus who profit from denial. Maybe "cultural issue" would be a better term than "political" one.
Scientific Blogging: I only found one critique of your article and it didn't address the specifics of what you wrote but instead invoked the scientific 'we should consider all options until eliminated' position. Is that a legitimate defense in this case?
Tara Smith: Well, of course the old adage is to be open-minded, but not so much that your brains fall out. Of course, we should consider all options, but that was already done in the early years of AIDS. The "alternative" theories suggested by many deniers (such as drugs, too much sex, not enough nutrition) were tested exhaustively, and they were not alone found to be sufficient to cause AIDS. HIV presence was, and has been repeatedly in thousands of published studies. As much as we can be sure about anything in science, we know that HIV causes AIDS.
Scientific Blogging: Usually there is a driving motivation in any cause. Some care about the environment, for example, while others see a way to make money or get elected with environmental causes. I can't figure out a motivation for HIV/AIDS deniers. Based on your research, what do they gain by clouding the issue?
Tara Smith: I don't think you can assign one motivation to all of them. Some of them, especially those who are themselves HIV+, simply seem to not want to believe that they've acquired a pathogen that could, potentially, kill them eventually. Others are highly distrustful of the government, scientists, and anyone in authority in general. Certainly some do have religious motivations--they still believe that AIDS is a punishment for "sinning," acts such as sex (and particularly homosexual sex) and drug use. I'm sure there are probably dozens more reasons, but I've not come across any overarching theme. Creationists are much easier to group together than HIV deniers, who seem to run the religious and political spectrum.
Scientific Blogging: It's obvious there are fringe individuals and groups that want to leverage the confusion about the disease to advance their ideology but most are, like advocates for any HIV awareness group, legitimate victims of the disease who genuinely care and feel like we are being duped by drug companies or groups stigmatizing sex. I can't help but feel you're all on the same side - you want people to stop dying. What would be enough to convince everyone? A new generation of assays? Is it reasonable to expect to find a cellular treasure chest that answers all questions?
Tara Smith: Yes, I do think that's unreasonable. Sometimes research does move forward in a giant leap like that--finding some "treasure chest" that moves a problem far ahead. Usually, it moves forward in much smaller increments. I don't think there will anything that's enough to convince everyone. There are still people out there who deny that germs cause disease, period--despite incontrovertible evidence to the contrary. All the science in the world won't convince people who don't respect the scientific method, or the scientists who carry out the research, and that's really the bottom line in all of this.
Scientific Blogging: We greatly appreciate you taking some time to discuss this. Any final thoughts for our readers?
Tara Smith: I think it's important for scientists (and laymen interested in science) to be aware that this kind of science denial still exists, and is still being actively promoted by some groups. Obviously evolution denial has gotten the most attention (and is arguably the most organized and well-financed), but other forms of science denial exist as well, and have been propagated by the internet. And while many other forms of science denial are distressing to scientists, and have numerous political implications, HIV denial has the potential to be deadly.
I spent about a week researching this and came away more confused than ever. Not about the science, because one thing is certain in science and logic: not fully understanding how X causes Y is not proof that it doesn't happen. I don't think the HIV/AIDS link is a myth propagated by drug companies and at some level we have to either trust pathologists and epidemiologists or become them and prove them wrong.
Uninformed political leaders or bizarre cultural perceptions will always be on the fringes of these kinds of issues but at its core, data has to be data. I asked Dr. Smith some pointed questions and got straight answers, including acknowledgements when the answers were incomplete. In looking over the data from the skeptic side I saw far too many out-of-context bits of fact and basically-accurate-but-incomplete statements that then lead to misleading conclusions.
According to Avert.org 2.6 million people died from AIDS in 2006. At some level it doesn't matter what caused it, it's still an epidemic that needs to be fixed.
I am okay if the medical community can't give me a complete explanation for what caused AIDS, as long as they fix it. Heck, in physics I can't give anyone a comprehensive definition of what a magnetic field is.* Does that make me a fraud or a dupe for the semiconductor industry that does $120 billion annually without knowing the answer? No, we'll figure it out some day. Likewise in the field of AIDS research, the nuances of what caused it can be found over time but medicine needs to go about the business of saving people right now.
* A magnetic field is a region in space where a magnetic force can be detected. That's the best answer you're going to get.
Dr. Tara Smith is Assistant Professor, Center for Emerging Infectious Diseases, College of Public Health at the University of Iowa. Her most recent book is Group B Streptococcus and she has a blog at http://scienceblogs.com/aetiology.
Dr. Steven Novella is an academic neurologist on full-time faculty at Yale University School of Medicine and he has a blog at http://www.theness.com/neurologicablog/.
Dr. Henry H. Bauer is Professor Emeritus of Chemistry & Science Studies at Virginia Polytechnic Institute & State University and author of The Origin, Persistence And Failings Of HIV/AIDS Theory. His website is http://www.failingsofhivaidstheory.homestead.com/