The Internet is serving as a fertile medium for HIV denialists for spreading false ideas about HIV and AIDS, a fact which could have serious public health consequences, according Tara Smith, an assistant professor of epidemiology in the College of Public Health at the University of Iowa.
Smith recently addressed the issue with co-author Steven Novella, an assistant professor of neurology at Yale University School of Medicine, in a recent article in the online open access journal PLoS Medicine
Smith, who authors the blog Aetiology has been an activist for science for several years. She has taken on not only HIV denialists, but through Iowa Citizens for Science, a group she founded, she has also battled creationists seeking to alter public school curricula. She holds a B.S. in biology from Yale University, a Ph.D. from the Medical College of Ohio in Toledo, Ohio, and completed her post-doctoral training in molecular epidemiology at the University of Michigan.
The Journal of Life Sciences' Daniel S. Levine recently spoke to Smith about HIV denial, the problems of scientific illiteracy, and why it's important scientists respond to such assaults rather than just dismiss them. Edited experts follow:
Q: What is HIV denial?
A: HIV denial really runs the whole spectrum. There are those who completely deny that the HIV even exists—that the virus is present at all in infected individuals to those who are kind of more moderate about saying that HIV exists, HIV may contribute to AIDS, but that it alone is not sufficient to cause that syndrome. Then you get those who are in between, so it really runs the spectrum. I would say anyone who disregards the biomedical literature and the weight of evidence in favor of HIV causation of AIDS, I would consider to be an AIDS denier.
Q: Part of your concern about this is in the paper you wrote is that the Internet has given HIV denial new life. How so?
A: It provides a way for people all across the world to come across these web sites, these papers, these musing and ramblings and have access to them without having the critical examination of those side by side. Many of these documents are things that sound very good to an educated layman or an individual who doesn't have much background in the biology of AIDS, but they just don't stand up to a scientific critique.
Q: Walk me through the history of the HIV denial movement. Where did it begin? Was it Peter Duesberg at UC Berkeley who got this started?
A: In the beginning people obviously didn't know what caused AIDS. There were many different theories. Many people thought drug alone caused it. You had the religious right pointing to sexual practices and saying that alone was enough as punishment from God. All these different theories were bandied around. The isolation of HIV and subsequent studies that showed this was present in people who did develop AIDS started the ball rolling along to establish that as the definitive cause of AIDS. By the late eighties, that was well accepted in the scientific community. Peter Duesberg was one of the holdouts to that hypothesis, saying he didn't believe it was the cause and that he favored the drug hypothesis—it was things like poppers—and even later the HIV drugs themselves that caused the disease rather than a virus. He's been one of the most prominent advocates on his side of the fence and people have essentially recycled his arguments over the last 20 years.
Q: I take it people who have embraced his beliefs take solace in the fact that he's an established academic, even though they often shun the academic establishment. He's a molecular biologist at the University of California at Berkeley.
A: He is at Berkeley. He was well respected in his own field prior to all of this. He's a member of the National Academy of Sciences. He does have academic clout and credentials. He is not, however, anyone who has researched HIV himself. He's not someone who has experience with this.
Q: You've not only had Duesberg, but South African president Thabo Mbeki and groups such as Act Up San Francisco challenging the accepted scientific views on HIV and promoting such things as illicit drugs, AIDS drugs, stress, fatigue and unsanitary conditions as causes for AIDS. What's been the effect of this? Has it hurt public funding for research, or caused people infected with HIV not to care for themselves as they should?
A: I don't know that it has had any effect on public funding. Many scientists don't even realize this is going on. For them it's been such a settled issue for so many years. This is a fringe element and not even worth addressing for so many of them. But it has had an effect on the general public. I've had several people email me already about the article saying they knew people influenced by these denialists ideas and that they didn't take their medicines and got very sick or died as a result.
Q: You've done some work on creationism. Can you put the HIV denialists in a broader context of a rejection of science? Do they share common characteristics?
A: Sure. The early drafts of the paper were originally written as a comparison of methods creationists use and methods HIV deniers use. They push back the goal posts. There's never enough evidence. It's one big scientific conspiracy. They think the experts are silencing dissent. It's all the same whether its HIV denial, it's anti-evolutionism, or it's global warming denial. They use remarkably similar tactics and strategies.
Q: Is there science behind the HIV denials?
A: It depends on the arguments. Certainly the ones at the extreme that deny HIV exists at all are quite absurd. There are some people that point out there are long term progressors—people who have been infected with HIV for many years and never seem to get sick and go on with this for years or decades and seem to be fine. They point them out as an example of the AIDS paradigm being incorrect and scientist not knowing what they are talking about. They have found some people are resistant to the virus. Some are resistant to being infected. Some seem to control the virus much better than the average person. We see this with any kind of infectious agent. Many more people are infected than will ever become sick. If we didn't see that with HIV, it would be more surprising than that we do see it. These are people again who don't have a very broad background in infectious diseases or epidemiology and don't realize this happens across the board with every infectious agent we know of. They just take that and run with it say the HIV scientists don't know what they are talking about.
Q: How has the scientific community at this point reacted to the HIV denialists and why shouldn't they just dismiss them?
A: Many of them have and I totally understand that. There are only so many hours in the day and if you are going to be either trying to work toward a better understanding of HIV biology versus fighting with some HIV denier online or on the phone, it seems a very easy choice. There has been a small group them kind of led by John Moore of Cornell University that has been trying to set the record straight and spending their own time to counter some of the denialists points. He runs the web site aidstruth.org. [www.aidstruth.org] He updates that with anything that's going on in this world of HIV denial. He's an AIDS researcher himself, so he's obviously very close to this and it means a lot to him.
Q: Does this point to a broader concern with scientific literacy?
A: You get to any of these surveys and you see that so many Americans have no basic understanding of science and how it works—not only the facts—if they can differentiate a virus from a bacterium, but no understanding of the scientific method and how this data is gathered. Experiments need to be replicated by other groups and it is a collective process. You build on prior evidence and go with that. It's not only that Americans don't understand the facts, but that they don't understand how science is done period. That's why you get these comments that scientists are all brainwashed. That they all listen to each other and don't question the authority. That's really the antithesis of what science is. You go out and do your own things and question everything and are skeptical. It's only when things are confirmed again and again by different groups that they become scientific facts.
Q: Is part of the answer that scientist need to learn to more effectively communicate with the public to counter such phenomena as HIV denial?
A: I think so. These things are usually put through the filter of the media, which is great. Many of you guys do an excellent job, but you lose so much in the interpretation there. There's a lot of oversimplification, occasionally mistakes and people don't really have a place to ask questions and ask for clarification and really have kind of a conversation with scientists. That's one thing I really like about blogs. You can do that there and it's kind of a more casual atmosphere than the scientific journals and newspapers. It would really help if we could get more scientists out there, giving lectures to interested lay people and kind of coming down from the ivory tower and just talking with the people more. It's not an easy thing to do. I certainly have sympathy and we're all pressed for time, but every little bit helps.