AIDS exists but HIV does not, because there is no concrete evidence that the HIV virus causes AIDS. That’s the premise of HIV skepticism, portrayed in these two documentaries (entirely viewable on Google Video): Deconstructing the Myth of AIDS / The Other Side of AIDS. The scientific argument has been summarized in the sample chapter of a book written by Peter Duesberg, the most prominent researcher on the skeptic side.
I have my skepticism about HIV skepticism because I just am not ready to accept the idea that thousands of motivated doctors and researchers, some of them losing their own loved ones due to the very disease they are researching, are devoting themselves for nothing. But thanks to the aforementioned documentaries and articles, I have read more about HIV/AIDS and I am now skeptical of the “fact” that HIV virus is the sole, direct cause of AIDS. The dormancy period, the time in which the virus remain in stealth mode, is extremely long for HIV. The Fact Sheet about AIDS from WHO states “A person infected with HIV may have no symptoms for up to 10 years or more.” What’s that “or more” about? I can’t shake off the feeling that it is the experts’ way of saying “We don’t know.”
Maybe the truth is somewhere in between the two extremes, as is usually the case. My theory is that HIV has a strong connection with AIDS, if it’s not the direct cause. But nobody, neither the authorities nor the skeptics, has found a better answer yet. The problem is not that the cause of AIDS has not been found; we have already been living with another such disease since the beginning of the human race: cancer. The problem is that doctors never say aloud that they don’t know. In this sense, HIV skepticism does highlight the dark side of current medical practice: an incredibly strong tendency to avoid admitting the unknown.
The integral theorist Ken Wilber writes about his experience when he was looking for a treatment for his late wife Treya, who was diagnosed with breast cancer, in Grace and Grit (a terrific read for anyone who is interested in the spiritual aspect of the fight with cancer).
A good friend of ours who had advanced cancer was given the very strong recommendation, by her doctors, that she undertake yet another course of very intensive chemotherapy. If she did so, the doctors told her, she could expect to live an average of twelve months. It finally dawned on her to ask: How long can I be expected to live without the chemotherapy? The answer came back: Fourteen months. The doctors’ recommendation: Do the chemotherapy.
As Wilber follows up, nobody is lying—at least consciously. It’s that everybody, including the doctors, wants a conclusion.
I really don’t blame doctors for this; they are largely helpless in the face of desperate patient expectations. Nor have I ever met a single doctor that I thought was maliciously trying to manipulate patients. By and large these physicians are incredibly decent men and women doing the very best they can in impossible circumstances. They’re as helpless as we are.
The true problem, in my eyes, is our desire to know everything. We just want an answer, so desperately, all the time. Regarding the HIV denial discussion, I don’t think the establishment wants to exploit patients by holding back the truth and extending treatment as long as possible (as the skeptics say). And I don’t think that skeptics are dangerously delusional people who spread wrong idea about AIDS to mislead innocent people (as the establishment says). I believe both parties have the same objective: to know the truth. And they also share the understanding of their own results so far: failure, with progress. They are accusing the opponent of the same fault—the incapability of delivering accurate information. They might just hold a mirror in front of each other.
What they, or we, truly need is to stop blaming each other and have the courage to live with the unknown. In this respect, maybe the patients are already walking ahead of the researchers. Xeni Jardin, the co-founder of BoingBoing, recently shared the news that she has breast cancer (another terrific read you shouldn’t refuse). She shares the wisdom she learned from fellow breast cancer survivors on coping with the fear.
The trick, these fellow travelers tell me, is to accept the not knowing and find your equilibrium in that new gravity. Calm the mind. Find your balance out on the cold planet, whether or not you know the next step, or the date of the next appointment, or what good or bad news the Technetium-99 isotopes floating around in your blood during the last scan reveal.
You must be at peace with not knowing, they tell me. That is how you get through outer space, and find your way back home.
What matters is not arguing about who is right or piling up mountains of research papers for evidence. Instead, we need to learn to be at peace with what we know, and more importantly, what we don’t know. When we do want to fill the missing pieces with our imagination, then let’s at least know what we are doing—it’s called art, not science.