HIV=AIDS Controversy: Cognitive Bias and Medical Errors

Christine Maggiore's account of her rather harrowing experiences with the medical establishment serves as an illustration of one of the most fundamental problems underlying clinical malpractice today—cognitive bias in medical decision making. Here's a summary statement about it as it applies to Maggiore's experience:

Knowledge-based errors

Knowledge-based errors are the most complex of the errors we've discussed. They typically occur, as one might expect, from a lack of or misapplication of knowledge. As a result, often the intention of the actor is itself erroneous. This is where some of Tversky's bias heuristics can come to play. The availability bias (choosing a course of action because it is the one that comes most readily to mind) and confirmation and overconfidence biases (fixation on a particular course of action and actively pursuing supporting evidence or ignoring contradictory evidence) can lead an actor to making faulty conclusions about a situation, and therefore drawing up and executing a faulty plan to accomplish the task.

My Bout of So-Called AIDS

by Christine Maggiore

This past March [2002], I had the unsettling experience of being diagnosed with an AIDS defining condition. The news arrived with cruel precision on the 10-year anniversary of my testing HIV positive, coinciding perfectly with the orthodox axiom that we get a decade of normal health before our AIDS kicks in.

The diagnosis was based on a grade 3 Pap smear with cervical dysplasia, a result that insinuates cancer. Devastating enough on its own, my HIV positive label added a layer of complication.

As you may know, cervical dysplasia and cervical cancer were added to the AIDS definition in 1993 causing the number of women classified with AIDS to increase notably. Even though some 65,000 Americans are diagnosed each year with cervical cancers, and only a small fraction of these (about .0015%) are among women that test positive, HIV + cervical abnormalities = AIDS.

I imagined Dr. Matilde Krim cackling with delight at this seemingly tragic turn of events. Director of the orthodox AIDS research group AmFar, Krim had pronounced me "delusional" in a national television broadcast last fall for daring to consider myself healthy. According to the good doctor, I am merely enjoying the so-called latency period between testing positive and getting sick. During her interview, she did everything short of wish I would die of AIDS.

As an outspoken representative for alternative AIDS views, a full time mascot for healthy HIV positives, and a new mother for the second time, tackling this challenge was the last assignment I wanted. The diagnosis was totally inconvenient to my life and work. I fell prey to despair, called my husband and sobbed into the phone. Together, we recovered my rationality. I dried my tears and asked the doctor to perform another test.

Given the unreliability of diagnostics in general, and the fact that Pap smear slides are read by lab technicians for a matter of seconds, this seemed a perfectly reasonable request. She refused, however, imploring me to "stop being in denial," and acquiesced only after I politely but unrelentingly insisted. Holding my own was emotionally exhausting, and in the end it felt more as if she were humoring me than respecting my judgment.

The second Pap came back grade 2, a slightly less concerning level of diagnosis. According to my doctor, this suggested the presence of Human Papilloma Virus or HPV, a supposedly contagious condition associated with cervical cancer. Since I have never been diagnosed with a sexually transmitted disease, my husband's never had one, we've been together for six years, and all my previous Paps have been normal, I questioned the new results. My skepticism seemed to reinforce her notions I was lolling in denial. Our conversation turned contentious.

I cited information refuting the HPV/cervical cancer hypothesis, Professor Peter Duesberg's well-referenced deconstruction in particular. I recalled how the assumption that HPV caused cervical cancer had risen to popularity in the late 1970s following the complete failure of the Herpes Virus/cervical cancer hypothesis of the 1960s. That according to studies, half the American adult population is infected with HPV yet only 1 percent of women develop the cancer, and while equal numbers of men and women have HPV, men rarely develop penile cancers.

My doctor responded by recommending I see a specialist.

After much discussion, the new gynecologist acknowledged the presence of HPV only correlates with cervical cancer in some cases, and there is no evidence of a direct, causal relationship.

Both gynecologists agreed I should disregard the second test and consider the one indicating cervical dysplasia to be correct. Both recommended a colposcopy (a fairly invasive and painful procedure), to prepare for a biopsy, and urged me to act promptly. Instead, I decided to gather other opinions from holistic health practitioners.

In consultation with a naturopath, I determined I would follow the gynecologists' advice and act as if the worst-case scenario were true, that I had cervical dysplasia or cervical cancer. Together, we created a protocol that would serve to better my health no matter what diagnosis?if any?were correct. This program included detox, colon hydrotherapy, digestive enzymes, daily juicing, food combining, some new supplements, and regular exercise?something I'd slacked off on since the birth of my daughter. On my own, I added ozone therapy to the regimen.

Life went on as normal, apart from the whirr of the juicer every morning and arranging for childcare during the ozone infusions.

Although I vacillated between dauntless, nervously hopeful and scared, my confidence in what I know about HIV and AIDS did not waiver. What makes sense in times of health makes the same sense in time of health challenge. I felt no temptation to suddenly regard my positive HIV test as an illness in need of treatment. Sometimes I worried how others might interpret or use my situation, but the possibility of cancer did not inspire any panicked denouncing or erosion of what I understand about science, medicine, natural health, HIV and AIDS. If given a choice, I would have preferred not having to deal with another dreaded diagnosis, but as long as life dished it up, I accepted the opportunity to learn.

In August, I had a new Pap smear performed by a third gynecologist. I used an assumed name and did not mention my HIV status. This time the result was normal.

My doctor was at lunch when I called with the good news, so I left a message with the front office manager who was totally unimpressed. She explained, "That happens all the time. Most women get an abnormal Pap after having a baby. We just run the test again and it usually comes back normal. If not, the doctor gives them this little cream and that takes care of it."

Until that moment, neither doctor had mentioned an abnormal test was normal after childbirth, that second smears are routinely performed in such cases, or that there was any "little cream."

I have since discovered that the overwhelming majority of my female friends?all HIV negative, some with children?have received abnormal Pap results like mine. For them, a second test was a matter of course rather than a hard won concession. In every case, their results reverted to normal with no therapy.

Testing HIV positive often means being treated differently?with prejudice, based on unfounded assumptions, and as though well informed decisions are elaborate forms of denial. It seemed the dysplasia diagnosis confirmed my doctors' beliefs about HIV, and my supposed illness was the expected outcome. I felt frustrated, and even humiliated. I had to insist on getting what everyone else receives without discussion?the chance to be a healthy human being until proven otherwise.

Whenever I speak in public someone invariably asks, "If HIV doesn't cause AIDS, why do a lot of people who test HIV positive get sick and die?" I think a better question is: How does anyone who tests positive remain well?

Between the initial devastation of the diagnosis, the subsequent social isolation, dire predictions by doctors, lab tests measuring our remaining time, medical care that assumes our inevitable early demise, AIDS organizations poised to usher us into death, negative expectations of friends, family and the public, constant media reports on the incurable fatal virus, pressure to consume toxic drugs, to regard ourselves as infected, abnormal, and ill, pitches to sell off our life insurance, exchange work for disability, and get a handicapped parking pass, and the orders to keep a safe, latex-covered distance from people we love, I wonder how so many of us manage to live.

According to official definitions, I had AIDS a few months ago. I'll never know if the detox, ozone treatments, and dietary changes "cured" me, if the diagnosis changed along with my name, or as with most women, my cervical abnormalities went away on their own?if they ever existed in the first place. Of one thing, however, I feel certain: My knowledge and convictions prevented me from accepting an unverified diagnosis, engaging in unnecessary invasive procedures, and from believing my ability to live in health had come to a crashing halt.

All too often, our options are limited by medical authorities that encourage us to believe the worst, disregard the facts, deny our intuition, doubt our health, and quietly obey orders. I offer my experience with hopes that those of you also labeled HIV positive will create a foundation of knowledge that supports your choices and that enables you to act in your best interests when faced with life's many challenges.

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