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The difference between thinking you will live and thinking you will die often depends on an HIV antibody test that is shockingly unreliable. The case of a 3-year-old child in North Carolina proves that even hospitals have to admit this now.
Whether you are an HIV believer or an HIV skeptic, you can't possibly argue that the HIV antibody test is not wracked with problems. It is the gateway to the Kafkaesque nightmare known as AIDS, which manifests itself physically, emotionally, sexually and socially. For the entire global superstructure of AIDS – in all its multifarious forms of abuse – to be teetering atop a diagnostic test so unreliable is a terrifying specter.
What are the problems with the testing? (There are two tests, by the way, the "ELISA" test and the "Western Blot" test. The latter is said to be more accurate, and is used in this country as a confirmatory measure against two prior ELISA tests.) For starters, it does not test for HIV per se, but for patterns of proteins thought to be specific to HIV. These are specified as "p" for protein, followed by a number that represents a molecular weight. HIV is recognized by proteins p24, p17, gp41, gp120, etc. It wasn't until the early '90s that researchers thought to check how ubiquitous these "HIV proteins" might actually be.
In 1993, the first major critique of the HIV tests was written by a team of researchers from Perth, Australia, and published in the journal Bio/Technology. Researchers Eleni Papadopulos-Eleopulos, Valendar F. Turner, and John M. Papadimitriou reported that p24 antibodies have been found in a number of people who do not have HIV, including 41 percent of patients with multiple sclerosis and one out of every 150 healthy people with no afflictions. Conversely, they found that p24 is not found in all HIV patients or even all AIDS patients.
If things were right in the world of science, this paper would have been the metaphorical iceberg that sank the Titanic. I recall feeling a palpable sense of shock when I first read it. It's now six years later, and nothing has changed. But listen to what these researchers unveiled about the HIV test.
They made four major points:
- The tests are not standardized, meaning different labs have different criteria for determining what is negative and what is positive;
- The tests are not reproducible, meaning the test fails when tested against itself, and repeated tests can alternate between positive and negative;
- Proteins that are thought to be exclusive to HIV might instead be cellular contaminants or debris; and
- There is no "gold standard" for the HIV test, meaning there is no purified isolation of HIV to test against.
They reported on Amazonian Indians who have no contact with anybody outside their tribes and have no AIDS. Somehow, 13 percent of the Indians were HIV-positive, according to the Western Blot test. "The above data," the Perth team wrote, "means either that HIV is not causing AIDS... or the HIV antibody tests are not specific."
There are at least 70 underlying conditions – including pregnancy, auto-immune disorders, fever, flu, flu shots and malaria – that can trigger a false-positive test result. That could account for many of the so-called AIDS cases in Africa, where only the ELISA test – the more problematic of the two tests – is used. What if all these Africans are really testing positive for malaria?
The HIV test is a scale, not a "yes" or a "no." Many people fall in the gray zone and are told they are either positive or negative, depending on which country they are in and which lab their blood has been sent to.
The Perth team cites data from a mass screening performed by the U.S. military, in which there were 4,000 people who had two positive ELISAs followed by a negative Western Blot. All 4,000 would have been told they were HIV-positive anywhere in Africa and even in England, but negative in the United States and Scotland. The researchers also found 80 people who had two positive ELISAs and a positive Western Blot, followed by a negative Western Blot. Those 80 people, had they not been part of this particular study in which blood was tested over and over, would have been home with a death sentence – told they had the AIDS virus. In the United States, the criteria for telling a person they are positive stops with two ELISAs and one positive Western Blot. How many other people, if they had the luxury of an additional Western Blot, might turn up negative?
I have met, over the years, dozens of people who have stories of tests coming back positive, then negative, then indeterminate. In some cities, results have varied from lab to lab, with the difference between thinking you will live and thinking you will die hinging on a minute gradation of color, and perhaps the mood and/or belief system of the lab technician. If the blood is known to come from a gay man, for instance, it will be more likely to come back positive. In fact, blood has been tested for this bias, as journalist John Lauritsen has reported. The same sample tested positive when the lab thought it came from a gay man, and negative when the lab thought it was from a low-risk heterosexual. Anonymous testing, including the do-it-yourself blood and oral tests you can find in drugstores, doesn't suffer from similar biases, but it is still flawed in the four ways described above.
Now HIV antibody testing has been dealt an additional blow. Medical researcher Dr. Roberto Giraldo, who for the past six years has been working at a lab of clinical immunology at a large New York hospital, published his findings in Continuum's most recent issue.
When an HIV test is performed, the blood is first diluted. With ELISA, it is diluted 400 times. The dilution is somewhat less with the Western Blot. Most blood tests that look for antibodies against germs use undiluted blood. But to prevent false positive results, some blood tests – including tests for measles, mumps and cytomegalovirus – do use diluted blood. However, these are only diluted at a ratio of 1:16 or 1:20.
"What makes HIV so unique that the test serum needs to be diluted 400 times?" asks Giraldo. "And what would happen if the individual's serum is not diluted?"
Well, he decided to find out. Giraldo ran about 100 specimens, including his own blood, undiluted. Every single sample tested negative for HIV when diluted to 1:400 and came back positive when tested without dilution. "... the results presented here," he writes, "suggest that every single human being has HIV antibodies. And this suggests that everybody has been exposed to HIV antigens."
In other words, HIV, (if, for now, we agree such an endogenous entity exists, which is another whole kettle of fish) is not a thing or a bug or a whole round viral entity that you either have or don't have. It is all a question of degree. If you have been exposed to HIV antigens many, many times, your levels of HIV will eventually rise to the point where you will test positive.
But as the poet Tomas Transtromer once put it, perhaps we are seeing these events from the wrong perspective – a heap of stones instead of the face of the sphinx.
What the Perth team is actually trying to tell us is that HIV is part of all of us. When they say it doesn't "exist," as they notoriously have, they seem to be saying that it does not exist as a foreign invader. It exists as part of our genome, composed of maybe millions, maybe billions, of retroviral particles.
Why does this all matter? Because a flaw in a diagnostic test can wreak havoc and tragedy in a human life.
Two weeks ago a 3-year-old child in Winston Salem, North Carolina, was struck by a car and rushed to a nearby hospital. Because the child's skull had been broken and there was a blood spill, the hospital performed an HIV test. (This story was reported by WXII Channel 12 newscaster Tonja Lecklitner.) As the traumatized mother was sitting at her child's bedside, a doctor came in and told her the child was HIV-positive. (Both parents are negative.) The doctor told the horrified mother that she needed to launch an investigation into her entire family and circle of friends because this child has been sexually abused. There was no other way, the doctor said, that the child could be positive.
A few days later, as the hysteria abated, the mother in a moment of clarity demanded a second test. It came back negative. The mother was understandably livid. (Imagine how lives would have been shattered in one moment had she begun accusing family members of sexual abuse!) She asked the doctor to apologize, but in keeping with HIV-related arrogance, he refused. The case was referred to the Culpepper, Virginia-based watchdog group International Coalition for Medical Justice (ICMJ).
"This is very Southern," remarked ICMJ's director Deane Collie, herself a Southerner. "This mother told me she would have been satisfied with an apology. In the South, a man in that situation would be expected to act like a gentleman, to admit he had made a mistake and to apologize. But he refused."
The mother may sue the hospital. The hospital, meanwhile, held a press conference, where a remarkable admission was made. In her effort to clear the hospital of any wrongdoing, a hospital spokesperson announced that "... these HIV tests are not reliable; a lot of factors can skew the tests, like fever or pregnancy. Everybody knows that."
© 1999 by Celia Farber
Originally published in Impression magazine