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They keep appearing in every-greater numbers on chat boards, websites, cafés, and off-the-grid support groups in people's home – all the traditional gathering places for dissenters. They gather where they cannot be blocked, or harmed, or fired, or deleted, or told they don't exist, or that they are mad.
They are called "AIDS denialists". These are people who deny and defy the belief of the mainstream medical community that HIV (human immunodeficiency virus) causes AIDS and death. They say they are living proof that HIV-positive people can have long, healthy lives without taking anti-HIV drugs.
The "denialists" say the HIV test is problematic and does not clearly establish a link between HIV and AIDS. Those who test positive for HIV are encouraged to take toxic drugs with serious side effects; those who do not comply face discrimination.
Nevertheless, the majority of scientists involved in AIDS research and the development of AIDS pharmaceuticals continue to treat such ideas as dangerous. The AIDS establishment says the dissenters' message undermines safe sex practices and dissuades people from taking lifesaving medications.
A rift that began over 20 years ago has now developed into an international battle of two seemingly irreconcilable belief systems: Is HIV deadly or harmless?
A pharmaceutical disconnect
It is only in recent years that AIDS activists have relaxed their admonition that all HIV-positive people must go on medications as soon as they test positive or shortly thereafter. In the early years of AIDS, the drug of choice was AZT, a potent chemotherapy that some critics say hastened the demise of those who were placed on initial very high doses. AZT terminates DNA replication and decimates the cellular system, creating, like AIDS itself, immune failure. Side effects of the drugs ranged from the merely unpleasant (headaches, vomiting, bloating) to the seriously toxic (neutropenia, hematopoietic toxicity, anemia).
The drug fell from common use in the mid-1990s, and multidrug cocktail therapy displaced AZT as the mainstream treatment of choice. After a period of intense marketing of antiretrovirals (drugs that purport to attack the HIV retrovirus), the drugs are no longer universally seen as lifesaving.
A paper published in 2006 in The Lancet reported the results of a large study that tracked 22,000 HIV-positive people between 1995 and 2003. It found that the drug therapy they received, known as HAART (highly active anti-retroviral therapy) did not "translate into a decrease in mortality."
Another study published in the Journal of the American Medical Association (JAMA) in 2006 found an uncertain link between HIV levels and decline in CD4 cells. Conventional AIDS theory is that HIV targets and kills CD4 cells (T helper cells, a type of white blood cell active in the immune system), and low CD4 counts are a marker for AIDS.
The JAMA study found, however, that HIV-positive status does not correlate strongly with or cause depleted CD4 counts. A separate study published in the Journal of Infectious Diseases in 2006 found that even HIV-negative people can have low-level CD4 cell counts, making CD4 levels even less of a conclusive marker for AIDS.
The science behind the HIV antibody test is also being questioned.
Testing positive isn't
Because HIV was co-discovered in competing labs in France and the US, the test that we use to detect it is itself politicized. Critics of the test point out that HIV has never been fully purified, thereby lacking a gold standard (itself), which is the only way to create a dependable test.
HIV-antibody tests carry disclaimers in the package insert, addressing "sensitivity and specificity" that read: "At present, there is no recognized standard for establishing the presence or absence of antibodies of HIV-1 and HIV-2 in human blood."
Test inserts concede that neither the ELISA nor most Western Blot HIV tests are FDA-approved to diagnose HIV infection. In addition, more than 70 non-HIV-related blood conditions can cause a false reaction, and there is no consistency from laboratory to laboratory in interpreting the tests. There are at least 10 different standards used in different countries and laboratories to gauge the antibodies (blood proteins) as either positive, negative, or indeterminate. The tests pick up a broad spectrum of antigenic stressors (foreign substances that induce the production of antibodies), including toxins and microbial bacteria.
"When you look at all the studies, the HIV test is not a test for HIV," says Stephen Davis, author of Wrongful Death: The AIDS Trial (Virtualbookworm.com Publishing, 2006) and a former Arizona state senator who has set up a ring of websites for people who are HIV-positive, healthy, and not taking HIV drugs (see http://www.helpforhiv.com). "It is a test that is supposed to find antibodies to HIV, but every single one of the proteins used in the test kits have been proven to be associated with something other than HIV."
Despite new studies and the mounting anecdotal evidence that belies the official theory, the AIDS establishment continues to insist that HIV causes AIDS and only antiretroviral drugs can save lives.
Why aren't we dying?
The burgeoning survivors movement, however, says it is living proof that HIV is not deadly – not only because the survivors aren't dead, but because they aren't sick at all, and many have waited a very long time for their death sentences, more than 20 years in some cases.
In 1984 the latency period between HIV infection and death was said to be as short as six months. Now most researchers believe the period between HIV infection and AIDS is about nine to 10 years, while the period between the first appearance of AIDS symptoms and death is estimated at 9.2 months. The period between initial HIV infection and death may be, according to some sources, much longer than the AIDS establishment will acknolwedge.
"I don't believe there is any way to know how many [survivors] there are," says Davis. "More and more people are questioning their own diagnosis and the entire issue of whether HIV causes AIDS." Over the past two years, he has been collecting narratives and testimonies and helping people connect and tell their stories in a non-intimidating venue.
The familiar AIDS story revolves around the drama of infection with HIV, followed by illness, drugs, and a kind of pharmaceutical redemption only obtained by coming to terms with HIV. But the stories Davis has collected have a whole different arc: they are about individuals who, for a variety of reasons, came out of the AIDS-HIV paradigm, having realized that the viral antibodies did not spell doom. What they found instead was that the HIV/AIDS belief system closed in on them.
Here's one of those stories: "Frank A." is a Canadian hemophiliac in his mid-thirties who tested positive for HIV in 1987. Although he has never experienced a single symptom of the more than 30 clinical conditions now associated with HIV infection, he cannot escape the fear, stigma, and shunning that follow those who defy the AIDS belief system.
"The media has portrayed HIV-positives as something horrible and contagious and as killers. I feel like it's me against the world – a complete nightmare from hell. It's like having a big red X painted on your forehead," say Frank. "What I have seen over the years is that most other HIV-positives don't question the doctor's orders. Most of them just took the drugs they were handed, and they died. I truly believe that arguing with my doctor has saved my life."
A group of long-term HIV-positive people who have remained healthy while staying off the drugs have organized monthly support meetings in New York. They call their group Living Proof. Most spoke to me of being shunned, professionally persecuted, and raged against when they revealed to their friends, family, and colleagues they did not think HIV would kill them.
"It's like being a ghost," one man said, 10 year positive and healthy, as we sat in a park in Chelsea, where nobody could hear our conversation. "We don't officially exist. Nobody can see us or hear us. We make [the AIDS establishment] furious. We make our own loved ones furious. In the end, you learn not to talk about it."
"It's a lonely way to live," said another man who's been HIV-positive and health – while refusing antiretrovirals – for 13 years. "If I followed the party line I would have a universe of support at my fingertips, a whole infrastructure." He says that for those who have just been given an HIV-positive diagnosis, "just the act of seeing somebody like me who is healthy and hasn't done the meds is very reassuring. The first thing I tell them is, 'You're going to be fine.'"
The damage done
"It really is heartbreaking to realize what we have put these innocent people through," reflects Davis. "Beyond the scientific debates, as important as they are...this really is a human issue."