For those who are interested. A sensationalist piece like Farber's is just
what cheap media loves. It was picked up by the New York Post last week,
too. Maia Szalavitz wrote a good critique for NewsWatch online:
A popular magazine gives dissident views on AIDS a dangerous footing
By Maia Szalavitz
March 14, 2000
A highly misleading and extremely biased article is stirring controversy in the AIDS community. Published in the March issue of the American "lad" magazine Gear, it claims that the "cocktail" of anti-HIV medications currently in use is killing more people than it helps. The story has also been picked up - and expanded on - by this week's New York Press and on an ABC News Web site.
What Gear magazine does not disclose, however, is that the writer, Celia Farber, has been an official member of a group of so-called AIDS dissidents - who believe AIDS is caused by drugs, not HIV - for nearly 10 years.
And the article itself contains so many factual errors and distortions it is hard to know where to start when attempting to untangle them.
For one, it completely misrepresents the overall picture of the effect of the cocktail (called HAART, for Highly Active Anti-Retroviral Therapy) on the HIV-infected community. Says San Francisco-based AIDS reporter Bruce Mirken, "I have been around a large number of people with HIV throughout the '80s. From 1988-95, I attended, on average, a funeral a month. In the last four years, it's been one a year and I still know a large number of people with AIDS."
Farber writes in Gear, "on a national level, AIDS deaths began dropping at the end of 1994, at least three years before the drugs hit the market, a fact no one disputes." But numbers from the U.S. Centers for Disease Control (CDC) tell a different story. In 1994, there were 49,442 deaths. In 1995, there were 49,895 - but in 1996, there were 37,221 and by 1997, this had declined to 21, 445.
Mirken points out that the first protease inhibitor (an important part of HAART) was approved in 1995, and that the largest drop in deaths occurred when the drugs were widely used. "I'll dispute her 'fact,'" says Mirken, in response to the last part of Farber's sentence.
Farber also claims that "most people on cocktail therapy can barely function." Says Mirken, "I know dozens of people who are more than functioning. I know some who have had some toxicities, but they dealt with them by switching drugs. I also know a lot of people who could barely function because of AIDS who are functioning well now (thanks to the therapy)."
Farber draws her accounts of cocktail horror stories from a group of AIDS activists in San Francisco [see history of so-called: "ACTUP"/SanFrancisco] who don't believe that HIV causes AIDS, and who oppose all anti-HIV medication and even some medications taken to prevent opportunistic infections. That group, however, only tends to see drug failures and non-drug successes. Those for whom the drugs are working have no reason to get involved; those who had avoided drugs and then became ill either start drugs and get ostracized by those who oppose them, or get so sick they drop out.
Mirken has interviewed several former members of this group who became ill, started taking HAART and got better. One, Sean Current, told him that he had infected his lover because of his belief that HIV was harmless, and that he nearly died because Kaposi's sarcoma had spread through his lungs before he accepted medical treatment.
Mirken quoted Current in Jan. 26 San Francisco Bay Guardian article. "I brought Peter Duesberg [the main scientific proponent of the HIV doesn't cause AIDS movement] into my home, my town, to speak. I had just met Sebastien [my lover] and I introduced him to Peter, and over a few months Sebastien became a believer. I have to live with that."
Farber also conflates a debate within the HIV research community over when to start therapy with a debate over whether to start it. No one in the AIDS community denies that HAART can be toxic and that it can have deadly side effects, but few deny that it has also brought numerous people with late-stage AIDS back from the brink of death. It's like cancer chemotherapy, both the disease and the drugs can kill.
Last year, a much more nuanced and accurate article in Esquire by Pulitzer-prize winning AIDS reporter Laurie Garrett laid out the problems with HAART. While no less grim about the prospect of HAART as a cure, Garrett's story did not ignore its benefits.
Says Garrett, "I'm surprised that information regarding the limitations and risk of HAART is being perceived as new and shocking. I have written extensively about it for at least three years, for Newsday and Esquire." Garrett does not believe that the failings of HAART are cause to question the link between HIV and AIDS, however.
The distortions in Farber's article don't stop with the science, either. Farber attacks AIDS researcher David Ho, an early supporter of the cocktail approach whose hypothesis was that HIV might best be attacked by a "hit early, hit hard" technique. Making fun of everything from his real first name (which she says means 'great one') and the graphic illustration used to depict Ho as Time's "Man of the Year" in 1996, she paints a picture of the unassuming HIV researcher as an evil self-promoter who "cast a powerful spell" over the media and medical community.
She implies that he used a publicity blitz to make himself Timeís "Man of the Year" and that publicity is what swayed doctors to start "poisoning" their patients with HAART. However, Ho didn't have a publicist until after the "Man of the Year" cover appeared - and in fact, as a producer for Charlie Rose in the early '90s, I found him extremely reticent to make any public appearances.
Throughout her article, Farber relies on claims from members of an organization called The Group for the Scientific Reappraisal of the HIV-AIDS Hypothesis, but does not identify them as such - giving their positions equal weight with those of mainstream AIDS figures. An entire section of the piece is based on second-hand reporting from one member, who describes a series of incidents at a medical conference.
Farber does not identify the reporting as second-hand, however, but a piece written by her source describing the same conference and posted on the Web is almost identical. It notes that the press was not permitted to attend the conference, and that participants were barred from subsequently discussing conversations held there with the media. The source was the only one to break this embargo so it is hard to know if his account of those conversations is accurate and unbiased. The source, however, is a known HIV dissident.
In the last few years, the anti-HIV camp has become increasingly desperate - and this article reflects that fact. It repeats old claims that HIV doesn't kill T-cells and doesn't affect enough of them to do harm, which have long been refuted. It relies on the claims of a scientist who is not only skeptical about HIV, but about the theory of evolution itself.
It is certainly the case that HAART is not a magic bullet, and that the number of people who experience serious side effects like elevated cholesterol levels (which can lead to heart attacks and stroke) is increasing as more people take it for longer periods of time. The real debate is when to begin therapy. Given the toxicities and the fact of viral resistance, the medical community is shifting from "hit early, hit hard" to "wait and see."
This is how science progresses - messily, from one hypothesis to another, not in a nice straight upward line. Reporters should know this, and not try to profit from dashing people's hopes and claiming that no gains have been made. The statistics show the opposite: a study published in the New England Journal of Medicine in 1998 found that mortality associated with AIDS declined by over 300 percent between 1994 and 1997.
A story about a debate over clinical practice in HIV care isn't particularly sexy though - and wouldn't be right for a magazine targeting promiscuous young men who often don't want to bother with condoms. The real outrage is the promotion of denial and unsafe behavior pushed by the anti-HIV camp - not the mainstream AIDS community's science.
Maia Szalavitz is a contributing editor to NewsWatch
It seems that the primary goal of so-called "ACT UP "SF here is to undermine the work of Survive AIDS nee ACT UP Golden Gate, and to dominate the field of AIDS activism in SF through a campaign of carefully calculated confusion. This is bad enough, but the consequences are worldwide.
As distracting and timewasting as it may seem, it looks like the only option for real AIDS activists is to confront the issue head-on -- to develop a campaign to expose so-called "ACT UP" SF and similar groups for what they are.
Because I live in Seattle, where the impact of the HIV nay-sayers is trivial, until recently I have found it difficult to take them very seriously. But from following events described by others here on AIDSACT and from other sources, I see that the HIV nay-sayers are a real threat.
I have some ideas about how to deal with this. I submit them humbly, understanding that my direct experience with so-called "ACT UP" SF etc. is limited. But I want to get us thinking strategically instead of reactively.
1. The HIV nay-sayers are a result of, and a contributing part of, the larger AIDS disaster. (We are no longer facing an "AIDS crisis." Crises do not last for 20 years. AIDS is now the status-quo, part of how the world is.) As such, they must be dealt with just as we deal with other political problems caused by AIDS, such as religious AIDSphobia, legal discrimination, etc.
2. The HIV denialists cannot be wished away by denialism on our part. Simply ignoring them and not responding to them gives them room to grow. But be careful. For a small, unknown group, there's no such thing as bad press. But for a large, well-known group, there is. The idea of a boycott of the so-called "ACT UP" SF buyer's club is a possible example of the effective use of bad press.
3. Stop calling them "dissidents". This merely romanticizes them and reinforces their claim that they are being "suppressed". I suggest "HIV denialists" or "HIV nay-sayers". The denial angle effectively captures a major negative characteristic.
4. Stop focussing on debating them defensively (I think most of us already have). Start calling attention to HIV denialists as organizations killing people with HIV and people at risk of infection.
5. Start researching and drawing attention to HIV denialists' economic and political power, and the harm it can do. Where do they get thei money? Who are they connected with politically?
6. Start questioning the motives of HIV denialists. What do they get out of claiming HIV is not the cause of AIDS? Money? Self-aggrandizement? Fame? Are reactionary politics the foundation? At the same time, don't make simplistic assumptions about motivations. Different people may have diffirent motivations; one person may be building their journalistic career, another may be coping with declining health through psychological denial; another person may have a complex set of motivations.
7. Start developing a *thought-out*, coordinated strategy for undermining the power of HIV denialists.
In summary, start applying our long experience as AIDS activists to the problem of HIV denialism.
RESIST THE LIST
Seattle, WA USA
Press Release from so-called "ACT UP"/San Francisco:
>>March 27, 2000
>>Michael Bellefountaine: (415) 487-9954
>>David Pasquarelli: (415) 751-7457
>>Todd Swindell: (415) 864-6686
[so-called] "ACT UP" San Francisco Launches Survive AIDS Campaign
Militant direct-action group publicizes tips on surviving the biggest medical scandal of all time
San Francisco -- On Monday, March 27, 2000 the San Francisco chapter of the [so-called] AIDS Coalition To Unleash power (ACT UP) launched its new Survive AIDS campaign. According to activists, the purpose of the high-profile initiative is to undermine unfounded AIDS fear, to expose the unreliability and danger of the HIV antibody test, to prompt an honest debate about the toxicity of new AIDS drugs and to protest the foundation of homohatred upon which the "HIV causes AIDS lie" is built.
[so-called] ACT UP San Francisco is the largest and most active ACT UP chapter in the United States [NOT]. According to their mission statement, ACT UP combats homophobia, racism, sexism and poverty as the true causes of the illnesses grouped together and called AIDS. In contrast, [so-called] ACT UP activists called the present hypothesis that AIDS is caused by the retrovirus named HIV "a complete failure," "a homophobic hoax" and "the biggest medical scandal of all time."
[so-called] ACT UP's Survive AIDS campaign began with a night of aggressive public relations in the Castro. Brightly-colored stickers emblazoned with the phrases "Ban The HIV Test," "Flush Your AIDS Drugs," "AIDS Research Kills Queers," "Tune Out Terror," "HIV Is Homophobia" and "The AIDS Lie Is Anti-Gay" were plastered on bus shelters, telephone poles and billboard advertisements. Each sticker promoted the new Survive AIDS website at www.SurviveAIDS.com where the public can learn more about the controversy surrounding HIV. Soon, interested individuals will be able to access public bulletin boards, chat rooms and a growing archive of information meant to stimulate debate about the cause, identification and treatment of AIDS.
"As an organization whose members are thriving despite being labeled HIV positive, we feel obligated to let the community know how we survive AIDS," commented [so-called] ACT UP member and long-term survivor Michael Bellefountaine. "First, don't bother getting tested for HIV because a virus doesn't cause AIDS. Second, don't buy into federally-funded AIDS fear. Last of all, don't take poisonous AIDS drugs."
According to [so-called] ACT UP activists "AIDS is over!" They are quick to point out that new AIDS cases have been dramatically dropping among all ages, sexes, sexual preferences and racial groups since 1993. Similarly, annual AIDS deaths in these groups began dropping in 1995. Furthermore, they say part of their mission is to inform gay people that according to the San Francisco's Health Department new HIV diagnoses peaked in the city in 1982 -- an inexplicable event for a sexually transmissible virus prior to widely publicized safe sex campaigns.
[so-called] ACT UP members cite the early HIV peak as proof that AIDS-related illness were never an epidemic caused by a contagious factor. They warn it is time for America to wake up from the irrational AIDS crisis mentality that turned a crusade to kill a virus into a pharmaceutical catastrophe that murdered hundreds of thousands of gay men.
[so-called] "ACT UP" San Francisco
1884 Market Street * San Francisco, CA 94102
Phone: (415) 864-6686 * Fax: (415) 864-6687 * Web: www.actupsf.com
When junk science turns lethal
Letter to the Community by ACT UP/Golden Gate
Answering the AIDS Denialists: CD4 (T-Cell) Counts, and Viral Load
_AIDS TREATMENT NEWS_Issue #341 April 21, 2000
ACT UP Memorandum To the United States Congress: Ryan White CARE Act Re-authorization,
so-called " ACT UP San Francisco" and the AIDS Crisis.. June 5, 2000
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