The assertion that HIV does not cause AIDS is preposterous (“‘Don’t Buy the HIV Lie,’” April 2000)! I’ve always led a relatively healthy lifestyle—I was raised a good Mormon, rarely drank, never shot drugs or smoked. I took vitamins, lifted weights, ate well and got plenty of sleep. Still, in November 1996, I was diagnosed with PCP and thrush. My CD4 count was 52 and my viral load was 708,000. That’s AIDS land. And I had never taken a single anti-HIV med. (I didn’t even know I was positive; a test in 1994 turned up negative and was probably wrong.)
I wish all those folks who don’t think HIV causes AIDS would crawl under a rock and disappear forever. They really get my jeans in a knot!
I’d rather that the interview with Celia Farber (“The Most Dangerous AIDS Reporter,” April 2000) be retitled “The Most Irresponsible AIDS Reporter.” As a person with HIV (which Farber is not), I am appalled by her shoddy journalism and the false pretense of her search for truth. I think she’s misleading the public, not about HIV or the cause of AIDS, but about her integrity as a reporter.
Farber’s monthly AIDS column in Spin caught my attention when I read a piece trashing AZT. She conspicuously failed to mention that AZT had already been shown to significantly reduce perinatal HIV transmission (maybe because she didn’t believe in HIV—but what about all of those HIV negative babies?). Farber had, and still has, an AZT vendetta. Given that the prescribed dosing back in the 1980s was nothing short of deadly, I don’t blame her for lashing out. But failing to report important facts is misleading and, therefore, damnable. I never thought I’d be in the position of sounding like I am (God forbid) defending a drug company, but let me tell you once and for all, Celia Farber, you’re wrong.
I am alive and well today because Celia Farber had the guts to tell the truth. I’ve been “positive” since 1985…just in denial, I guess.
Via the Internet
What a fitting tribute POZ presented in featuring Celia Farber, a most thoughtful and dedicated journalist. Although we’ve never met, I’ve admired her courage in addressing, head-on, issues about the epidemic that rarely appeared in print. During my 18 years as CNN Senior Medical Correspondent, I’m proud of having also reported critically on the questionable safety and efficacy of early AIDS remedies, as well as on the legitimate issues surrounding the dominant theory of AIDS etiology. But my efforts were much more (arguably too) conservative than Farber’s frank, thought-provoking inquiries. Our role as journalists, as she pointed out, is to be attuned to professional differences of opinion within the scientific community and to maintain open minds. Scientists themselves are well advised to do the same.
I hope we’re entering a period of sustained, serious consideration of all that is known and hypothesized about HIV and AIDS. The best interests of those living with the disease would be served by those who study, treat and report on it with keen, open minds and respect for colleagues who dare to engage in novel thinking.
La HIV en Rose
After so many years of censorship and ostracism, multifactorialists are suddenly being heard. The POZ “Alternatives 2000” issue was most interesting—from the Celia Farber interview (she’s the best AIDS journalist by far) to the requisite ultraconservative counterattack by Bruce Mirken (“‘Don’t Buy the HIV Lie’”).
The fact remains, despite all the politics, that some of us don’t focus on HIV and don’t take antiretrovirals—and we’ve been here all along, putting up with lots of hateful abuse. The emergence of a Johnny-come-lately cofactor camp, now that protease cocktails have lost their luster, doesn’t give us back those painful, lonely years.
What HEAL leadership must consider is the obvious: The dissident movement puts forth brilliant ideas that can save lives but doesn’t back it up with real-life alternatives, such as medical referrals. The HIV machine has a monopoly on services and support, and holds us hostage. The dissident movement must face this, rather than dreaming of a perfect libertarian world where we’re free to walk away. While I’m just as hurt as Christine Maggiore by people who “sell out,” I can see why they do so. The pressure is intense, driven by stark survival realities. It’s about money.
“The Case of the Missing Cofactors” (April 2000) is great. Bob Lederer did a wonderful job of capturing the essence of the cofactor case and the frustrations of trying to make it. He deserves a great deal of praise. To find open minds that are not also empty minds (especially in the media) is a rare joy.
Indeed, the need for open-mindedness is all the more important in light of the renewed debate over AIDS initiated by South Africa President Thabo Mbeki. Most developing nations don’t have the resources to combat AIDS through the high-tech drug regimens that have characterized Western approaches. It may turn out to be much more economical and effective to address the underlying endemic diseases, drugs and malnutrition upon which AIDS thrives. The lessons we have gained from U.S. PWAs who have refused to be treated according to standard protocols may be critical for informing new experiments in Africa, and the results of such experiments may then cause us to rethink the nature of AIDS prevention and treatment. If so, POZ will have played a major role in reminding us monthly of the many options that still exist, many barely explored.
Professor of Physiology
Michigan State University
East Lansing, Michigan
I appreciate POZ’s coverage of the alternative scene in Bob Lederer’s “The Case of the Missing Cofactors,” although I don’t think the treatment of HEAL or Christine Maggiore in Bruce Mirken’s “Don’t Buy the HIV Lie” was warranted. Mirken’s biases seemed especially apparent. HEAL is consistently vilified; moreover, Maggiore is blatantly referred to as close-minded. What does that make adherents to AIDS orthodoxy? Paragons of open-mindedness? It’s thanks to people like Maggiore that articles such as the one in POZ are being written!
I’m not a personal friend of Maggiore, nor am I a member of HEAL. But it is through their efforts alone that I found the courage and support to “find my own path.” Without them, I would have caved in to the mainstream hype.
Via the Internet
I am interested in therapies other than HAART because I have the so-called supervirus and I’m on what may be my last-chance cocktail. But I’m a little angry about the alternative-therapy profiles (“Alternatives 2000,” April). Who decides the type of information that your readers, other HIV positive individuals like myself, want to read? I want to know more than when these people tested positive and their current counts. What’s the history of their viral loads and T cell counts? What other therapies have they taken?
I tested positive in 1989 and my T cells stayed high until 1995. Then they dropped like a rock—I went from 800 to 80 in less than a year while I hesitated to take meds. I’ve since hopped from one med to another without much success. They all made me sick and couldn’t bring my viral load down to undetectable, so my doctor would say “switch” and I would. If this was five years ago when I still had 600 T cells and a viral load of less than 10,000, I’d be more apt to try alternatives and be happy to have my counts stay in the “safe” zone.
I was happy to read Bruce Mirkin’s “‘Don’t Buy the HIV Lie,’” particularly because I’m one of the “former dissidents” in it. There are, however, a few points I want to clear up.
First, it is stated that I arranged speaking engagements for Peter Duesberg. I did arrange one such engagement for him when I was the administrator of Provincetown Positive/People With AIDS Coalition, but that was it.
The most important point is the confusion surrounding my lover’s seroconversion. In the article, it was stated that my lover’s “only risk factor for AIDS was unprotected sex with me.” This is entirely untrue. Although he had none of the other “dissident” risk factors, such as recreational or pharmaceutical drug use, his real risk factor was a broken condom. When I met him, he was negative. I was positive, and an active dissident, and I didn’t feel there was a need for us to use condoms. However, my lover wasn’t a dissident, so we did practice safe sex. During our first sexual encounter, the condom broke while he was using it. Within two weeks, he tested positive. That was five years ago. I make this point only to stress that my lover’s seroconversion did not result because of any involvement I may have had with the dissident movement. We only had “unprotected” sex some time after he seroconverted.
My experience as a former dissident—one who got sick and chose to take meds—has been difficult. Particularly distressing have been the less-than-supportive responses I have received from people with whom I used to occupy the lectern.
Curb Your Herbs
I’m pleased to see attention paid to the role of alternatives in the treatment of people with HIV (“Alternatives 2000,” April). Our organization, New Hope Alternative Therapy Research, provides a prescribed integrative program adding specific alternative therapies in conjunction with—not in place of—current medical treatments. My problem with the profiles, however, is that the individuals are doing the alternatives instead of medicine. Medicine is a very important and necessary part of treating HIV. We need to educate people about the proper application of alternative therapies in their treatment program. Herbs are a form of medicine, and great care must be taken to monitor the effects when used with HIV meds.
In our facility, clients have an initial intake examination; we then obtain their medical records, and the physician and therapists design the treatment program. Great care is taken to prescribe the therapies that will provide the most benefit.
Telling clients to do massage, acupuncture or herbs without the right information would be no better than a physician taking a patient into a pharmacy, turning them loose and telling them to pick whatever drugs they think they need.
New Hope Alternative Therapy Cleveland
Justin LiGreci’s piece in the April 2000 Planet section (“Battle at Immunesburg”) was absolutely fantastic. He’s a great writer and was able to convey in a few words some of the horror of discovering and fighting an unknown enemy, as well as courage and hope—all from the point of view of a 16-year-old.
I appreciate POZ publishing my tribute to gay political pioneer and HIV advocate Dick Pabich, who died on New Year’s Day (Tribute, April 2000). However, the opening sentence used the word wacky to describe the world of San Francisco politics. That word was not in the remarks I made at Dick’s memorial celebration nor in the draft I saw of the final version you published. It may seem like a minor quibble, but I never have, nor ever would, use wacky to describe San Francisco’s politics. That is a pejorative term commonly used by homophobes when they discuss the success of gay politics in San Francisco. They find our political environment, in which people of diverse backgrounds and orientations openly, freely and fully participate in the life of our city, “wacky.”
We San Franciscans are proud of our open-mindedness and our willingness to debate fiercely, empower the disenfranchised and enact policies that may be too far-out for less-enlightened communities.
The Bad Old Days
Doug Ireland’s “Cheap Veep” (April 2000) made me feel really old. Granted, everything he said about Al Gore’s recent Africa initiatives on AIDS is correct—they aren’t enough. Still, I can’t help but remember the “old days” of the ’80s when we couldn’t get a single administration official to even say the word AIDS, much less give speeches on the subject before the UN. I understand that we shouldn’t be placated by every bone we’re tossed, but I worry that the young and/or politically naïve only remember our criticisms of the Clinton-Gore administration. That’s dangerous in an election year. Let’s not forget that going back to the “old days” when AIDS was politica non grata isn’t impossible.
Too Much Info
The photographs of Paul Lekakis in your February 2000 issue were truly impressive. What a hunk! POZ said “Can’t Stop the Music,” but I say “Can’t Stop Masturbating!” Some people, like me, don’t have a sex partner other than the right hand. It was indeed a relief for me. Keep up the good work!
We’re confused as to why “Jelly Revolution” (March 2000) failed to mention the Empyrean Bioscience microbicide currently in development. We are the only company that employs Oxtoxynol-9 as its main ingredient, which has proved to be both effective and safe in Phase I and Phase II trials. Unlike the nonoxynol-9 products mentioned by reporter Deb Schwartz, ours does not cause irritation or abrasions.
Edward Howard & Co.
POZ responds: We couldn’t mention the more than 50 microbicides currently in development, but we plan to follow promising substances as study results come in.
You Better Work
I tested positive in 1992, and in 1996 I went on public assistance in order to get Medicaid so I could start a drug cocktail. The cocktail was the best decision I ever made, but being on public assistance is a total hassle. The “Work 2000” package (January) opened my mind. I was afraid to go back to work because I don’t want to lose my medical coverage, but I have to make a life for my 9-year-old daughter and me. Now I know I can do it.
New York City
We hear you
About a month ago I found out that I’m HIV positive, so I’m new to your magazine. I was very excited to read about others with my condition.
Needless to say, I’m disappointed in POZ. Everything in it seems to deal with issues of HIV for homosexuals and lesbians. I’m a married mother of four. I am not a lesbian. Not that being gay is bad, but POZ left me feeling more alone than I already did. I thought you might care to hear from someone who’s not an activist, not a homosexual and not a drug user—a minority big-time in the HIV scene.
Via the Internet