Petrelis Files

THE "VIOLENT CARNAGE" OF AIDS

Marilyn Chase, a medical reporter for the Wall Street Journal, has a new book out in stores called “The Barbary Plague,” about the bubonic plague that struck San Francisco in the early 1900s. She appeared on April 2 at A Clean Well-Lighted Place for Books on Van Ness Avenue, for a book signing and discussion.

Having read her stories over the years, especially her articles about HIV and STDs, I was keen to meet her and listen to what she had to say about how this city dealt with the bubonic plague, and, in the process, helped create what we now accept as public health and that it is the responsibility of the state to guard it.

After reading brief excerpts from her new book, she opened the floor for questions and turned the seventy-five minute event into an informative discussion with the audience about plagues, old and new, like HIV, and the SARS problem.

When she called on me, I explained that I was an AIDS activist trying to keep track of HIV statistics in San Francisco and had some data to share with her about those numbers. Like any well-trained, curious reporter, she promised to look at the data. I brought Chase a copy of my opinion column about the missing 1,000 HIV positive test results in San Francisco, with the year-end STD report for the city, which was cited in my column.

I asked her to detail how the health authorities during the bubonic plague kept track of how many people were felled by the disease and how were the number of deaths conveyed to the general population. She gave a short answer about the epidemiology of the time, and, of course, promised me she had more information regarding statistics from the plague years in her book, and that I should read it.

Other audience members were doctors and researchers she knew from her day job at the Wall Street Journal. One of them asked her about HIV rates in Africa and the rise of new HIV infections among gays, particularly young gay men, in San Francisco. Chase’s reply raised the hairs on the back of my neck, because the sub-text if what she said is a lament for more victims.

This is a transcript of her response.

“The other point that you made about a certain spike in the cases of infection, is troubling to a lot of doctors.

“I was interviewing [Dr.] Harold Jaffe from the Centers for Disease Control. Last December he came to town for the annual AIDS update [that is organized by the San Francisco Department of Public Health], and he said that there does seem to be sort of a spike in risk behavior and they’re not sure why, but one of the things may be, in a counter-intuitive way you might not expect, that the advent of better drugs, such as the protease inhibitors have made people feel safe and because it’s done so many good things and has turned HIV/AIDS into a treatable illness, a treatable chronic illness, that for so many people that prolongs their lives. They’ve gone back to work. They’ve regained their weight and they can go to the gym. They’re living more normal lives and it’s caused wonderful improvements.

“But, on the other hand, it has made it, by making the City sort of, a healthier place outwardly [for people with HIV], and by ending the bad old days when you saw a lot of, you know, very thin people walking around or very ill. It means that a whole generation of young gay men have not witnessed the kind of violent carnage the early days the epidemic caused. So some people think there’s a certain sense of immortality.

“What Harold Jaffe said was that it’s much, much harder to talk prevention now, because young gay men have not had the same life experience as their older brethren and they may think that as long as you go out with someone who’s young, healthy like you are, healthy looking, that you’re not at risk. That you don’t have the disease to worry about," said Chase. [1]

What I really loathe about how Jaffe and Chase view the lack of lots of sickly gay men with AIDS and obviously ill hobbling around the Castro neighborhood is how they are sub-textually calling for a return to the good, old bad days when thousands of San Francisco’s gay community were ravaged looking and dying quickly from HIV disease.
It is as if they can’t and don’t want to accept all the benefits of the AIDS drugs, because the medications have a side effect on HIV prevention efforts targeting gay men.

Such sentiments regarding a lessening of the AIDS crisis, get internalized by me, to the point where what I hear is, “Why doesn’t Michael fail his latest AIDS cocktail and appear gaunt, or his body and face riddled with Kaposi sarcoma lesions, maybe even have to use a cane or wheelchair to be mobile? It would be the greatest gift to HIV prevention if we could point to him in that declining condition.”

Not only do I apply to myself what Jaffe was expressing, but I extend his thinking to my inner circle of friends, also people living with HIV and AIDS. I don’t want them to turn into rail-thin poster children for HIV prevention social marketing campaigns funded by the CDC.

Where on earth could Jaffe and Chase get such negative notions about the positive developments associated with protease inhibitors, for AIDS patients? Perhaps they think of such ideas on their own. Or maybe, they are assisted to by gay men running HIV prevention programs in San Francisco, that are failing.

In a notorious June 30, 2000, front page article in the San Francisco Chronicle, the one in which the City’s HIV epidemiologists claimed new HIV infections here were at “sub-Saharan levels of transmission,” an extremely offensive quote appeared that gave license to thinking of healthy gay men, and those afflicted with AIDS, in a punitive way for being vibrant and alive.

The Chronicle said: “AIDS prevention educators said the changing portrait of the epidemic has caused many gay men to let down their guard. ‘We don't have the visual reminders of what it can be like to have HIV,’ said Steven Gibson, program director for the Stop AIDS project. ‘We don't see the wasting syndrome. When was the last time you saw someone with KS lesions in the Castro?’ Kaposi's sarcoma lesions were among the first opportunistic infections seen in gay men during the early years of the epidemic.” [2]

Is the only way to conduct effective HIV and STD prevention in San Francisco, with hundreds of millions of city, state and federal funds, most specifically those grants provided by the Centers for Disease Control, to have men with KS lesions strolling about the streets, on display, almost like a circus side-show attraction, for Gibson and others to use for prevention purposes? Apparently they think so, but the larger gay community needs proven methods of HIV prevention that don’t require more patients taking on a gaunt appearance or decline in health.

Another aspect to Gibson’s question is, how should we view the relative handful of gays with AIDS, who do look clearly to have the disease or suffering side effects of the cocktails, and are in the community and out in the public sphere. How are they to be treated? To me, Gibson and his colleagues in the HIV prevention industry want to exploit these men only for political and funding purposes, which is troubling.

As the days have past since Chase’s discussion, I’ve paid acute attention to men in the supermarket and in the bars and coffeehouses with physical aspects of AIDS and the medicines patients take to stay alive. First, there are quite a few of them, and second, I see myself, and my future, in each of their faces. With each man, I’ve tried to go out of my way just to smile with them and find a human link between us. Call it creating good karma for my future when I look as though I beset with facial wasting syndrome. There can’t be too much compassion for AIDS patients in our midst, and their lives should be treated with the utmost respect from CDC bureaucrats, including and particularly Jaffe, who has been handling HIV and AIDS prevention and surveillance matters for the federal agency since before the disease was even called GRID.

The thoughts Gibson conveyed to the Chronicle three years ago, making it seem like ancient history on the AIDS calendar, aren’t restricted to that time and just to San Francisco, as you can see in this April 6 article from Florida’s Key News, an online news service.

“Some young, gay men have been found to desire infection, largely because they are less likely to have seen the ravages of the disease in the beginning of the epidemic, probably haven't lost anyone close to them and keep hearing how much medical progress has been made in treatments,” the Key News said. [3]

To which I respond: And we want these younger men to experience the ravages of AIDS and lose dozens, hundreds of lovers and friends, and to think if they contract HIV that the drugs to fight it aren’t the hope they’re made out to be by Big Pharma and AIDS Inc, right? That is the underlying message to what the Key News wrote.

One phrase from Chase, her comment about “violent carnage,” sticks in my mind because it so precisely captures what it what like for me and far too many gay men in the 1980s, as AIDS began its killing rampage. Bravo to Chase for using the apt “violent carnage” statement, which is a chilling assessment of where we’ve been, and a place I don’t want to visit again.

There’s got to be better way for HIV prevention strategies to reduce or stabilize new infection rates, without bemoaning the healthy benefits of protease inhibitors, and certainly free from exploitation of AIDS patients.

Chase put on an educational forum, which made me taking the time to attend and hear her speak. And I hope to soon read her new book. I’ve got a reserve on it at my public library. Should be a good read.

Sources:
1. Audiotape of Chase book signing event

2. http://sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2000/06/30/MN105153.DTL

3. http://keysnews.com/335954502191594.bsp.htm