Being Alive; May 1997
Walt Senterfitt

"There are lots of organizations dealing with prevention. Being Alive and PWA self-help groups should concentrate solely on the needs of PWAs and hiv positives." "Sure, I am responsible in my personal behavior so as not to transmit the virus further, and so is everyone I personally know." "Hey, prevention is mostly the responsibility of the negative person, to make sure he or she protects him/herself according to whatever standard s/he chooses." "Anyway, targeting positives for prevention will add to our stigma. You might as well put the scarlet letter "A" on our foreheads or crotches."

Sound familiar? Well, I think it's time we revisit and consider revising any of these attitudes that still lurk. Consider revising, you'll note I say. Here are the reasons why I have. See what makes sense for you.

New Treatments Are Changing Things, But How and How Much?

Highly active antiretroviral therapy (HAART, the new generic term for combination therapy of whatever particular drugs that has the potential of reducing hiv viral loads to undetectable level) has brought tens of thousands back from the literal edge of death (the "Lazarus syndrome") and has prevented, thus far, many thousands more from progressing toward aids or severe OIs. People are feeling better, looking better and many are more interested in sex, and perhaps drug use, than they were earlier. For some, there's an understandable rebound from years of self- or illness-imposed restrictions on our behavior. There's a desire to forget about the damn virus for awhile!

I recently noted a new (to me, at least) phenomenon among gay men of either serostatus: the emergence of unprotected sex as a sexual fetish. It even has a name, "raw sex" or "barebacking." I've seen aol chat rooms devoted exclusively to "barebacking," and cruising profiles which say nothing about hiv status but do specify that they are only interested in sex that involves fucking and coming without condoms.

Some are deciding, consciously or not, that they can totally or mostly relax their guards against the possibility of infecting someone else with their behavior. "Safe sex isn't so important anymore, because transmission is not nearly so likely if my viral loads are undetectable." Besides, "a lot of negative guys are telling me they are not so worried about getting hiv now that real treatments are available, and people are talking about a cure." Both these statements are probably literally true, to be honest. But are they enough to permit us in good conscience to change our behaviors away from whatever safety standards we had chosen to observe?

I don't think so. First, the correlation between viral load in the bloodstream and in the semen and vaginal/cervical fluids is far from perfect. Scientists, now beginning to look in earnest at this more than ever before, are finding many instances where the level of one is higher or lower than one would have predicted. Furthermore, one's viral load can rebound to high levels very quickly if one is no longer able to take or tolerate effective medications. Behavior habits that we change under one set of conditions are likely to persist into new ones.

On the second point, as I explained to a friend the other day,"Yes, I am delighted that new therapies are hopefully going to save or extend thousands of lives. But I know that they are failing for a large number, and even more will fail before new ones are fully on line. Furthermore, I know that the attitudes of someone who now says he doesn't care about getting infected is quite likely to change after he is in fact infected. I don't want to be responsible for even one new infection if I can help it."

Resistance and Reinfection

There is new evidence that drug-resistant strains of hiv are now being transmitted to previously-uninfected people by positive folk. It doesn't necessarily result from non-compliance (another whole issue), as the virus mutates prolifically in one's body even in the absence of any antiviral drug. However, this phenomenon is now being documented at a significant level (as high as 20% in one study) among the population. Getting a resistant virus from the get go certainly gives one a handicap in considering treatment choices later.

The question of whether resistant virus transmitted from one positive to another is a significant risk is an open question. I used to let myself off the hook about this one by saying, correctly, that its widespread occurrence and clinical significance had never been documented. That statement is no longer quite true. New studies are showing that "superinfection" with new and more virulent or drug-resistant viruses can and does occur, though how often and with what consequences are still to be determined. However, given especially that most readers of this will have been infected originally by getting fucked and that's the kind of sex we might dream of resuming unprotected, the growing possibility gives one pause.

In other words, there are reasons of biological self-protection to weigh as well as those of conscience and altruism.

Not Just Individual, But Social Consequences

There are legislators and public health officials who now say that the focus of prevention efforts should switch from general or targeted efforts to getting the uninfected to protect themselves. They argue that the new treatments give added weight to the early detection of hiv through widespread availability of easy-to-access testing (I wholeheartedly agree). Some argue that community-based prevention programs should be scrapped in favor of finding every hiv-positive person and ensuring they are being treated to the point of viral load undetectability. A number go so far as to say that new treatments justify even compulsory testing (no way!) and removal of many protections of our confidentiality (ditto!) so that every potential sex partner knows if a partner is infected or not.

We must bestir ourselves to become aware of these debates and proposals in order to intervene with a perspective that humanely protects ourselves and our positive sisters and brothers as well as those who are not infected. That provides treatment and support for all without coercion. If we don't act, then others will prescribe for us policies which will dramatically impact our lives.

Furthermore, the moral authority which has been invaluable in obtaining unprecedented levels of governmental support for research and care will be quickly eroded if we are arguably perceived to care nothing about the larger society and only about personal freedom.

We Need Open Discussion and Research In This Area

I assert that we each very much need the assistance and support from each other that an open discussion of prevention issues can provide. None of the questions is easy, as we all too well know. "Should I date and play only with other positives?" "When should I disclose my serostatus?" "What level of protection do I need to maintain with my negative partner?" "Can I drop safe sex guidelines with another positive partner?" "How should I tell sexual partners I had before I knew my hiv status, or after realizing I may have exposed them?" "Is oral sex really safe, pretty safe or moderately unsafe?" "How can I regularly and consistently do what I know I want to do when I'm thinking quietly alone?"

Some of these need to be answered or informed by more and faster research. It won't happen if we don't advocate for it. Some of them can only be done through trial-and-error, non-judgmental but non-evading discussions among ourselves.

There's Money In the Picture

The CDC spends more than $650 million a year on hiv prevention programs. Currently, very little of that goes to programs for or by hiv-positive people, but the need to do so is being increasingly recognized. Established researchers and community-based aids organizations will be only too eager to snap up these redirected funds to replace other funding that is declining. Some of that will lead to useful work, but should we let it all go that route without our participation and oversight? Why don't we get involved as PWAs, as positives, as self-help organizations like Being Alive/Women Alive, in deciding how this money is to be spent? Why don't we design some programs that we think will work well, and work best if run by and for infected people ourselves? (In fact, Being Alive in a consortium with the Gay and Lesbian Center and minority-community organizations has already begun to plan such a programbased on telephone chat lines and drop in groupswith funds made available by the Los Angeles City AIDS Coordinator.)

What Next?

I have a few ideas for starters, but I know some of you can do better: Learn about the pending legislative bills that have frightening risks and oppose them. Contact your legislators, or create grassroots lobbying efforts aimed at many legislators.

Do the same thing about the good bills.

Come to the next meeting of Being Alive's new Treatment and Research Advocacy Committee (TRAC) at the Silverlake office on Thursday, May 15 at 6:30 pm.

Keep a diary of your own experiences relevant to these and other prevention issues, for sharing in groups or on paper.

Write an article, describing personal experience and/or arguing a position, for this newsletter, for Women Alive's newsletter or for that of APLA or another organization.

970501
BA970501

Copyright © 1997 - Beings Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069, Tel - 310.289.2551; FAX - 310.289.9866; Email: BeiAlive@aol.com  http://www.beingalivela.org/