June 20, 2000
B.K. Goldman at The Body: Your book is amazingly comprehensive! There are probably tons of things that you didn't know anything about before you wrote this. What were some of the most surprising things that you learned?
Daniel Wolfe: A few things -- one is how little discussion there has been, in spite of all the information out there on AIDS and condoms, on gay male sexual pleasure. For example, who knew about the Kegel exercise -- designed originally to help women keep bladder control after giving birth, but which also helps put more bounce in your erection, speeds recovery from prostate surgery? Best of all, you can do the exercise while faxing, or sitting in traffic, or in a boring meeting . . . all you do is imagine yourself peeing, and then tense the muscle that would stop the muscle flow. You hold it for ten seconds or so, and sex therapists and Tantric practitioners say that when coupled with practice and breathing exercises, it'll hold the key to the multiple male orgasm without ejaculation. Now that's what I call a gay health movement!
I was also struck by how much men had to say, once you asked them, about spirituality in all its forms. There's a chapter in the book on "waking up inside," but there could easily have been another book, on how men choose to feel themselves connected to something greater than their bodies or selves -- whether that's through organized religion, or different less formal kinds of practices like meditation.
B.K. Goldman: I know that you have been working in the AIDS epidemic for years. Writing about it today, can you describe some of the greatest improvements you've seen and what you see coming down the pipeline in the future.
Daniel Wolfe: The biggest improvement -- treatment that works to keep people healthier longer -- is probably obvious to everyone. It's not that AIDS is over, or that health care access isn't still a problem, but it is true that deaths and opportunistic infections are down, across the board. And the fact of better treatments has opened up a range of discussions about gay health that wouldn't have been possible ten years ago, when we were all struggling to keep ourselves or our friends out of hospital beds or to shout the cure out of a test tube.
B.K. Goldman: In terms of the law, what do you think the greatest strides have been in the last few years regarding discrimination against people living with HIV.
Daniel Wolfe: Honestly, I don't think this has been a great few years in that arena. I suppose the Vermont civil union effort, and all the smaller versions of domestic partnership privileges in towns and cities and companies across the country is probably the most important positive development. Health insurance and how to get it and keep it remains the single biggest question for thousands of people with HIV and other Americans. But I think that there's been a nasty backlash to the good news about AIDS treatments, which is a wave of paranoia -- and discriminatory legislation trying to force HIV disclosure in sex, even if condoms are involved -- about the idea that people with HIV are sexual. Frail people with AIDS in hospital beds are familiar to "mainstream" society. Sexual people with AIDS who are living their lives are a little frightening, and it shows in the law.
B.K. Goldman: I know this may be controversial, but after doing all your research, when do you think people living with HIV should begin therapy? Do you think the whole idea of starting early is dead?
Daniel Wolfe: It was very obvious to me -- and we talked to literally hundreds of men for the book -- that there is no one way to do HIV treatment, or even one definitive source of information. People are capable of -- and should be respected for -- amazingly nuanced decisions about when or whether to start treatment, and why. Certainly, the idea that cocktail therapies are the infallible cure -- all is dead. On the other hand, whether to start depends a lot on when you find out you're positive, how long you think you've been that way (a lot of doctors who are ambivalent about starting early would still recommend immediate treatment for so called "recent seroconverters"), what your situation is at home, and how much support you have. There are a bunch of studies -- and more scheduled for the International AIDS conference in Durban -- that talk about what makes people able, or unable, to stay on their HIV medications, and we talked a lot about strategies for thinking that through in the book.
B.K. Goldman: Why do you think so many young gay men are having unprotected sex? Do you think they haven't gotten the prevention message? Or do you think that with the new meds they think they don't have to worry as much.
Daniel Wolfe: Hmmm. As with treatments, I don't think there's a single answer. Some men aren't using condoms because their relationship with their sexual partner -- whether that's a relationship that's lasting fifteen minutes or five years -- doesn't seem to them to be able to include that. It's too much talking, or negotiating, or it makes them lose their hardons. Some men aren't using condoms -- and most studies don't break out who's positive or negative and what the status of men's partners are -- because they're positive and their partner is and they don't really feel like they need to worry about HIV since they already have it. Some men aren't using condoms because they don't think, if they do get infected, it's as serious as it once was. I don't think, though, that it's as simple as "Oh, new medications, I don't have to worry." Sex really is a dynamic, that takes place with more than just you, and so often it's about not thinking, or thinking about the relationship more than the facts, that goes into that kind of decision.
B.K. Goldman: Do you think the U.S. is doing a good job trying to prevent HIV transmission?
Daniel Wolfe: I don't think most of the prevention efforts in this country realized until about three or four years ago, if they realized at all, that prevention long-term needed to look different than the crisis, condom-every-time model. It's like people living in Sarajevo or Beirut -- even if there's danger, men want to go back to their lives, and so need more complicated discussions of risk and pleasure. Those have been happening, though -- at GMHC, for example, there's been a lot of attention to finding ways of helping gay men talk about sex more broadly, in all its complications, and folding HIV prevention into that. There was recently a four-session workshop, for example, on anal health and pleasure that the Latino group at GMHC, Proyecto Papi, held. I think that's a great model, and one that you're seeing in different places across the country. More generally, are we doing a good job? Of course we are not. Compare the U.S. to Europe, where they have government-sponsored condom ads in subways, where teenagers are allowed and expected to talk about sex, where, in some countries, clean needles are available through nationally funded programs -- and then look at us, the epicenter of the epidemic in the industrialized world, and what a lousy national discussion we have about sex.
B.K. Goldman: You have an interesting section in the book on HIV transmission. You wrote about something called "Q,Q,E," i.e., that the most important thing in HIV transmission is the quantity, quality and route of entry. Can you discuss this?
Daniel Wolfe: Basically, some doctors and researchers help people think about the likelihood of getting HIV by considering those three elements:
I should point out, though, that only the last -- how HIV gets into your body, or whether it does, is under your control as an individual, so that's really where to focus. Especially because the other two -- such as the effect on transmission of having a low viral load -- are still pretty poorly understood.
B.K. Goldman: A lot of HIV-positive people don't worry about reinfection, they have unsafe sex all the time with other positive people because they say reinfection is a theory not a fact. What did you find out?
Daniel Wolfe: This is another area where research is still developing, with more and more reports of people getting infected with other strains of virus and doctors still wondering what the real-life effects of this are on people. However, and this is a big however, you don't have to look farther than the recent outbreaks of syphilis among gay men -- particularly positive gay men -- in Seattle, LA, Cleveland, Chicago -- to see that HIV reinfection is really not the only thing positive people have to worry about when having unprotected sex. Syphilis is not a case of crabs -- it's a serious infection, particularly in people with HIV. But again, these decisions are personal -- one of the lessons of the "old" HIV prevention is that it's not necessarily meaningful to make these absolute declarations about risk. Me, I'm afraid to go skiing. You may not be.
B.K. Goldman: Your section on dealing with HIV is fabulous. You write about six legal documents that every person living with HIV should have. Can you talk a little about this?
Daniel Wolfe: Actually, those documents are useful for anybody facing any kind of health issue, or even people more generally. A few are health care specific:
Some 85% of Americans, including lots of people with HIV, don't have these, because we don't want to think about these painful possibilities, but it won't get easier if you're seriously ill or in physical pain. Other documents are especially important for those of us who aren't in a traditional married relationship, like joint tenancy agreements so one of you can keep the apartment if the other dies, or a will and a general power of attorney that lets one person sign checks and access personal information for another.
B.K. Goldman: What's your biggest tip for reading between the lines of news reports and medical studies about HIV/AIDS?
Daniel Wolfe: The book talks about a bunch. I guess my two biggest would be to remember that every new drug usually comes with a pharmaceutical company and a PR team behind it that's pushing the story forward, so look very carefully at how the news is released. Presentations at conferences, for example, or the more generic "researchers in Argentina announced . . ." usually mean that other researchers haven't had the opportunity to look over the data or see if they can reproduce the results. Which is why you so often see a page one report about a promising new treatment and a page 37 article months later issuing a retraction or qualification.
B.K. Goldman: You also discuss new or alternative HIV treatments. Did you find any interesting treatments that seem to work but which no one knows about?
Daniel Wolfe: Everything in here was something someone knew about, since I'm no researcher and this drew on the wisdom of doctors and alternative healers and "ordinary" men all over the country. But I don't think we "know" fully, as a nation, how unalternative "alternative" treatments really are. The truth is that Americans are going to huge lengths, and spending huge amounts of dollars, on non-Western methods of medicine -- herbs, acupuncture, massage -- and that there is a huge amount of information out there. I can't say I knew a lot about bitter melon extract enemas before I started the book, or even the importance of something like alphalipoic acid for liver problems related to hepatitis or drug toxicities, but plenty of people do. That's why, for all HIV-related treatments, we made sure to provide some guidelines for evaluating alternative and "standard" treatments, and lots of resources for more information. Including you guys (i.e., The Body), of course.
B.K. Goldman: Finally, what a great book you put together! I know you've spoken all over the place. What's been the reaction?
Daniel Wolfe: Very positive, and very different depending on where you're talking. In smaller cities, some men's questions are really personal -- "I've just been diagnosed with HIV, and feel like my friends don't want me to have sex anymore." At the gay and lesbian center in L.A. (and this goes against the stereotype, I guess), one audience member asked about how the book dealt with the role of the unconscious in anonymous sexual encounters. Actually, though, I haven't spoken in that many places yet, and would be happy to go wherever they'll have me. My hope is that this book becomes something like the gay "Our Bodies, Ourselves," the classic women's health book -- a place that helps people recognize the importance of their own knowledge and experience of sexual pleasure, and where that gay part of you can speak to someone else across the pages.
We are pleased to feature two excerpts from Daniel Wolfe's new book, Men Like Us: