By Thom Fowler
February 21, 2003
Ed Wolf has been working in the HIV/AIDS prevention field since the beginning of the epidemic some 20 years ago. He is a writer and a counselor. He creates educational curriculum for public schools and continues to speak on behalf of the AIDS community and advocate for a variety of prevention and treatment models.
Recently, ROLLING STONE magazine published an article about Bug Chasers, men who actively seek infection with HIV. This article alarmed the people who already have a fear of homosexuals and HIV and also the HIV/AIDS prevention community. The article was sensationalism at its best and I wanted to get behind the story. Mr. Wolf represents a large AIDS organization in San Francisco but because we did not have time to go through the proper channels for him to be the official spokesperson of that organization, we talked off the record about his personal point of view.
He had some compelling things to say about Celebrity involvement with social causes, how we, as a society, deal with sex and death, and how HIV/AIDS has not only changed, but changed the way we think about health, homophobia and matters of the heart.
Mr. Wolf wonders how gay men and women come out into a post-AIDS community and as a gay man a generation removed from Mr. Wolf, I don’t remember needing to come out into the gay community. I needed to come out into my life. I think most young gay people are coming out into their life because it is increasingly safer to do so and is become increasingly safer the more people come out and find support in their communities and in the media as we spiral towards a non-homophobic society.
Thom: I grew up after AIDS. I grew up with all this education that I guess your friends didn’t really have.
Ed Wolf: prior to HIV, the worst that could happen if you had unprotected sex is that you would get and STD or you could get pregnant.
Thom: What was it like to be a gay man before AIDS?
Ed Wolf: I was living in New York in the early seventies and went to those first early parades and really had a sense that we were like the civil rights movement, that we were truly a community that was going to make things happen.
Thom: How has HIV changed the way the gay community thinks about healthy living?
Ed Wolf: I’ve worked with people who are driven by the mechanics of sexual desire. Being desired and desiring someone else becomes the overriding validation for who they are. Is that an addiction model? Is that a problem in this person’s life? Probably. In the beginning there wasn’t that kind of thinking. It was about celebration. And a lot of healing. We were people who were beaten with the word “queer” and I am surrounded now by young people who want to say, “This is my queer community.”
Thom: How do you think the gay community should think about sex today?
Ed Wolf: Often times where the prevention messages fail is when we only focus on the harm of sexual expression and that doesn’t work. Because if there hadn’t been any sexual expression, none of us would even be here. That’s so obvious. There is nothing wrong with unprotected sex. There would be no species if there wasn’t unprotected sex. Having unprotected sex with someone with HIV or an STD, that is a health concern.
So that’s why one of the thoughts that I try to keep foremost, is that we need to go beyond asking, “Should you use a condom?” It’s about ascertaining when you are going to use a condom, can you use a condom, do you have a partner who will let you use a condom. What kind of behaviors are you engaging in, do you even need to use a condom. Sex has a personal meaning for the individual involved. I think you need to have a conversation with someone about what sex means to them.
The messages from the CDC and some of the other prevention programs are homophobic because they don’t get it. They don’t get what it’s like to be a little boy or a little girl and hear all these negative things about who you are and then you arrive in a city and you walk into a bar and here’s all these people just like and, oh my god, they actually want to have sex with you.
Thom: What was your reaction to the Bug Chaser’s story?
Ed Wolf: My reaction, because I’ve been working in prevention a long time, is “Where did they get these numbers?” Of course there are people who would not be disappointed if they became infected.
You can be a homeless gay kid on the street, shooting drugs and there is nothing there for you. There are no services. But boy, if you get that all-important HIV positive result, the golden arches of services manifest in front of you. There’s a treatment bed. There’s a hotel room. There’s a really nice volunteer who comes by three times a week and asks you how you are doing.
It’s such a damning statement of social service delivery systems.
It’s too complicated and it is certainly sensational to think there are gay people standing in the corner rubbing their hands saying, “Let’s see, who am I going to get tonight?” It’s absolutely ludicrous.
If I’m at a sex party where most of the men are HIV positive and I’m not, am I a bug chaser? What if I’m sucking cock or being the top? The risks of me getting infected those ways are incredibly small. What if I play in a group with three guys who are HIV positive and they are all doing really well on their medications and they have an undetectable viral load? The chances of me getting it are greatly reduced. You have to keep coming back to context.
Thom: What does a story like this do to the HIV community?
Ed Wolf: For some people in the community its like, “Here we go again. Here goes the media oversimplifying and being homophobic.” It gets this huge dialogue going on.
Thom: Where are we now with HIV/AIDS?
Ed Wolf:We’ve made major strides there. The flip side is, the rate of new infections, especially in San Francisco but also across the country is slowly and gradually increasing and there is a direct correlation between the success of treatments and this idea that it’s not as serious to have it anymore.
Thom: Why is George Bush Jr. all of a sudden interested in AIDS?
Ed Wolf: Isn’t that a good question. We know the Republicans are really tied in with the whole Christian fundamentalist movement where just the idea of homosexuality or having sex outside of procreation is just totally offensive to them. We also know that there is someone in their administration has found out that even though you use condoms you can still transmit a couple of the STDs. I think genital warts and herpes. Even if the penis was covered or the vagina had a condom in it, wherever there was skin to skin contact, you could still transmit. So based on that one area where a condom doesn’t provide total protection, this guy is off and running saying condoms don’t work and we need to go back to an abstinence model. Which is ridiculous. Condoms work very well around HIV and STD protection.
And there has always been this whole dance around abstinence. The CDC tells us that about one-third of all American youth that graduate high school have not had penetrative intercourse of some kind, but the other two-thirds have. So abstinence models work on a third. Which is wonderful. I don’t want to put down abstinence. But what about all the other people who are exploring, experimenting and penetrating. For them, the abstinence model doesn’t work. We have to be able to continue to give people the information they need to protect themselves.
About a month ago, they were getting ready to put a guy on the AIDS commission that was sex-negative and homophobic and the outcry was so loud, so soon, he quickly withdrew his name. So a lot of people are certainly paying attention to what’s going on in Washington. I personally found that very encouraging. We’re not going to have it.
I watched the State of the Union and I was surprised he took time to talk about that. I’m not neutral. I’m a little suspicious. I wonder why they are doing it right now. It almost doesn’t make sense. In general I don’t believe that’s a plank that a lot of Republicans find a lot of value in. Around foreign policy I suppose it can help lubricate the larger agenda of getting other countries to support what we’re doing in Iraq but I don’t know.
There is a movement to try to increase funding efforts for programs promoting abstinence and there is movement to create a faith-based service delivery. For example, money that would go to the San Francisco AIDS foundation would be moved to Catholic Charities or St. Vincent De Paul and let the faith based groups provide services to people with AIDS and HIV.
And of course, the knee-jerk reaction to that is, in general faith-based groups do not support homosexual lifestyles. So why would you want to do that? Especially in a state like California where the overwhelming majority of people with HIV and AIDS are men who have sex with men. We would want service programs to be a community based organization where someone would feel safer to come in and not have to walk through a church to find out if you could get a food voucher.
Thom: Do you think the attempt to shift money to faith-based organizations is a way to further institutionalize homophobia and keep gay people marginalized by the Bush Administration?
Ed Wolf: It’s possible.
Thom: Who gets AIDS?
Ed Wolf: It depends on what part of the country you are talking about. If you are talking about the United States as a whole, it’s about 55/45 with 45% being men who have sex with men. If you are talking about California it’s overwhelmingly men who have sex with men. It’s about behaviors. A primary risk transmission is sharing needles and having unprotected anal intercourse. In general, our population here is what the prevention field calls MSM’s, men who have sex with men. We use that term because a number of men who have sex with men would never consider themselves gay or queer.
[It seems as if only men get this disease but the statistic now is that over half of new HIV infections are in women.]
Thom: Is AIDS still a gay issue?
Ed Wolf: I think its very difficult to separate it out. I think it is inherently part of the gay experience. In Africa, AIDS has not been homosexualized. It’s an equal opportunity illness.
Thom: What celebrities are actively working with HIV causes?
Ed Wolf: Bono, Liz Taylor, Magic Johnson. Elton John. His funding has made quite a difference. I can’t think of them all. I hear people in the funding end of things talk about how HIV is not the disease du jour. [Let’s not forget Madonna – Thom]
Thom: How important is a celebrity presence?
Ed Wolf: Depending on who the celebrity is, I think its profound. I was working in the field when Magic Johnson came out as somebody who had HIV. Every testing state across the Unites States, the following day, the phones were ringing off the hook. An entire group of people who never thought they were at risk were suddenly coming in. That was a turning point, just like Rock Hudson was. Just like Arthur Ashe. The guy who played Starsky, when his wife came out here in California, that was a big deal. It can play a significant role in bringing awareness that this about more than just butt-fucking. This is about a disease that anyone can get if they participate in these two or three activities that can successfully transmit HIV and if they are engaging in these activities with someone who has it.
Thom: What is this experimental AIDS vaccine I’ve heard about?
Ed Wolf: There have been AIDS vaccines almost from the very beginning. They are getting ready to enroll a certain number of people who engage in high-risk behavior in a study and half the people will get the vaccine and the other half won’t. The study will run a year and a half. What they are hoping is that some of the people who got the placebo will actually have HIV while no one in the group with vaccine will have it. They hope to use that to build case for the advocacy of it.
Thom: How do you ask someone to go have unprotected sex and we may have something that will prevent transmission?
Ed Wolf: It’s part of being eligible as someone who has had unprotected anal or vaginal sex in the last six months. You will have counseling like anyone else would, like “What are you doing about your condom use?” “How are you protecting yourself?” It’s not about encouraging people to go and do it. But here in San Francisco we are looking at 800-900 new infections a year. Even the best prevention programs and the most well-thought-out interventions are not going to work for everyone.
Thom: I once interviewed Annie Sprinkle about how we deal with sex as a society and she told me we could eliminate AIDS if it was possible to talk honestly about sex and cum and rubbers in the schools. Do you think education is the key to cracking this disease?
Ed Wolf: I don’t know if there is any way to eradicate it. As someone who does AIDS education in schools, I would agree there has to be a way to talk more honestly and open about HIV with young people. We need to become more sex-positive. I’ve gotten really good to listening to your story and finding out where you are at risk.
Thom: What prevents HIV education from being what it could be in the public schools?
Ed Wolf: In the public schools, there are lot of barriers. A lot of it coming from the home and the school board about this whole idea of who is going to teach your children about sex. Is it us? Is it home? Is it the church? And if somebody is going to teach them, who is that person? Is it going to be some gay guy from the San Francisco AIDS Foundation? I don’t think so. Is it going to be a nun? I’m really lucky, I get to go into schools and talk about it. It’s very clear what I can and can not say. Parents have to sign this thing the day before saying its okay that this man talks to my child about HIV and sexual behavior.
Thom: Why is it so difficult for our society to talk about sex?
Ed Wolf: It is one of the great ironies. We are all very interesting in sex and penetrating and being penetrated and exchanging bodily fluids. The obvious one is that there are a lot of religious, moral beliefs that say that having sex outside of procreation is wrong. Even though we are obviously all doing it. It is a very charged issue. I often say that Stephen King could not have come up with a better horror novel. You create a planet that is not prepared to talk to each other about sex and what it means and then you introduce onto this planet a virus that is transmitted through sexual behavior and create a series a circumstances where people have to be able to talk to each other about this and can’t.
Thom: Walk me through two HIV tests, one negative, the other positive.
Ed Wolf: In the state of California in the state funded sites, you come in, you talk to a counselor, you get information about HIV and you ascertain for yourself if you are doing anything to put yourself at risk and there is anything you think you can do to reduce that risk. We draw your blood, you come back next week and you get your results. Statewide about 99% of the results we give are negative. In the large coastal cities, its about 96%. So the majority of people testing are getting negative results. Every once in a while someone tests positive and that is usually a very intense experience for the client and the counselor.
Thom: How do you tell someone that they are positive and then what happens immediately and in the short term?
Ed Wolf: The ideal model is this: You come back in, I ask you how you are doing, How’s the last week been since you were here. Do you have any questions before you get your result. They might say yes, they might just say, “No, just give me my result.” I would show you your result and say, “Your result has come back positive.” And then, exactly like we did right there. It would get quiet. The counselor shuts up, stays out of the way and lets the client have their reaction. In general people are distressed and need some time to just be with all of the feelings they are being flooded with.
In California, we do confidential and anonymous testing. The challenge with anonymous testing is helping somebody link up services since we don’t have your name or any way to get a hold of you. In a confidential site I would have your name and I would get your permission to follow up with you a couple weeks from now to see how you’re doing. In an anonymous test site we don’t have that. So we are working with new models about how to help people follow through with referrals if we don’t have your name.
Thom: What are the advantages of confidentiality versus anonymity?
Ed Wolf: If you were to come in and test positive and really be blown out of the water by that, if we were in a confidential setting, I could contact you and be in touch. I would be able to follow up with you. With anonymous testing, if it’s truly anonymous, you just have a number. I don’t know you from anyone. The drawback is that there is no way to provide any follow up.
Thom: Wasn’t the early fear that information about people with HIV would be gathered and used against them?
Ed Wolf: Yes. It’s interesting, as an old-time AIDS worker, I am of that thinking. But the longer I work in the field and the long I work in these different agencies I can see the high level with which people protect this information. I’m amazed at how careful people are with this.
There are currently in the U.S. 62 illnesses and conditions that are reportable by name. I had no idea. We are twenty years into the HIV epidemic, possibly longer. We still don’t report HIV. Now we are starting to. It is amazing how disease investigators and reporters have bent over backwards to try to understand that HIV has a different stigma to it. But the time is here now to find clever ways to report HIV results without using people’s names. In the state of California they use something called a non-name code where the results are recorded but not the person’s name. A few states are doing that. Most of the other states have it let all go and said, “You know what. We need to treat this disease like any other communicable disease.”
What they do is report back that Ed Wolf in San Francisco came back with a case of Oral Gonorrhea to the local health department just so we know we have a case of it. And what’s happening in San Francisco as of July 1st this year. We’ve always reported AIDS and that’s how we know how much funding we need for treatment. We’ve never reported the number of people with HIV there are. As of July 1st, that is now happening. But we aren’t reporting by name, we are reporting by a code that is unique to you.
Thom: What is the difference between HIV and AIDS?
Ed Wolf: AIDS is the condition, if you have T-Cells of 200 or less or have one of 27 opportunistic illnesses. And so once you get AIDS, that is reportable. If you haven’t gotten any services or any treatment at all, this is where providers will highly encourage you to at least consider now getting on medication.
These days we call the entire spectrum from HIV to AIDS to possible death, we call the whole thing HIV Disease.
Starting in the year 2005 prevention moneys will be linked to not only the number of cases of AIDS you have in your state, but the number of cases of HIV. So everyone is being asked to adhere to this new policy and to continue to forward these results to the local health department who then forward them on to the state office of AIDS in Sacramento who then forward it on the CDC so we have an actual number of who is living with HIV in the state of California and not just with AIDS.
Thom: How close are we to a cure?
Ed Wolf: The current thinking is the chronic manageable disease model is the almost here. Many people are able to keep their immune systems with these medications. They are still very expensive and they have a lot of side effects but as time goes on they get easier to take, the side effects lessen and we are seeing people being able to use them easier and easier. It might be that someday that people deal with this the way people deal with diabetes. You have to take this medication for the rest of your life.
A lot of thinking is what we really need is have a vaccine.
Thom: With all these positive messages about getting HIV is still a good idea to prevent getting HIV?
Ed Wolf: I think so. We don’t know what’s going to happen. Also we live in a culture that stigmatizes people who have HIV. In general, its not a good thing to have HIV. For some people its not the end of the world.
Thom: How do you feel about people who say AIDS drugs cause AIDS?
Ed Wolf: I think, God bless young queers who are still able to come up with stuff to stir the pot around all this. Good for them. Get out there and picket, let’s keep social action happening, lets keep these dialogues going. But, everyone who dies of AIDS, before the drugs came along, they all had HIV on their chart.
Thom: What kind of treatment is available for people with HIV?
Ed Wolf: Log on to projectinform.com. It lists everything. All kinds of medication out there that are trying to interfere with the virus’s ability to replicate itself while its inside the body.
Thom: I’ve noticed that people often say they really started living when they get diagnosed with HIV. Why don’t people really live and stay as healthy as possible when they DON’T have HIV or any life threatening disease?
Ed Wolf: That’s one of the big questions. It’s part of the human condition. I think part of that is the denial that people with AIDS are going to do something we are all going to do. We are all going to die. 95% of us are going to have the experience of a doctor coming in the room and telling us we have a life-threatening disease. Most people die from disease. Either coronary or pulmonary. Only a few are actually killed in a car wreck. Most of us die from illness.
When people get diagnosed, they get it that they are time-limited. Life is precious. Life is a gift. I’m going to the grave eventually. It makes me value my life more, value my relationships more and value what I’m doing with my life more because its all time limited.
In this culture we are separated form death. We don’t have a lot of opportunities to see it. I’m getting ready to go Africa this summer and one of the things I’m aware is that you see corpses. There are people dead on the street. That just doesn’t happen here. We are separated from this reality. That’s why AIDS is uncomfortable for people. It brings death into the dialogue.
Thom: How do you think that you can separate from sex and death affect our collective personality?
Ed Wolf: I think it increasingly leads to isolation and separation. Here we are, we join clubs, we create groups, we form nations, we build churches. We find all these ways to connect. Yet if there is one unifying experience we are all going to have is that we all die and most of us have sex and are interested in sex. And it isn’t ironic that sex and death, even though it unifies us all, are the things that are so uncomfortable for us to talk about.
Thom: Where did we lose that connection to sex and death?
Ed Wolf: I think it’s all institutionalized. Some would trace it all the way back to the coming of the missionaries. And this whole Judeo-Christian way of looking at some things as good and some things as bad and some people are good and some people are bad and some acts are good and some acts are bad. And then its easy to say that some nations are good and some nations are bad. The whole pagan way of looking at things is much more involved in the duality of things. A person is good AND bad.
[And I swear I didn’t see this coming … but I guess lots of people are talking about what to do about the world when our leaders aren’t taking us anywhere we want to go – Thom]
It’s not just the AXIS OF EVIL. But it all gets institutionalized this way.
Thom: Being disconnected from sex and death is like being disconnected from life itself.
Ed Wolf: Oh God, yes. It is where all life comes from and it is where all life is going. How’s that for a bumper sticker?
Thom: If we aren’t connected to life, what is it we are connected to?
Ed Wolf: In our country, one of the main things we are connected to is our bodily comfort hence the emphasis on and drive of greed. The main thing is we want to be comfortable. And we want our hot water and our SUV’s. We want our wonderful retirement. We want our little house in the country and our home in the city. We want to be comfortable.
I do a lot of backpacking. I’m amazed at the lesson there is when you are really out there. Miles from your car and four days until you are going to hot water. You realize that this how the majority of our ancestors have lived. Nomadic. Walking across the face of the Mother Earth looking for water and looking for something to eat. No wonder all of those early pre-Christian religions were about honoring the mother. The wind becomes a god. The sun becomes the king. It’s just so obvious to see how all that happened. And then we all moved indoors. We’ve got our cars and air conditioning and layers of clothes.
And so we end up separating. In Africa, you rely on the village. You all have to depend on each other because there aren’t all these resources.
Thom: How do other cultures with other cultural beliefs and world-views deal with HIV/AIDS?
Ed Wolf: I’m sure that in some cases that is true. I’m not very knowledgeable about that. Increasingly, it’s one great big global culture. How do other cultures feel about death? Is it seen as a bad thing? In our culture, just the simple act of crying and being upset about something makes a lot of people uncomfortable. If you start crying, pretty quickly, I’m going to get over to where you are, put my hand on you and tell you it’s going to be all right, keep a stiff upper lip.
I think there are other cultures where that is not the case. Where people would see you crying about misfortune that you’ve had as being very healthy and healing. It is seen to be negative to be sad, to be crying, to realize that you are going to die someday. When of course, you see that its not bad at all. It’s part of the experience. You find love and you lose love. Life comes into your body and then it goes. Some days you laugh, some days you cry. One is not better than the other.
Iraq is not all evil and the United States is not all good. Life is much more of a duality than our institutions can hold. It’s about paradox. I remember going on a meditation retreat and there was a poster that said, “Paradox is the only basket large enough to carry truth.” The truth is that we all get to live and we all get to die and some of us can only be here for 7 days and some of use will be here for 70 years.
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