The following is a transcript of an interview with BJ Stiles. Download Audio file of BJ Stiles interview.
Dusty: So I wanted to talk to you a little bit about your background with the HIV/AIDS advocacy movement, in particular. You’ve dedicated much of your professional career to helping non-profit humanitarian organizations, and you’ve been a friend to the underdog, a companion to the powerful, including senators and presidents. Perhaps your most rewarding work has been as a leader in the HIV/AIDS advocacy movement. There’s a new generation who may not be aware of what transpired during the early days of HIV/AIDS in America, and I would love for to share your insights regarding your advocacy work, what are you most proud of, and what has withstood the test of time.
BJ: Well, those are fascinating questions, and I’ll try to stay focused, and try to respond in the context of, it’s now 2010, and if I, or people I care about, were directly affected by lung cancer experiences, my life experiences, and AIDS experiences would be relevant. I am also sobered by the context of your questions, because it reminds me that in the third or fourth international AIDS conference that I attended, one of the speakers said, “for those in the audience for whom this is not your first conference, but your third or fourth conference, would you hold up your hands?” and I would say twenty percent of us held up our hands. And he said “Thank you. Welcome to the class of the Neanderthals.” (laughs) So, it is amazing when you get involved in something as gripping and powerful and challenging as AIDS was and continues to be, and as lung cancer is, you tend to lose, I tend to lose perspective. It just feels like the work of today and the challenges are just so enormously pressing, you tend to lose a little bit of awareness of the past. The thing about AIDS, and what I’ve learned about lung cancer, that is paramount, is that for many, many people, the word itself – the words ‘lung cancer’, the words ‘HIV/AIDS’ – strikes fear in the heart of the listener. Fear, because of the awareness that this is not only a life-threatening physical illness, it may, in fact, be tantamount to a death sentence. It also, the words themselves, and those of us directly known to be engaged in addressing such diseases, we quickly encounter the stigma that comes with the disease, the word, the people directly affected. The stigmas are similar, though the patient group is extraordinarily dissimilar. I’d quickly say also that all of my memories and most of my experiences inevitably stem around media attention. It is the media that helps to educate and inform all of us about something that’s dramatic.
Dusty: That’s very interesting.
BJ: And so, from the earliest stages of HIV disease, the media did pay attention, and the media probably focused mostly on anger and distress, and people who were loud and screaming about the lack of care and support. And though that may have discomforted a lot of people, nevertheless it gave all of us the chance to understand—this is a horrible disease, it’s a horrible experience. You don’t go through this rationally all the time, and you certainly don’t go through it peacefully. So, when I got involved, I was almost 50 years of age. I knew almost nothing about public health. I knew people who were reportedly gay or bisexual, but I really came as a newcomer to the epidemic. And what I really experienced quite early and for a long time is that a lot of the mainstream tended to be judgmental; many, many people were scared…
Dusty: I’m sorry, when you talk about ‘mainstream’, are you talking about the mainstream media, or just the public?
BJ: The mainstream culture, social clubs, religion, politics… you know, the mainstream.
BJ: And the media understood that, but I think a lot of the reporters, and some of the media leaders began to see—this is an important story and we need to make it as visible as possible. But part of that early experience, that I have now learned is also shared by lung cancer patients, a lot of people immediately want to blame the patient, the victim. A lot of people immediately say “oh, I didn’t know you smoked.” That’s the sort of paramount association that so many people have with lung cancer. There was probably greater, equal if not greater, fear in the early days, because at least in America, the earliest individuals in communities devastated by HIV disease were urban gay men, and gay communities, and so that tended to further offend or stigmatize so many people.
Dusty: BJ, with your involvement, could you put it in perspective as far as, where was America with AIDS? I know in the early days, and I can’t remember now what years those were, but there was just terror—everyone was afraid that they could get AIDS and die. At what point did you join the movement?
BJ: The first awareness about HIV was June of 1981, in an article in a medical journal--MMW 4—reporting diagnosed cases in Los Angeles. It took me maybe a year, year and a half, to kind of overhear people speaking very quietly about this horrid epidemic that was taking place in New York or Los Angeles. I was, at that point, an official in the Council on Foundations, and I worked very closely with leaders in major foundations, many of which were principle funders of health issues—the Robert Wood Johnson Foundation, the Carnegie Endowment, et cetera, et cetera… And I began to be curious; as a former journalist, I’m curious about what’s going on here, and every time I would ask one of my colleagues in philanthropy about it, if we were in their office, they would get up and they would close the door, and instead of looking at me directly across their desk, they’d sort of turn in their chair and look out the window. Basically, it was a pattern of avoidance and discomfort. And that evoked a lot of curiosity from me, and I decided I wanted to learn as much as possible. So I started going to meetings, and went to New York from Washington D.C., and I actually became a volunteer at the Gay Men’s Health Crisis, and went through their volunteer training program. And that’s when I first knowingly met people diagnosed and suffering with late-stage disease, with what became known as AIDS.
Dusty: And that was in what year?
BJ: 1983, so I came…
Dusty: That was still very early, very early.
BJ: … to awareness maybe two to three years after public health people and others were already addressing it. Not, four or five years later, around the awareness of Rock Hudson’s diagnosis, and I had quit my job. I had become a freelance consultant, I was invited by Dr. Mathilde Krim in New York to work with her and her AIDS foundation. And when Rock Hudson was speculated to be suffering from AIDS, efforts began to create a unified national AIDS response. And Dr. Krim, through doctors in Los Angeles, were led to a meeting with Elizabeth Taylor. Dr. Krim invited me to go to Los Angeles to join her. I vividly recall, of course, the sensational experience of meeting Elizabeth Taylor in her home. And very early in the conversation, Elizabeth Taylor looked at Dr. Krim—Dr. Krim is not a medical doctor, she’s a PHD, and research scientist—and Elizabeth Taylor looked at Dr. Krim and said “Dr. Krim, tell me, can you get AIDS by kissing somebody?” (laughing)
Dusty: (laughing) Well, but we didn’t know, we didn’t know.
BJ: Such an important question for Elizabeth Taylor to ask, because you can imagine, thousands of people in the Hollywood industry were quite anxious and frightened about it. But anyhow, I learned very early in my volunteer training program, people were scared to share eating utensils, people were scared to drink out of the same glass, people were basically frightened about even being in the same room with somebody affected by AIDS. And as you and others may remember, but young people would be horrified to see, in fact, in the early days when people were admitted to the hospital, the entire hospital personnel would walk into the patient’s room dressed in full protective garb. I mean, they looked like they had just stepped off a spaceship. We’ve come a long way, but …
Dusty: Yes, thank God.
BJ: But fear, and judgment and being scared to talk about it, being scared to address the subject, and really being afraid to be with a person dealing directly with the epidemic, that’s what it was like in the mid-1980’s.
Dusty: Well, fortunately, I don’t think many folks are afraid of being contaminated by someone with lung cancer, and getting infected with the disease, at least we’ve got that going for us, I guess you could say. But today, you have come so far with AIDS research—that you might not be aware, I’m not sure---but we have more Americans this year, who will die…more Americans, rather, who never smoked, who will die from lung cancer than will die from AIDS. And that’s, that’s amazing when you consider, when you used to get AIDS, it was a death sentence. And now, they’ve got drugs and they’ve advanced so much, and although there’s a struggle, and I’m not saying there’s no stigma, but there have been such major advances with that disease. Yet we’re still lacking, and lagging behind with lung cancer.
BJ: And what I’ve learned in my limited involvement with those of you in the forefront of lung cancer advocacy, more and more people are diagnosed who are younger. So there is an opportunity to address their disease before late stage, and also not only are non-smokers, but they have led really quite healthy lives, you know, good diet, and good exercise, et cetera. So there’s a phenomenon about lung cancer which reminds me of the early days of HIV. We knew so little, and there was regrettably, almost no real research. I think that’s changed now, but I know that there is still a paltry amount of real research dealing with lung cancer—its origin, its treatment...
BJ: …you know, its patient load. So, we’re tragically and regrettably in a primitive stage of knowledge and meaningful research about lung cancer.
Dusty: Well, you mentioned that the most effective method for really communicating about AIDs, and maybe I misunderstood you, but you said the media was really key, and I just wondered, in communicating your message about HIV/AIDS, and advocates today, lung cancer advocates, communicating our message, what techniques were most effective for you, least offensive, and what mistakes were made or lessons learned?
BJ: Really, an important question. I’m not sure I have much wisdom about it. But I think it’s really important for those of us who are in advocacy leadership positions, I think it’s important to recruit and utilize messengers, and we’ve got to look for every opportunity possible to find the spouse, the friend, the teacher, the person closest to the patient, to bring them into our team to be educators and informers. And it’s not really all about celebrities. There, early on, was a local story in Indianapolis, about a teenager, a hemophiliac, at age 13, who was harassed and denied going to school because he had AIDS. And that story got catapulted, and guess who read the story? Elton John. And Elton John at that point literally, kind of adopted Ryan White and his parents, and became a supporter, et cetera. So, without limited media human interest story about Ryan White as a school kid, who had been discriminated against, Elton John wouldn’t have known about it. So, though the media will always jump to revelations about Rock Hudson or Peter Jennings, or, you know, other really prominent people affected by AIDS or lung cancer or whatever, there are also numerous small-town unknown unheard of people who can become our allies in telling the story.
Dusty: That’s a very good point, and I’m a former journalist myself, and it makes me think about, you know, even if there’s not an Elton John, or someone to take that news story and make it world-famous, there’s also a change you can make in that community, and that’s, that’s very important.
BJ: That reminds me, and I want to share a little about how Rotary International has become a major ally of HIV, but before that, you asked a really important question, and it’s a hard one for all of us to really answer. What are the mistakes we have made, and what have we learned from them? I think the mistake that is underlying all of our tactical mistakes is our inability to harness our own egos, and to try not to promote ourselves, and to remind ourselves we’re promoting the need, we’re promoting the opportunity. We’re trying to tell a story to evoke and attract support from others. It’s really not about us; it’s about the other people who are directly engaged, severely impacted, and who need to be heard and must be respected.
Dusty: Mm-hmm, very good.
BJ: I’m reminded, and I think this would have been 1987, a colleague at the Centers for Disease Control called me up and said “BJ—do you know about the Los Altos California Rotary Club?” and I said, no, why? And she said they have just, they’re finishing a video about how AIDS has affected them, and what they’re doing about it. And I would encourage any listener to Google and look up the Los Altos story. It is a story about a small rotary club, where, when the president, Dude Angius, learned that his son was very ill and came home to die, the Rotarians decided to make a film about the Rotarians and the Dude Angius family. That video has now been translated into numerous languages around the world, and responding positively to HIV/AIDS is something that Rotarians and Rotary Clubs literally around the world are doing. Now, once you can get any group of people that well organized with that many connections to care about your cause and your organization, you have allies and you have enlarged the team.
Dusty: Rotarians apparently are very, well, civic-minded, and I also made a presentation at the Rotarian club here, and there was a member there, who, well, he passed away last year, but I appreciate their willingness to listen to my story, to our story, so that’s good to know. So, let me ask you, unless you have more you wanted to talk about with the media…
BJ: I think it’s just a little theme for me is the opportunity to accentuate the power of others. It’s not us, it’s really what other people know and can do, and how we can be allies in helping them tell their story.
Dusty: Now, so just generally speaking, I just wanted to find out what advice do you have for those who want to make an impact with regards to lung cancer advocacy, whether it’s media, or whatever you think it might be, what advice would you give us?
BJ: I think the hardest thing we’ve all learned is how to stay focused. It’s so easy to get distracted with other things and to get overwhelmed, and I think particularly when you’re acting solely, or in a small group of people, and you don’t have much, many resources. It’s really important to sort of wake up every morning and say—what is my opportunity and task today? And how do I go about getting it done? And how to I go about finding other people to be part of a team? How can I invite and incite other people to be an ally on my particular cause? It’s natural to both get overwhelmed, and sometimes it’s also tempting to really get discouraged, feeling like we’re just not making a difference, or we’re just not getting enough resources. . .
Dusty: Mm-hmm, spinning wheels or whatever…
BJ: And so I say the real challenge, you know, for all of us is how each of us can remain positive, and be optimistic, and to celebrate our achievements, and to keep enlarging the team of people with us and around us determined to find solutions, determined to provide more information and education for early diagnosis and how to be more supportive of expanding meaningful research in this field.
Dusty: That sounds like very inspiring words of wisdom, BJ. Now, when you mentioned early diagnosis—that is something we are really lacking with lung cancer, and that’s why, with this organization, this non-profit, we’re really hoping that we can inspire research that would lead to early detection. There’s no screening. And, tell me, if you don’t mind, what do they do for, how do they detect HIV/AIDS? And how long did it take to get some early detection for that?
BJ: Well, as I recall, it took about a year and a half to develop blood screening as we know. The HIV virus is transmittable through bodily fluids, but particularly blood and semen. And because very early among the most quickly affected and early to die people were hemophiliacs, then it became clear to scientists and medical people that therefore there was something in the blood supply. And so the American Red Cross, and other people, really poured massive amounts of dollars into analyzing blood, and that’s when the contaminated blood was found. And finding that is a lot simpler, than trying to find in your body, or my body, any syndrome or any early indications of a disease which could eventually become lung cancer. So the two diseases are extraordinarily dissimilar in that respect. I think, however, at least among the two friends I have known who have been diagnosed (with lung cancer) and have subsequently died, both of them were non-smokers, both of them were extraordinarily healthy women in their late 40’s. I’d say, these days, almost all clinicians, and most females understand that value of mammograms and early diagnostics and all of that. Diagnosing lung cancer is radically different from diagnosing breast cancer, but it’s not different in that each of us needs to know our bodies well enough that if we are affected by some health difficulties, we need to press our clinicians to explore, we need to remind the doctor that there are some possibilities that you might not think about. So an educated patient is probably…
Dusty: You’ll be your best advocate with the doctor.
BJ: Yeah, and you know, these days, when at best you may get nine minutes with your doctor on any matter, I just think it’s really important for us to be aware of some symptomology, that may not be lung cancer, but that we need to pay attention to—lack of energy, shortness of breath, coughing, so on and so forth…You know, don’t drive yourself or your doctor crazy, but…
BJ: You know, help your doctor be aware that you’re concerned about a condition you don’t understand yourself and you want the doctor and his or her team to be an ally.
Dusty: Good advice.
BJ: I don’t think we know anything about prevention of lung cancer, other than the standard, don’t smoke.
Dusty: Right. If you do smoke, quit. Well, B. J., I want to thank you for all you’ve done, for humankind, all the work you’ve done, all your life, I appreciate it, and on behalf of everyone else, I just want to say thank you for what you’re doing, and what you continue to do. Thank you for speaking at the National Lung Cancer Partnership Advocacy Summits. You’ve counseled us. And you’ve given us your advice. And you’ve made yourself available to me here today. And I’m going to be calling on you in the future as well. You’re just a wealth of information, and I appreciate all that you do, and all that you have done. Thank you very much.
BJ: Well, thank you. It is a privilege to be allowed to serve, and it’s an honor to be part of such a wonderful team of people, so thank you.
Dusty: You have a great day, and God bless you, B.J.
BJ: Thank you.