One-on-One with Dawn Averitt Bridge
Wife, mother, and advocate for HIV-positive women
Interview by Jeff Berry
Dawn Averitt Bridge, who turned 40 last December, was diagnosed with HIV in 1988 when she was just 19 years old. Her doctor had never diagnosed another woman and had no idea what to expect, other than that an HIV diagnosis at the time meant a life expectancy of about six months. Dawn’s first goal was to make it to her 20th birthday. She is now happily married with two daughters, Madelyn Grace, 7, and Sophie, 5, both of whom are happy, healthy and HIV-negative.
Dawn sat down with PA recently to talk about her family, her dreams, and her life’s work—educating and empowering other women with HIV, and letting them know that they are not alone.
Jeff Berry: Have you talked to your daughters about your status and having to take meds? Is it something you’ve discussed with them yet?
Dawn Averitt Bridge: I’ve never hidden it from them, but I also haven’t focused on it being extraordinarily unique—it’s their “normal.” About two years ago, Good Housekeeping did an article on my choice as an HIV-positive woman to have children, and I focused on my whole family in a way that I hadn’t let play out in the mainstream media very much. It was really a hard choice for me to make, because we’d just moved to this small, rural community in Virginia, and Maddy was all of four-and-a-half, and I realized that, although I had made the choice to be a very public person long before they were ever around, having the kids really turned that on its ear. I had to do some serious soul-searching, figuring out what was important to me, and what was fair to them. I was [already] out [about my status], so perhaps the best thing I could do was reinforce for my children that there was nothing to be ashamed of. So, kind of take it head on, and deal with people’s fears, and unfortunately, at times, their anger, or dislike or bigotry, or whatever we want to call it.
So I had to tell Maddy and Sophie—Sophie was only two-and-a-half, so this was a very short conversation with her—but I had to tell Maddy a little bit more about HIV. Maddy is this little redheaded, pixie-faced artist, an old soul, if you will. And she’s sitting in the back seat of the car, and I say, “Hey, Maddy, so you know how you see Mommy taking medicine?” And she said, “Nope.” [Laughs.] And I thought, oh, c’mon, your two-and-a-half year-old sister reminds me if I haven’t taken them. But of course, she wasn’t going to give me any room, so I thought, okay, I’m going to have to come at this from another angle.
[After they spoke, Dawn said it was a huge relief to have finally had “the talk” with Maddy, but she realized that it was just the beginning of an ongoing conversation that she would be having with her for the rest of Maddy’s life.]
JB: So how did WISE and The Well Project come about?
DAB: WISE was a completely separate entity from The Well Project [TWP]. Basically, when I was diagnosed my doctor said, “Don’t read anything, it’s too confusing, and don’t tell anyone, because it will ruin your family’s life.” And I took that advice for a number of years. I finished college, and went to D.C. and worked for a U.S. Senator, and it was there where I discovered what grassroots advocacy and activism truly was, and decided that I’d rather be on that side [laughs].
It was actually during the whole gays in the military debacle that I was on the receiving end of ACT UP and Queer Nation, and all of these other advocacy groups. Of course, nobody knew that I was HIV-positive. I was also progressing fairly rapidly with the disease, and not tolerating treatment very well, and decided that I wanted to be back in Atlanta, closer to my family, and wanted to shift from government to working in community-based organizations. A friend of mine told me there was a position open at the Atlanta chapter of the National Association of People With AIDS [NAPWA], which became the AIDS Survival Project, and it would be really awesome to have a positive woman as the treatment resource specialist. Which was a complete joke—I knew about five things about HIV. I knew I had it and I knew more T-cells were better than less T-cells. So I spent a weekend cramming and memorizing the whole Project Inform [PI] opportunistic infection chart, and I marched in there with my pumps and pantyhose, to this beleaguered set of queens who were sitting there looking at me like I’d just been sentenced to community service. And they said, “Why are you here?” And I had to say, “Well, I have HIV too,” and they were shocked. I quickly blurted out every infection; viral, parasitic, bacterial, and fungal, which of course was relatively useless information, but it meant that I was trainable. Remarkably, they hired me as Treatment Resource Specialist, and they didn’t even change the title. That was the early nineties, and the learning curve was extraordinarily steep. I found myself in a lot of places I probably had no business being, because I was a complete anomaly. I was a middle-class white girl from the South who was interested in the science. I found myself on everything from FDA advisory panels to NIH task forces and all kinds of things.
“I marched in there with my pumps and pantyhose, to this beleaguered set of queens who were sitting there looking at me like I’d just been sentenced to community service.” Within about 12 months, I realized there was nothing out there for women, certainly nothing on treatment. I wrote my first grant overnight, and it got funded. In 1995, I launched WISE [Women’s Information Service and Exchange] and, to the best of my knowledge, we were one of the first group to focus on treatment information and advocacy specifically for women.
I merged WISE with Project Inform [in San Francisco] in 1997 and then, all of a sudden I was about to turn 30 and I’d lived with HIV for 10 years. So I decided to act out a childhood dream and hike the Appalachian Trail, from Maine all the way down to Georgia, which was a 2,200 mile journey, with my five-drug combination in tow. On that journey I spent a lot of time thinking about what had worked and what hadn’t worked, in terms of reaching out to and mobilizing women and developing new treatment advocates. And what came out of it was a series of regional focus groups that ultimately gave me what I needed to develop a web portal that would service the whole spectrum of people involved in HIV disease management, so that people had tools for communicating about the challenging issues involved in living with HIV from a whole person perspective. What came out of that was The Well Project web portal, launched in 2003, and at the same time, we launched the Women and HIV Think Tank, which has now become the Women’s Research Initiative [WRI] on HIV/AIDS, a year-round initiative that has done some really amazing stuff, working with the FDA, and the companies, and research in general, and that’s all kind of fallen under the rubric of TWP.
JB: I understand you just got back from a meeting of WRI—anything come out of that meeting that was exciting, that you’d want to share with our readers?
DAB: Yeah, actually this year the WRI went back to where we started at our first meeting, looking at gaps and controversies in research, but in a much more refined way. Like how much do we really know about how women are infected with HIV? And how women can protect themselves, asking some very basic questions about what’s going on in a female body’s immune system. It was a fascinating meeting, and the group has a statement [with] a series of priorities around answering those questions. The goal of the WRI is more, better, faster research for women. And a lot of great things have come out of WRI. The validation that the GRACE study could be done and would work came out of the work of the WRI, as did the Women Living Positively Survey and some of the other things that you may be aware of.
JB: So what are some of the issues that are important to women with HIV that you feel need more research or study?
DAB: I think that there are a lot of issues that are really critically important. We are perpetually trying to understand better what happens, in relationship to pregnancy and fertility, in those women who choose to become biological mothers. It’s not just about whether the baby is going be infected with HIV, which we now know is way less likely to happen [especially when treated]. But we’re still struggling with how best to treat women during pregnancy and beyond, especially for women in the developing world. I think the microbicide issue is extraordinarily important, because it’s incredibly exciting, for both HIV-negative and positive women, and I think that there’s a lot of work still to be done on bringing the reproductive health community together to champion the microbicide research with those of us who’ve been working on women and HIV-related issues.
I think I have a lot of basic science questions that are about the inflammation process and what’s happening inside our bodies. I think that Bob Silicano’s talk at CROI [Conference on Retroviruses and Opportunistist Infections] this year was fascinating and the possibility that we don’t know everything we think we know is very real. We need to understand how to dose women appropriately; we need to understand how women process these drugs so that we know how to manage the toxicities and side effects over the long term. There are a number of things for me that kind of stand out as big questions.
JB: Why do you think that women have traditionally been underrepresented in clinical trials? What can be done to include more women in trials and why is that so important?
DAB: Women have been underrepresented in clinical trials for a very long time, and not just in HIV, for a whole host of reasons. The biggest reason has been, of course, their ability to bear children, and the risk that if they become pregnant on an experimental therapy that they are going to cause significant damage to a fetus or even lose the baby. The FDA really came from the response to what happened when women were treated with thalidomide during pregnancy and we ended up with 10,000 or more thalidomide babies. The government said we’ve got to have a better grip on these things. Fortunately, there’s been significant progress made over the years, and increasingly, women are actively recruited to participate in clinical trials. There’s still a number of challenges—the sites where clinical trials are done are typically sites where many women are not being cared for, I’m speaking about HIV specifically now. The studies are not always designed with women’s issues or special circumstances in mind—how the studies are run, what questions are asked, or how the sites are prepared to manage the unique needs of women who are primary caretakers, and that type of thing. For years we’ve listed transportation and child care as the primary barriers for women to clinical research, and I would say that, although child care and transportation are critical issues that should be addressed, they are not the primary drivers in preventing women from participating in clinical research.
It’s important because we need to understand how these drugs work in women, and how this disease impacts women, specifically. I think it’s great news when we can actually power a study well enough to be able to say, look, we’ve had enough women in the study to actually tell you that there’s not a difference between men and women in terms of this aspect of this treatment. But there are a number of cases where, over time, as we’ve had more women on treatment, we’ve had unique issues, needs and circumstances that have arisen because we’ve finally had the drug in enough women. The obvious case is the differential prescribing structure for nevirapine [Viramune] for women versus men, and some of the side effects and toxicities that occur. Basically, we need women in clinical trials so that we can answer those questions and so we can know that when my doctor prescribes a drug for me, we know how it’s going to behave in my body.
JB: So what are some of the challenges in designing trials for women, including the recruitment and retention? Could you talk in particular about the GRACE and SPRING studies?
DAB: There are some significant challenges in designing trials for women, and I think GRACE has shown us that retention is also a challenge. How do we make it possible for women to participate over the long term in a study, and what are the things that threaten their ability to participate successfully? There are some great lessons that came out of the GRACE study, and for me, that makes it a huge success.
From a protocol level, in the design of a clinical trial, you have to think about the questions you truly need answered. It’s really hard trying to figure out what information needs to be collected, anticipating what information you wish you had three years down the road. But we also have to consider what people are willing to do. How many visits do you really need? Do you have sites that have evening hours and flexible schedules? Are treatments provided free of cost or do people have to pay for things, going through insurance to get them, just as they would if they had to go to their doctor’s office? So what is their incentive to participate in the trial, other than to increase your hassle factor, despite the fact that you’re trying to be altruistic. Then, of course, site selection is a very, very big issue. There are a lot of wonderful people out there who care passionately about women’s issues, but whose sites just frankly are not positioned to enroll women effectively, just because women won’t go there, or feel like they don’t understand or trust the research that is happening. There are a lot of myths in the community about clinical research overall, so the site selection is an essential piece to how we roll out clinical trials effectively.
And then from there, what are you doing to provide support so the site understands how to meet the unique needs of the people, not just patients, who come through their door? A whole lot of what worked in GRACE was just about the sense of being a part of something bigger than yourself, being really valued, appreciated, and respected in an environment where, frankly, a lot of people are dealing with shame and stigma. Nothing that we’ve done in GRACE was rocket science, it was just a lot of basic, commonsense shifting around and thinking about things a little bit differently, that yielded a great result, which was successfully enrolling so many women and specifically women of color.
In fairness, you can’t really compare the challenges with SPRING to GRACE, because they’re radically different studies, different patient populations. SPRING was more specifically for more advanced populations, it was run in eight countries, it was a very different deal than GRACE, but I think there are a few things that could have been different for SPRING. One was that we didn’t effectively communicate what the study was for, and why we were doing it, to the patient community or to people out in the mainstream. That makes it really hard, when you go to www.clinicaltrials.gov to sort out between the dozens and dozens of other studies that are out there. You need some way to identify a study so it surfaces, for the patient, the investigator, and the staff at the research site. Because they’re probably doing dozens of studies, and they need a study that’s kind of, “top of mind,” if you will. The branding around GRACE really seemed to work—it was easy to remember, it was colorful, and pretty. SPRING didn’t have any of that going for it. I think, frankly, that SPRING, on a conceptual level, was a fascinating study about using therapeutic drug monitoring [TDM] to do some individualization of care, a real step forward.
JB: So what can women do to become more involved, as advocates for their own health care or for others?
DAB: Well, lots of things. One of the things that keeps women from jumping into advocacy is that the term “advocacy” is a little daunting. I have to remind people that even though advocacy seems like something that only the fringe element might do, if you’ve ever been at the grocery store and the pickles were on sale for $1.25 and they charged you $2.50 for them, and you said, “Hey, wait a minute, that’s the wrong price,” you’ve been an advocate—we use advocacy in all aspects of our lives. The first thing that women need to know is that advocacy begins with speaking up for yourself, and for people that you care about. You’re an advocate when you ask somebody to explain something you didn’t understand. You’re an advocate when you ask somebody to work around a conflict so you can make something work. You’re advocating for yourself and for your own healthcare when you get that clarity and peace of mind. When you stand up for yourself “Basically, we need women in clinical trials so we can know that when my doctor prescribes a drug for me, we know how it’s going to behave in my body.”and you figure out that you do have a voice, and it’s an important voice, there are all kinds of opportunities to get engaged. WORLD [Women Organized to Respond to Life Threatening Diseases], based out in Oakland, has been willing to parent the development of a new group called The Positive Women’s Network, and PWN is a coalition of HIV-positive women. I am a part of PWN, and many other women and organizations around the country are a part of PWN. It’s an exciting opportunity for positive women to find a place where they can, in a collective sisterhood with other positive women, find their voice, and figure out how they’re going to help themselves, their friends, or somebody on the local level, or for those who’re ready, to take the next step and do stuff on a regional or even national level. I find that incredibly exciting, because when I started in this, there wasn’t anything like that. There was a lot of desperation and a huge amount of need, and that certainly motivated many of us to find our ways into offices and rooms where we may not have been invited, to put in our two cents, to ask questions and get answers. It has paved the way for some real opportunities to have advocates at the table, leading the discussions, something that I think, in terms of other disease categories, people are trying to emulate. And it’s pretty exciting to be part of that.
JB: What would be the first and foremost thing you would want to tell a woman who has just been diagnosed with HIV?
DAB: You know, for the thousand times I’ve been asked that question, I wish I had that answer that I loved, and could spit out beautifully. The thing that automatically comes out of my mouth, and it comes out of many of the mouths of women I know is, “You’re not alone.” There is an enormous sisterhood of women living with HIV, though, unfortunately, we are still largely invisible, especially to the mainstream. But there are all kinds of advances in our understanding of HIV, and people are living well, they’re living healthy, and they’re living out their dreams, whether that’s crazy, silly dreams like hiking Appalachian trails, or realistic “real people” dreams like having a family. And as devastating a blow as an HIV diagnosis can be, it is also your key, I believe, to staying well and taking care of yourself in a way that you may never have thought about doing before.
JB: Anything else you’d like to tell us?
DAB: No, except that I just feel incredibly grateful and privileged to do the work that I do. There are not many people in the world who feel they’re doing what they’re supposed to be doing, and I’m really thankful to have that.
Visit www.thewellproject.org.
