Awards of Courage
Melanie A. Thompson, M.D.
Honoring with Pride 2001 Honoree
Dr. Melanie Thompson is founder and principal investigator of the AIDS Research Consortium of Atlanta (ARCA), which brings together primary care physicians and people with HIV/AIDS in the clinical research process. ARCA was an original member of the community-based research network funded by the National Institutes of Health, as well as amfAR’s own community-based clinical research network. Dr. Thompson has served as principal investigator on over 125 clinical trials involving over 1,200 patients, and is actively involved in efforts to establish antiretroviral therapy guidelines. She also provides primary care for a large HIV patient population through her private practice. Dr. Thompson received amfAR’s "Award of Courage" at the Foundation’s Honoring with Pride 2001 benefit in New York and was interviewed following the event. Portions of that interview are excerpted below.
How did you first get started in AIDS clinical research?
Well, I got started in clinical research basically because I was taking care of people with HIV and AIDS, and at that time in Atlanta we really didn’t have clinical research readily available for people, and we also didn’t have treatments other than AZT. So there was a great need for new treatments. People were beginning to use alternative treatments, like dextransulfate, AL721, that really had never been tested, but were being used out of desperation. So we wanted to create something that would actually test some of these treatments; we wanted to create a mechanism for doing clinical research and bringing new therapies to our patients, but also trying to understand whether the therapies really offered them benefits. So, there were at that time about 14 or 15 private doctors in Atlanta who were seeing people with HIV. And there two large medical clinics, The Grady Hospital Infectious Disease Clinic and the Veteran’s Administration Clinic. Together with the leaders of those clinics we created an infrastructure for AIDS research in Atlanta.
Was there one specific incident or patient or finding that solidified for you that this was the field you wanted to dedicate yourself to?
I think when I was in training in medical school, I was very touched by a young woman who came to the emergency room. I happened to be on rotation through the emergency room at a large hospital, and she was having trouble breathing. Someone had put her in the asthma room, and she was getting treatments for asthma, but she didn’t get better. So she got admitted to the hospital for asthma. It turned out that I actually picked that person up on my service when rotations changed, so I followed her for a couple of months. And naturally the story goes that she didn’t have asthma, she had Pneumocystis carinii pneumonia (PCP), and she had AIDS. She had all the tell-tale signs, but nobody had recognized it. I got to know her very well over the course of the month that she was in the hospital and really learned a lot about the isolation that people went through. She had only had two sexual contacts in her life. She came from a very religious family. She was a young black woman who had a good job and was devastated by this diagnosis. And she really didn’t know where to go; at that time there were really no social support networks in Atlanta, other than those for gay men. She didn’t feel comfortable with any social support that was offered. So she had no one to talk to, knew no one with this disease, and was afraid to come out to her family or friends. So I think I was really touched by her and her story. And I also felt very helpless because we had so little to offer her.
How would you say your medical experience prepared you for your work, or did it prepare you for your work, with HIV/AIDS?
I went to medical school a little later in my life. I was out of college for 7 or 8 years before I decided to go to medical school. So I kind of came to medicine as an older student. And I think that throughout my training in medicine I really was oriented toward public health and was interested in working with the public sector—people who were in need but didn’t have means. Oddly enough, I ended up in private practice, because I found a wonderful setting, with people I trusted and felt comfortable with. It was a good match for me, but I think I always maintained my public health orientation. And to me, clinical research is part, or should be part of public health—it’s a way of trying to rationally understand whether what we’re doing is helping people and learning how better to treat them. So I think I brought something of a public health mindset to both my private practice and to clinical research. I also felt that clinical research should be part of clinical care. There should be a direct relationship between the primary care people receive and the clinical research options they have. So when we created ARCA it really was a means of integrating clinical research into primary care through community-based research. And at that time, in 1988, that really was a very new concept.
ARCA (AIDS Research Consortium of Atlanta) is one of the first non-profit community-based HIV/AIDS research centers in the U.S. What was the main motivation for establishing the consortium?
Well, I think to offer something to patients in Atlanta that would increase their treatment options, and to try to have a way of making sense of all of the alternative treatment options that were out there, as well as some of the new drugs that were coming along. ARCA was the third community- based research center in the country, and I got a lot of help from Donald Abrams at the Community Consortium in San Francisco and from a variety of people at the Community Research Initiative in New York. So we took a little bit from the systems in New York and a little bit from the systems in San Francisco and tried to make something that worked in Atlanta.
You have tried to increase poorer communities’ access to treatment and clinical research information. What are some of the challenges you have encountered?
There are many challenges. In the African American community, there’s a strong legacy of Tuskegee and the terrible things that have happened in clinical research throughout the years. There is tremendous distrust of clinical research, and there is tremendous disconnect with the medical system in general—distrust of the medical establishment, all for good reason. It’s hard to build trust and break through those barriers so that people actually can take advantage of some of the options that are available to them. We started by being involved in support groups and trying to be involved with public clinics, where a number of people with HIV from indigenous communities were seen. Now ARCA has expanded its scope a bit to involve public clinics, public community health department clinics—Ryan White-funded clinics. And I think it is an ongoing struggle, and now more than ever we really need to turn our attention to the African American communities where AIDS is a true epidemic that is mostly unrecognized, and to the Hispanic/Latino communities where the issues are somewhat different. There are many taboos, many trust issues, and language barriers. And we need to turn our attention to women, who have special issues and often don’t recognize themselves as being at risk. ARCA has always been dedicated to providing our treatment research to people of all communities, without cost, to cover as much as we can. Certainly the research is never at cost, and the visits are never at cost. We also try to provide drugs for people as much as we can. So we actually end up providing a lot of the cost of clinical care in the context of research.
What are some of the misconceptions commonly held about HIV/AIDS and treatment?
Years ago there was a misconception in the African American community that AZT was poison to black people, that it was so toxic that it really offered no benefit and only made people sick. And this was the unfortunate result of some bad analyses that came out of a single clinical trial many years ago. But it was a perception that was difficult to shake. I think there is a great reluctance, particularly among women, but also in poorer communities, to take medications when there may be side effects that may interfere with the quality of life initially. I think we’ve learned a lot about the side effects of some of the drugs that we have, and all drugs have the potential for some side effects. But I think there’s often a misconception that the therapies are too hard to take, or are too toxic, or are going to harm them more than help them. So I think there’s a lot of education needed to help people understand that these therapies really can help extend their lives and improve their quality of life, even though there may be some side effects.
Has the mission of ARCA changed as the demographics of the epidemic have changed? If so, in what ways?
I think it is changing. In the beginning, the epidemic in Atlanta was predominately in gay men, predominantly gay white men. Although we’ve always had a proportion of African Americans and women and a small proportion of Hispanic/ Latino people in our clinical trials, we have not been so aware of the epidemic in other communities until really the past few years when it’s become much more obvious that not only is the epidemic ravaging other communities, there is a huge reluctance to being tested, and most people who are infected don’t even know it. And ARCA was very involved in treatment access that was really being driven by the gay community, offering new drugs and new possible treatment options to people. And I think that now that there are treatments available for people, our mission is shifting to be sure that we include all communities more broadly in clinical research, in offering treatment options for people. Our focus is shifting a bit more toward education, and getting into some aspects of prevention—encouraging people to be tested, doing counseling, and trying to understand how best to help people first of all just learn that they are infected.
Of what in your career are you most proud of?
I’m proud of many of the things that ARCA has been able to do. We’ve been involved in the licensing of almost all of the antiretrovirals that are now available. But what touches my heart is really the individual patients and the many patients over the years who have taken the time to come to me and told me that being in the study that ARCA offered had saved their lives or had changed their lives in some significant way. It really does make me feel that we’re fulfilling a mission because we’re touching the lives of so many individual patients, and we’ve literally sometimes helped to pull them from their deathbeds to be able to work again and experience life. The other day I was walking down the stairs lost in thought, and a patient stopped me and said, “Dr. Thompson, I just wanted to tell you for the first time in 13 years, I’m undetectable.” Basically he had been on a clinical trial, and had always failed on all of the medicines he’d been on before. And since we’ve had viral load testing—which hasn’t really been 13 years, it’s only been a few years—he had never had any viral loads that were even low, much less below the level of detection. He was just ecstatic and very grateful for the opportunity to be in a clinical trial.
What do you see as the most promising clinical research going on now in the field of HIV/AIDS?
I think there are several areas. We have to have new drugs. The antiretroviral drugs that we have now, that are licensed, are all very similar in some ways. We have an epidemic of drug resistance that’s growing among patients who are already on drugs, and we have an epidemic of drug resistance that’s just beginning among patients who are newly infected with viruses that are already drug resistant. So I think the frontier is to develop new drugs that have different resistance profiles in the classes that we already have, but also to develop new drugs directed against new targets that can be used in combination therapy. So drugs with new resistance profiles and using new targets is one area of research that is desperately needed. And among all the drugs that are being developed, we need to develop drugs that are easier to take and have minimal side effect profiles, and are inexpensive enough to be widely used. So I think improving on these aspects of the drugs we already have would be of great benefit. Adherence is a major problem, and adherence research is very important—trying to learn how to help patients take their drugs better. But having better drugs to take is also key to that. I think prevention research is going to be more and more important as we go along—trying to understand the barriers and stigmas associated with testing and getting people into care who don’t even know they’re infected. And then helping them to be successful in accessing care and taking their treatments. And certainly vaccine research is a primary, ongoing area that is pivotal.
What are some of the challenges that lie ahead?
Well, there are many scientific challenges. But I think the biggest challenge we face is the fight against apathy and prejudice, because we have been blessed to have some successes, but the big fight is still ahead of us. And we’re seeing new waves of infection among younger people, who are not fully aware of what HIV is or what it can do to them. We’re seeing new waves of infection among women who are infected heterosexually, because they don’t recognize that their partners are at risk, and because they’re not empowered to take control over their own safety. And we’re seeing a rightward shift in the political landscape that threatens to send us back into the ignorance of the early 1980s. So I think it is more important than ever to fight the perception that AIDS is under control, to fight the perception that if you get HIV, it’s okay, because we have treatments, to fight the perception that AIDS goes along with being gay or being an injection drug user. And it is important to advocate for the ability of people to have access to treatments that are affordable and safe. I really have great fears that funding in this country will go down because there is too much apathy, and infections will go up because there is both apathy and ignorance. And for the most part the power structure won’t care, because there’s prejudice. The people who are most affected by this epidemic now are not gay white men of affluence and power, but people who already don’t have a voice in this society.
As women are increasingly affected by HIV/AIDS here and abroad, do you think enough effort is being made to include women in clinical trials and to address their specific needs?
I think there could be more clinical trials specifically associated with issues pertaining to women. And I think we need to always be aware of the barriers that women face in terms of enrollment in clinical trials—and the psychological barriers they face in dealing with the disease, because I think it is different to be a woman with HIV from a lot of perspectives. Although we know they ultimately get pretty much the same disease with some nuances, I think the psychological barriers are so incredibly different. There is a lot of awareness of the need to make clinical trials available for women, but I think there’s a lot of trust- building and education that has to go on to actually make that work. And there’s a lot of support that needs to go on to help people remain enrolled in clinical trials over time, because women need a higher level of support for transportation, childcare, and sometimes psychological support, sometimes financial support. The women who are infected with HIV are more likely to be poorer and socio- economically disadvantaged.
Can you describe some of the current projects you are working on?
We’re very involved in research on new antiretrovirals— that’s always been a focus of ARCA’s interest. In the past year or so, we’ve begun early clinical trials with new nucleoside drugs, new non-nucleosides, and new protease inhibitors. The results have been mixed, some of those drugs have not made it. And I think we’re going through a period where we’re weeding out some of the drugs that aren’t going to make it to market. But I think there are some exciting drugs on the horizon. We also have been part of a large preventative HIV vaccine trial and have enrolled quite a large number of patients in that trial. And we have learned a lot about prevention and preventative vaccine trials and are eager to do more in that area. And we’re very excited about being more involved in the issues involving HIV in communities of color and among women in Atlanta—I think that will become a more important focus of our work.