It is hard to imagine Atlanta without the AIDS Research Consortium of Atlanta (ARCA)—but after 32 years, the beloved organization is closing its doors.
Since its opening in 1988, ARCA conducted over 400 research studies and contributed to the U.S. approval of 45 drugs for the treatment of HIV, two for HIV prevention, and 80 for the treatment of HIV-related complications or hepatitis C. It conducted the first-ever trial of HIV pre-exposure prophylaxis (PrEP) with the Centers for Disease Control and Prevention and is also credited with introducing rapid HIV testing to Atlanta while working to destigmatize testing, particularly among Black same-gender-loving men and Black women.
Our correspondent Terri Wilder recently spoke with Melanie Thompson, M.D., ARCA’s principal investigator, about the decision to close and the importance of this iconic Southern organization in the history of lifesaving AIDS research.
Thompson has thus far dedicated over three decades to ending the HIV pandemic and providing medical care for tens of thousands of people living with HIV in Atlanta communities; for her, the organization’s closure is “bittersweet,” but its time has come due to the changing landscape of HIV research.
This transcript was edited for clarity.
ARCA Was Born in the Darkest Era of HIV Treatment Development
Terri Wilder: Thanks so much for speaking with me today. Can you tell me when ARCA was started and who was involved in the beginning?
Melanie Thompson: ARCA started because there was a heartbreaking need for new drugs to treat HIV. Back in 1987, the only option we had was AZT [zidovudine, Retrovir], and AZT, as many people may remember, was quite toxic and only transiently beneficial. So, about a dozen doctors met to talk about what we could do. We were joined by Jim O’Rourke, who was a man living with AIDS, who really helped us to crystallize our ideas about a community-based research organization.
At that time, there were so many alternative treatments that were being touted. People carried coolers of AL-721, which was an egg-white kind of mixture. They imported drugs from Mexico that really had no data to support them. People were absolutely desperate. We really thought that Atlanta needed an opportunity to really study treatments so that we could offer to people living with HIV something more than just a desperate attempt at treatment.
So, we built a research infrastructure that was innovative at the time. I still think it is innovative. We built a structure that allowed people with HIV to access research, regardless of where they got their primary care. They could have been at Grady, at the big clinic for people with HIV, the VA, or at more than a dozen private practices that were treating people with HIV. We wanted everyone to have equal access to studies because there were no opportunities to access research at that time.
We began our first study—on erythropoietin, or EPO, which is a growth factor that helps people with anemia, primarily anemia caused by AZT—in 1988. As we started to talk to people around the country and meet people in other cities, we learned about work being done at the NIH [National Institutes of Health]. I actually was invited to a small meeting with Anthony Fauci and others from NIAID [National Institute of Allergy and Infectious Diseases] in 1988, where we discussed the needs of the community. It was at that meeting that the inspiration occurred for the Community Programs for Clinical Research on AIDS, the CPCRA.
ARCA ultimately was selected through a competitive process to be one of 18 sites for the CPCRA. We also became one of 12 sites for amfAR’s Community-Based Clinical Trials Network. Then we later joined the NIH Acute Infection and Early Disease Research Network in collaboration with the University of Colorado.
We really filled a need at the time. I think when organizations become so instantly successful, it’s really because they’re answering a need, and that’s what ARCA did. We went on to do research studies that contributed to the FDA approval for 45 of the 50 drugs that are currently approved for treatment, for both of the HIV prevention drugs that are currently approved, and for a number of drugs that are available to treat the complications, and also hepatitis C. We did a number of HIV vaccine studies, notably with Dr. [Robert] Redfield and Dr. [Deborah] Birx, back in the mid-2000s. We also did the CDC’s first PrEP trial, before PrEP was really PrEP, and that in conjunction with the University of California at San Francisco.
Wilder: Do you remember the first clinical-trial participant to walk through the door at ARCA?
Thompson: Well, first of all, I have to say that ARCA was in a house on Virginia Avenue. It really didn’t look much like a research facility. We were lucky enough to be given a space in someone’s building that was a real-estate office.
We really began to get referrals from all of our physician members. I can’t say I remember the first patient, but I do remember so many patients coming in to be screened for our clinical trial and coming to their doctors’ offices to be screened. At that time, we conducted the research in doctors’ offices. Our model was that people did not leave their primary care site. We sent a nurse to primary care sites to see them for their study visits, to draw blood, and to deliver study drugs to them.
Early ARCA Research: The HIV Drugs That Didn’t Work, and the Ones That Did
Wilder: Were there any trials, maybe at the beginning, that you had great hopes for but didn’t end up helping people?
Thompson: One of the things that I’ve noticed as I have been working over the past months to get our files in order to close down and to archive studies is that we tend to remember the ones that worked and the ones that transformed people’s lives for the better. But there have been so many, many drugs along the way that just simply didn’t work. They either had toxicities or they just weren’t effective.
Some of those drugs were the non-nucleoside capravirine that was only very briefly in clinical trials. There was aplaviroc, which was one of the early CCR5 inhibitors from GlaxoSmithKline. There were a number of drugs that had possible immune mechanisms of action, none of which worked at the time. IL-2 was one of the drugs that really held high hopes, but [its effect on] immune system, specifically CD4 count, was found to be not helpful, and it was too toxic.
So, yes, there have been a lot of drugs over time that absolutely didn’t work or didn’t make it for a variety of reasons. But this is what clinical research is all about.
Wilder: Let’s talk about the memories of early clinical trials in protease inhibitors and what that did for people with HIV in the mid- to late 1990s. As a researcher, what was it like for you to see this class of drug from idea to actually being able to offer it to the community?
Thompson: It was a very exciting time. The very early studies of protease inhibitors indicated that they were extremely active, more active than the other drugs we had seen to date. When ARCA opened early studies with saquinavir, ritonavir, and indinavir, there was a stampede to join the studies. We actually had to have a lottery, because we had only a relatively small number of slots for patients and hundreds of people who were interested in being in the clinical trials. That was really a very exciting time.
At the same time, it was hard to only be able to serve a relatively small number of people who were so eager to be involved in clinical research. Then, as soon as those studies began to show efficacy, there were many more studies that rolled out, looking at protease inhibitors in combination with other drugs and looking at protease inhibitors in combination with each other. It really was the dawn of a new day for people living with HIV. They began to live instead of die of AIDS.
ARCA Brought HIV Research Access and Inclusivity to Atlanta Communities
Wilder: When you think about ARCA and the history of the organization in terms of bringing treatments to the community—particularly the local community of Atlanta—what has been its impact?
Thompson: The most important thing that we did in constructing ARCA was to be very, very inclusive, to be sure that our trials were accessible and that we were not competing against any practice. We worked with the doctors and care providers to be sure that we served them. And regardless of ability to pay, the people living with HIV could easily access our clinical trials, whether they were getting their care at Grady or in the VA, or whether they had commercial insurance and were going to a private doctor’s office.
The main thing that we did right in the beginning was to be truly community based, to work with all of the care providers in Atlanta, and to work with all of the community-based organizations in Atlanta. What we were offering was complementary to what other people were offering, and other community-based organizations were able to offer services to ARCA patients and also refer people to ARCA studies.
Wilder: One memory that I have of ARCA is the annual Uncork a Cure event, which is the benefit that ARCA held every year. What are your memories about this event, and why do you think it was so important to the community to come out for it every year?
Thompson: One reason people came to Uncork was that they had an awesome time. We put together an event that was entirely driven by volunteers. We had, first of all, a wine tasting—so that’s got to be fun. Our whole community came together. People volunteered and donated to make this an event that was really special.
We started out by getting a lot of terrific distributors. At first, we had finger food and snacks. But then it turned into an event where all of these high-end restaurants in Atlanta wanted to participate. They would have stations at the event and would bring out their finest creations. That made it even more exciting, and it continued to change, year after year.
Then we added a silent auction. We had terrific items donated by the community for the silent auction: sometimes pieces of art, sometimes vacations, sometimes original crafts, and sometimes dinners.
It was always a little bit new every year. And most importantly, we had a really terrific community group who ran the event and contributed and really made it possible for ARCA to reach deep into the community and be supported. It really was a terrific event, and I think it is something that many of us will always remember fondly.
Wilder: Did I see that you auctioned off a dinner with Ludacris?
Thompson: We did! We did! Ludacris was so supportive of us. He made a great video for our event, and we auctioned off dinner. That person actually had a fabulous dinner with Ludacris—he was so generous and giving of himself. It was really important, not only because of the money that it raised, but to have a high-profile entertainer who was willing to step up and say, “Hey, this HIV stuff is important. It’s nothing to be ashamed of. And we should all be out there supporting the fight against HIV”—particularly to have a leader in the African-American community step up given so much stigma and discrimination about HIV, sexual orientation, and gender identity. It was extraordinary that he came forward and wanted to do this for us.
Thompson: She did cut a rug on the dance floor! She danced with everybody. Jasmine was also so generous with her time and seemed to have a really, really great experience, and was so much fun to be with. People had just a terrific time being in her presence.
We’re really grateful to all of the folks along the way who have supported Uncork—the famous ones and the ones whose names you really wouldn’t know.
Why ARCA Is Closing Its Doors, and What Comes Next
Wilder: I was very sad to hear that ARCA was closing after all of these years. Can you share why ARCA is closing? Is this related to a broader shift happening in HIV funding or research? Is it because it’s in the South? Is it COVID related? Is it tied to the NIH’s recent announcement of restructuring of its clinical trials network?
Thompson: Closing ARCA certainly is bittersweet. Just as ARCA appeared, because it was needed and it was time, I think ARCA is going away because it’s not the right time and place for ARCA anymore. There are multiple reasons that led to this decision. The landscape for HIV research has indeed changed, largely as a result of our successes. There are fewer companies pursuing treatment and prevention for HIV. There are fewer trials. There are fewer drugs in the pipeline, although there are some very significant, very promising drugs in the research pipeline at this time.
One message that is really important is that ARCA is not closing because research is no longer important. Research is still very important. It is what has driven these revolutionary successes we have had in the field of HIV. But, although ARCA has been a mission-driven organization, it’s also a small business. And to be a very narrowly focused business that is primarily about HIV means that we have to cover our overhead.
We don’t have a large institution that is paying our electric bill or providing insurance for our staff or providing us with a facility. Having a research staff is a very expensive proposition because you have clinical staff. We had a full-time pharmacist. We had data specialists, research associates, and administrative staff. We had our own laboratory and our laboratory director who managed that. There’s a substantial staff needed to do clinical research. And to fund that staff in an ongoing way, as well as the facility cost, you need to have a certain volume of studies, and a certain volume of patients on studies. What we saw over the last couple of years is that it was becoming harder and harder to maintain that.
We also saw that the studies that we had—there were about eight or nine studies—were all coming to a close around the same time. During the same time, the [COVID-19] pandemic was really beginning to affect us. So, new studies didn’t open, and some studies were halted in the middle or took a hiatus in the middle. Although we were already heading down the path of thinking that ARCA should close, COVID made it happen faster.
We were able to bring our studies to a natural end. And we served all of our study participants to the very last visit and fulfilled all of our obligations to sponsors. I’m very glad that we were able to end on a high note, and I think that’s what we did.
Wilder: What will happen to the experts that worked there? Are folks retiring? Or going on to other opportunities?
Thompson: We have three staff people who have been there for over 20 years. And because we have been working on this for a while, people have made their own choices in terms of what to do next. I think it’s been sad, particularly for those who have been there, to say goodbye to something that’s been a substantial part of their life for many, many years. But there’s now space for new opportunities. That’s how I look at it. I feel good about the work ARCA has done, and I’m excited to look ahead and think about the ways that I can contribute to ending the epidemic, perhaps differently.
Wilder: Earlier, you mentioned that you were going through files and looking to archive them. When you say archive them, are any of the materials going to an institution or a library, where folks can continue to learn about ARCA and its history?
Thompson: I hope that will happen with some of the documents. Those discussions are really just beginning. We have a regulatory obligation to archive certain study files with the sponsor. Just because a study is over doesn’t mean that there’s no responsibility for safekeeping of the study documents.
Sponsors differ in terms of how long they want to keep these documents. Some sponsors want to keep them for decades, and other sponsors only for a couple of years after the drug is approved or withdrawn. We have juggled hundreds and hundreds of boxes of study documents and have found homes for them with the sponsors that want to maintain them. Storing documents is a very expensive proposition, and we have thousands of boxes of study documents that have been stored over a long period of time. We are just finding the appropriate disposition for all of them.
Wilder: Is there anything else that you’d like to share about ARCA and the work there?
Thompson: Yes, and it is one of the reasons that it is time for ARCA to close. In the beginning, what we needed were drugs. We needed drugs that were capable of suppressing the virus so that people could develop a strong immune system, live a long and productive life.
We have those drugs now. But there will be drugs that are better, that have more benefits, that are long-acting. But one of the things that is driving our epidemic in Atlanta is really our inability to help people get tested, get into care, get on medications rapidly, and stay in care over a long period of time. This is daunting because of the broad social determinants that affect people’s ability to be in care: the lack of health care access due to lack of Medicaid expansion; the systemic racism that drives our lack of housing, lack of transportation, lack of access to health care; and the stigma that keeps people from even getting tested and therefore beginning the cascade of recovery and long life.
We realized that these are things we couldn’t offer. People could come for study visits, but we didn’t have social workers. We couldn’t offer housing or transportation or childcare, or food. It’s increasingly important that people living with HIV get established in their medical setting with a lot of support so that they can be successful in staying there, and that when they come in, they get offered treatment on the first day or in the first visit when they are seen. This is also not something that ARCA could do. Our successes as a freestanding HIV research clinic also were limiting in our ability to provide all of the needs for patients, in addition to access to newer drugs.
Wilder: When you think about all of the achievements of ARCA over these decades of work, what are you most proud of?
Thompson: There’s nothing that touches me more than when a person comes up to me on the street or at an event and says, “You probably don’t remember me, but I was on a study at ARCA, and that study is the reason I’m alive today.” There’s nothing you could do that would be more rewarding than that.