For 30 Years, a Steady Force Behind HIV Clinical Trials
As Susan Pedersen approaches 30 years of HIV research, the heart of her work isn’t the headline‑grabbing breakthrough. It is the steady, methodical work that makes those breakthroughs possible. She entered the field in the 1990s, and from there, her role evolved into the backbone of clinical research: quality assurance and coordination. She helped build and refine the systems that keep the Institute’s complex, multi‑site trials on track—first at the Chapel Hill Clinical Research Site and later across a network stretching from Greensboro to Malawi, South Africa, Zambia, and Vietnam. In her leadership role today, she’s focused on strengthening quality systems, supporting sites across the global network, and ensuring that trials run smoothly, efficiently, and with participants always at the center.
Q: How did you find your way into HIV research?
A: My first job was working on HIV vaccine research in Seattle with a group that was the precursor to the modern day HVTN, in what was then called an HIV Vaccine Evaluation Unit. But I knew that I wanted a more front-facing role, and I saw the role that nurses played in research. That took me to nursing school in Wisconsin. When my husband’s graduate studies brought us to North Carolina, I sought out the HIV research people here. I knew that’s what I wanted to do.
Q: What were those early days of HIV clinical trials like at Chapel Hill?
A: I joined at a time when the Chapel Hill CRS was seeing some of the sickest patients in the region. Working with Dr. David Wohl, I enrolled people whose immune systems were almost completely depleted. To qualify for these studies, a participant’s CD4 cell count had to be less than 10. We’d almost never see anybody with such a compromised immune system anymore. And enrollment was intense. Today, we may work for a month and we enroll one person. Back then, we would enroll five or ten people in a couple of days.
Those years, the late 1990s, coincided with the arrival of protease inhibitors. Participants who were enrolling on those studies were so sick. They started taking these medicines and their entire clinical outlook changed in a matter of months or years. Many patients who might once have been told their time was measured in months are still alive today.
Q: In those early years, your workspaces were often improvised and constantly shifting. What do you remember most about that period?
A: I started in an abandoned lab on the fifth floor of Burnett Womack. I went on vacation, and when I came back, my office was no longer in the lab. When Burnett Womack was renovated, we relocated to a former church on Cameron Avenue, just down from the Carolina Inn. We rented the entire church. We all had very ornate stained-glass windows in our offices, and the baptism bay was where we stored our data. And the work itself never stopped. Staff routinely packed up charts and walked—rain or shine—from the church to the hospital and CTRC to see participants. It was normal for us.
Q: How did your work evolve as treatments improved?
A: After the first wave of life‑saving regimens, I began enrolling participants in comparative studies—not just asking whether a single drug worked, but which combinations were most effective. Do you want to take a dozen pills a day, or swallow chalky, unpleasant ones that practically dissolve in your mouth? Those regimens, many built around protease inhibitors, were considered the cutting edge at the time. Now, we’re down to a single pill a day—or it doesn’t even have to be a pill a day; it can be an injection every few months.
It boggles the imagination that I could have been working on an HIV vaccine in 1993, before the internet came out, and today we’re still working on an HIV vaccine. That’s how complicated HIV is. At the same time, we’ve seen extraordinary progress.
Working closely with colleagues in Malawi, South Africa, Zambia and Vietnam, has given us a broader understanding of the world—and those global insights continually shape and strengthen the care we deliver locally.
Q: What is your role in the HIV Cure Center’s clinical work?
A: Once the Chapel Hill CRS was running smoothly, we started to rethink how the HIV Cure Center’s clinical program was structured. Rather than having a single, full‑time clinical manager who does everything from soup to nuts, I proposed a more distributed model, drawing on pieces of the expertise we have here. The result is a collaborative approach to cure‑related clinical studies that match the current scale of the portfolio, while still drawing on in‑house expertise.
Q: Why have you’ve stayed in this work so long?
A: One of my former participants from an ACTG 384 trial in the early 2000s came up to a colleague at Wake County Public Health and asked him to say hello to me and Dr. Wohl. When I first enrolled this participant, his prognosis was uncertain. Now he’s enjoying his life. Seeing someone you met at their sickest now with a normal life is a powerful reminder of why we keep showing up, visit after visit, protocol after protocol. That quiet, everyday normalcy, made possible by what once felt like experimental regimens, is exactly the outcome we all hope for.
The Institute for Global Health & Infectious Diseases (IGHID) attracts people who are driven to make big change. From principal investigators and grant managers to regulatory specialists and study coordinators, everyone has an important role to play in what we do around the world. We are pleased to highlight the work of the people who proudly serve IGHID.