Kyle Rybczyk is the clinic coordinator for the Vanderbilt HIV Vaccine Program, a unit of the HIV Vaccine Trials Network, or HVTN. Headquartered at Fred Hutch, HVTN is the world’s largest international collaboration focused on developing vaccines to prevent HIV/AIDS. It takes a global village to run a clinical trial like the AMP HIV Prevention Study underway now. Here is one villager’s story.
I became a nurse in 1984. Early on, I had taken care of some patients with HIV, before there was even a test for it. I was the one who volunteered to take care of the patients with HIV because no one else would go in the rooms. I know it sounds kind of hokey, but I really did go into nursing to help people.
Other people would say, “I have kids, I don’t want to go into that room.” I was young and single, and I honestly thought, “If this is the end of me, then I would have died doing something good for somebody.” And that was OK by me. Somebody had to take care of these people. If not me, who?
[When I started at the Vanderbilt HIV Vaccine Program in 1992], I thought I would really miss patient care. But it’s a whole other side of care. I learned very quickly that people would come into a research study and after a visit or two, I would build trust with them and they would share things with me that they weren’t sharing with their doctors. This was a niche for me to be helpful. It may not even have to do with the research. It was just a safe place for people.
There was a lot of [HIV] stigma in the early ‘90s. There still is now, but there was so much more back then. Effective treatments weren’t available. People were dying. That all affected me profoundly — personally and professionally.
My job as clinic coordinator is to do the big picture stuff — I’m responsible for regulatory and financial processing — and to be the manager and the boss. I do a little of everything; I’m part social worker, part clinician and part researcher.
We’re not just about getting the next person enrolled in a study. They’re not numbers, they’re people. They’re people who have needs and who are nice enough to come in and volunteer for a research study. We help them find doctors and providers for PrEP [a daily drug that can protect against HIV infection] and look at their foot ulcers, diagnose their chronic illnesses and help them get into community health centers.
I hire people who care about other people. When we ask [our study participants], “What do you like most?” They say, “The staff, the staff, the staff.” We give them birthday cards. We give them little treats at Christmas and Easter.
Is it for retention purposes? Sure. But it’s mainly because we think they’re really, really awesome for coming here and volunteering to be in studies. It’s a relationship for us. Enrolling people in studies cannot be about just meeting our numbers. I need our mission to drive the metrics, not our metrics to drive the mission.
I remember being told when I interviewed for the job, “This won’t be a long-time gig, because we’ll have a vaccine in five years.”
Here we are 25 years later. I was 28 when I started. I’ll be 53 in a few months. What started as, “We’ll have a vaccine on the market soon, and I’ll have been part of that effort” began to look like, “Oh my goodness, I’ll retire and die before there’s ever a vaccine on the market.”
We hope all the time that we work ourselves out of a job. We’ve been close several times. But somewhere along the way, I decided that having a vaccine on the market can’t be my carrot or I may be eternally frustrated. My reward has to be what I do every day. That perspective has been liberating and more fulfilling for me.
The AMP HIV Prevention Study [underway now] is the most exciting thing that I can remember in a really, really long time as far as scientifically, that it may make a difference. I will be elated when we have something. But that’s not what keeps me coming to work every day. And if a vaccine never happens, I will never regret being involved in this work.
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