Dan Gebhardt Turns a Diagnosis into a Career

Dan Gebhardt was living and working in Spain in 1990 when a trip to the hospital for recurring abscesses led to a life-changing diagnosis.

“A young doctor came in with my lab work and told me I had AIDS and would die,” Gebhardt recalls. “It was not one of the Catalan phrases I was hoping to master.”

His life changed course again six years later while on vacation with his partner back in Gebhardt’s native state of Ohio. His partner, who was also living with HIV, had become too sick to return to Spain.

“I flew back to Barcelona alone and packed up a few things and sold the rest,” Gebhardt says. “I sobbed the entire flight home. I thought I was moving back to the US to die.”

But death didn’t come, and instead, a new career blossomed. For the past 12 years Gebhardt has worked as a Data Manager with the AIDS Clinical Trials Group (ACTG) Network. He says it’s a professional path that he would not have followed had he not learned he was living with HIV.

“Life is full of surprises,”Gebhardt says. “With a degree in English, I never could have imagined I would be working in AIDS research. I am incredibly proud to be associated with the ACTG. I have met so many amazing people through the ACTG. With all the advances that have been made to date, it gives me great hope that a cure is just around the corner.”

Upon returning to Ohio, Gebhardt began treatment with Michael Lederman, MD, at Cleveland’s ACTG sites at University Hospitals and Case Western Reserve University’s AIDS Clinical Trials Unit. Luckily, Gebhardt responded well to treatment and never developed an opportunistic infection associated with HIV like tuberculosis (TB) or pneumocystis carinii pneumonia (PCP).

He enrolled in the first of many clinical trials including the ACTG’s A328 and the treatment extension of that study A5051. These studies explored adding an injection of Interleukin-2 (IL-2) to participants’ anti-HIV medication regimen since IL-2 had been shown to increase CD4 T-cell numbers. Receiving his care and volunteering for clinical trials at the ACTG’s University Hospitals Clinic site prompted a research nurse there to ask Gebhardt if he would be interested in applying for the site’s data coordinator position.

“After applying, I got cold feet and rescinded my application,” Gebhardt says. “Luckily the study coordinator convinced me I could do it and to take the position, which I did. Later I moved into the position of data manager for the Case Western Reserve and MetroHealth ACTG sites. In 2010, I moved into the role of data manager for the MetroHealth site only.”

He would like to put the stereotype of data managers spending all day keying information to rest. Although he does do a fair amount of data input, Gebhardt says ensuring the data collected at his site is accurate and timely are his priorities. He is also the staff representative to the ACTG’s Community Advisory Board (CAB) at the MetroHealth site. CAB members are usually people infected or affected by HIV who volunteer their time to provide the ACTG with feedback about its research agenda and assist site staff with getting the word out about enrolling studies locally.

“I encourage our patients to participate in the CAB and explain the importance of the community to voice opinions and concerns about studies,” Gebhardt says.

“Dan’s commitment to HIV research and his willingness to share his story allow him to allay fears in patients who may have some mistrust or concern about clinical trial participation,” says Barbara Gripshover, MD, an Investigator at the ACTG’s Case Western Reserve University site. “And Dan brings an important voice of the patient to our unit’s executive committee as we discuss trial selection, development and recruitment.”

He has recently expanded his position at the MetroHealth site and within the ACTG Network by taking on the role of field representative for an enrolling study. Field reps do not develop the studies, but they do give input to make the study run smoothly and help the protocol team with study implementation at the site level. For example, a field representative would read over the proposed summary of tasks to be completed during a participant’s study visit and give feedback as to whether or not this list is feasible.

“It’s been an amazing learning experience,” Gebhardt says. “I’ve met people from other ACTG sites and really connected with them. David Currin , the Protocol Development and Implementation Subcommittee Chair, has been an inspiration.”

Currin, RN, is a Research Nurse at the ACTG’s University of North Carolina site.

"I feel like I've known Dan for a lifetime,” says Currin. “Dan and I first met while serving on the ACTG’s Outreach, Recruitment and Retention subcommittee. We worked together in leadership roles, which prepared us both for more challenging committee work. As I moved to leading the Field Rep group, Dan moved on as a representative to the Data Management Center and Performance Evaluation Committee. We stay connected through the Site Management and Clinical Care Committee and Field Rep mentoring program. Seeing him at the ACTG Network meetings and leadership retreats always makes the work that much more rewarding. Dan is not only my colleague, he is a dear friend!”

Gebhardt comes to research with a unique perspective – that of someone who works in the field and lives with the condition being studied. Having lived through the worst of the epidemic in two countries and as a former clinical trial participant, he has a message for people recently diagnosed with HIV and those considering joining a study.

“First off, I would tell them that they are so lucky to have been diagnosed now and not in the early days of the epidemic,” he says. “Then I would tell them to get into care. Being HIV positive is not easy. Now we have the resources to stay healthy, so it is their job to do just that. For someone thinking about joining a clinical trial, I would tell them that if they are not interested in the extra support and increased monitoring that comes with a trial, then they should get involved for all the people who joined clinical trials in the early days to get us to where we are today. Most of those people never lived long enough to enjoy the advances that have been made. You owe it to them.”

Now in his 50s and with 50 percent of the HIV/AIDS population turning 50 or older by 2015, Gebhardt says he is grateful the ACTG’s research agenda includes studies investigating aging and HIV. He is also hopeful future studies will lead to a cure.

“I remind myself every day how lucky I’ve been and I really thank everyone within the ACTG for all of the work that has been done and is still to be done,” Gebhardt says. “The ACTG has helped so many people continue living, and live with an improved quality of life. In the grand scheme of things, I do not think there can be any possible higher accomplishment than to help others.”