A Look Inside ARA’s Institutional Review Board

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March 31 2014

Dr. Herminio Reyes with Carolyn CarlburgHerminio R. Reyes, M.S., Ph.D. is a longtime member of the AIDS Research Alliance Institutional Review Board. Dr. Reyes is also an academic associate and consultant to the biomedical, biopharmaceutical and clinical laboratory industries, as well as a patient advocate and educator.

Here, we talk with Dr. Reyes about how he came to volunteer for AIDS Research Alliance, what an Institutional Review Board does, and why he still gives back to ARA - almost two decades after his initial involvement.

How did you first discover AIDS Research Alliance?

I lived through the devastation wreaked by AIDS in the 1980s and early 1990s. My longtime partner was diagnosed with advanced AIDS and various opportunistic infections in 1989.

He was then a bartender at Rafters in West Hollywood and had no health insurance. I took him to the L.A. County Hospital, where Drs. Fred Sattler and Bisher Akil treated him. Both physicians were then on the Medical Advisory Board of Search Alliance, now AIDS Research Alliance. That was how I was first introduced to ARA.

What motivated you to join ARA’s Institutional Review Board (IRB)?

It began with my participation in a clinical trial at ARA.

After completing my postdoctoral work at UCLA on the molecular mechanisms and pathophysiology of disease in 1991, I joined Specialty Labs, which was then developing the higher sensitivity, lower copy number detection for viral load testing and various other tests related to HIV/AIDS that are now considered “standard of care.”

I was teaching these technological advances to doctors as part of my job when I decided I wanted to “put my body where my mouth is” – in essence, to “walk the talk.” I wanted to participate in a clinical trial to give something back to society.

In 1998, VaxGen, a spinoff from Genentech, initiated Phase III trials of a recombinant GP120 preventative HIV vaccine. I decided to submit myself as a volunteer for one of these studies, which lasted five years. Three years into the study, during one of my clinical visits to ARA, which was one of the U.S. trial sites for the study, Dr. Steve Brown, ARA’s Medical Director, asked me if I would like to join the IRB, and I joined in May 2001.

What is an Institutional Review Board?

An Institutional Review Board is a committee of people tasked with overseeing clinical trials at a site in order to ensure the protection of the rights and welfare of the human research volunteers. IRB review of consent documents also ensures that the institution has complied with applicable regulations.

Over the many years that you have sat on the IRB, was there a trial where you felt that you had particular impact—where you helped the trial succeed, or helped participants better understand their involvement?

The second preventative HIV vaccine trial for which I volunteered was the Merck 016 recombinant DNA vaccine trial. Merck sent over a draft of the Informed Consent document for IRB approval, but the IRB felt the document was somewhat less than participant-friendly, so we essentially rewrote it for approval by Merck prior to the initiation of the study.

Specifically, a step in the trial involved culturing cells using a protein from cow’s blood. Mad Cow Disease was big in the news at the time, and we were concerned that Merck had phrased the language in a way that exaggerated the associated risks to participants. We conducted some research and were able to change the language to show that the risk of contracting Mad Cow Disease from this study was less than the probability of being hit by a meteor. We added that language and it clarified for all potential participants how minor the risks were. I was the first person in the L.A. area to receive the first dose of this vaccine candidate and was dubbed “ARA’s Media Darling,” which was almost as amusing as it was gratifying.

How has being on the IRB impacted your life?

Being on the IRB has been a very rewarding and enriching experience.  Of all the volunteer activities that an individual can do, being an IRB member is, to me, among the most impactful. When a drug (or vaccine) is approved or disapproved for wide-spread use by regulatory entities, there are far-reaching benefits, both for individuals and for society as a whole.

ARA helped me out immensely when I needed it with my partner’s care back in the late 1980s, as well as with numerous other friends whom I have referred to ARA over the years. Ever since then, I have felt compelled to give back in whatever ways I can, including volunteering for clinical trials, being of service to ARA by my continued commitment to ARA’s IRB, indulging my amateur photography hobby by taking photos at many of ARA’s special events, and even dressing up in camp “Dorothy” drag at a sing-a-long screening of The Wizard of Oz at the Hollywood Bowl, where I paraded on-stage in front of ~19,000 people in order to plug supporting HIV/AIDS research.

We at AIDS Research Alliance salute all of the members—past and present—of the Institutional Review Board. Without these volunteers, we could not perform our clinical research.

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