Community outreach

What is your name and where are you from?

Abe Gaston III was a very sweet and gentle soul who lived in Seattle, WA until his untimely death on February 18, 2018.  

When were you involved with the ACTG, and what are some of the things you’ve done as a member?

He was involved with all 4 local HIV Research CABs in Seattle. He was a long-time member of the University of Washington ACTU CAB, serving as our GCAB representative from 2012 until his death in 2018, and he jumped onboard the defeatHIV CAB when it started in 2013.  Abe actively worked on the UW/Fred Hutch Center For AIDS Research (CFAR) Community Action Board, specifically as a member of that CAB’s HIV Stigma Working Group and Young Black MSM Working Group, both created in response to needs expressed by community members and ASO staff at a regional symposium.  He also served as a liaison to the CAB of the Seattle HIV Vaccine Trials Unit, attending many of their CAB meetings in an effort to bridge the false divide between prevention and treatment research that often siloed each CAB’s work.

The longer Abe stayed in his role as a GCAB representative for our site, the more he pushed himself to stand out and be willing to advocate publicly for clinical trials in HIV and Hep C treatment research.

Click here to see video of Abe’s involvement with our efforts to advertise the REPRIEVE trial, despite not being able to participate in the study due to a heart attack.

Abe’s willingness to share his personal story and his health struggles still inspires me.

Why are you involved in HIV or TB activism?

Abe first stepped forward as a leader on January 28, 2014, when he organized and arranged on his own the topic for our January 2014 CAB meeting. He arranged for Dr. Margaret Shuhart to speak with our CAB about hepatitis C and about the new direct-acting agents (DAAs). Attendance at this meeting was high. People were hungry for information about these new drugs. Many people living with HIV and Hepatitis C attended what was their first CAB meeting.

And the meeting was well-timed in terms of its topic, for we were about to open some of the ACTG’s Hepatitis C studies.

Abe was a former participant in one of the DAA trials Dr. Shuhart conducted, and at that CAB meeting, Abe bared his soul and spoke about his participation in that trial, including all the difficulties he experienced as a result of taking those medications. People were riveted to his story. Abe finished his tale, but left out one important point. Dr. Shuhart tried to hint to him that he left out the punchline. Abe was a little confused, until another CAB member, unable to stand the tension any longer, blurted out: “WERE YOU CURED?” Abe was a little embarrassed to have forgotten to tell this part and sheepishly mumbled, “Oh yeah… I was.”

And the room erupted in a thunder of cheers and applause.  

I think that moment truly changed Abe, helping him seem himself as an advocate for the first time. He learned that being himself and sharing his lived experiences was enough. The meeting was very successful and several people made contact for future appointments to learn about upcoming trials. 

Most important to Abe was that one of our more critical community members commended him on his talk. He told me this because that person does not do that very often, so he knew he did a good job. Abe felt good about that.

When I remember Abe, I remember this moment, and how he triumphed.

How you want your work in the ACTG to be remembered?

What is not easy to recall is the subtle role that Abe played in the way we relay research to the public in Seattle. I am struggling to put into words the influence this one man had on the ways in which community advisement is practiced in Seattle. Sometimes the work being done isn’t seen, because there is no public stance taken by an individual, or no words spoken powerfully at a meeting. Sometimes community advocacy in HIV research takes place in private, face-to-face, between people. I want each of us to remember this when we remember Abe.

I have been looking for pics of Abe to share with you, trying to find a stand-alone image of just him. And in all the pictures I have of him, Abe is never in the forefront, never alone. This speaks to the kind of person he was, not too proud, not wanting the spotlight, but always a member of the group, always together with other people, always present and ready to help. In the pictures I found, you can always find Abe—for he’s always there, usually hiding beneath a baseball cap.

No one can do everything, but each of us can do something. The people I am privileged to meet and work with in this living experiment we call CAB continuously remind me of this truth. And no one better embodied this lesson than Abe Gaston III–a gentle, quiet man who attended nearly every public HIV research meeting and event we have hosted over the years.

Submitted by Michael Louella, Community Engagement Project Manager / defeatHIV Outreach Coordinator / UW ACTU Community Liaison / UW Fred Hutch CFAR