Peter F. Garrett to people with cancer: Your story has power

This Pride Month, Peter F. Garrett appeared on The Cancer Letter Podcast to talk about what his experience during the HIV/Aids crisis has taught him about effective healthcare communication and advocacy.Garrett spoke with Paul Goldberg, editor and publisher of The Cancer Letter, and Jacquelyn Cobb, associate editor. In the 1980s, Garrett was a closeted gay man in his twenties. He met his now-husband, Ken, who was open, and through him was introduced to a network of people who were openly gay. They became Garrett’s “instant-friends.”“All of a sudden I knew all these great people,” Garrett said on this week’s episode of In the Headlines. “But they then were also dying.”That time period was characterized by an “overwhelming sense of fear and constant anxiety,” Garrett said.“It was so mysterious at first. Nobody knew what was going on. They didn't know if it was an infectious thing, if it was a cancer related to poppers, or some sort of environmental thing,” Garrett said. “So, it was just this very scary feeling that you never knew what a phone call was going to be. Phone calls—I remember being kind of terrifying, (these would've been landline phones, obviously) because it just seemed like bad news was coming in, and so forget about doctor's appointments… Right now, everybody's getting hay fever and allergies. That terrified you. If you had a sore throat, colds, anything with a fever, you just assumed you had HIV/AIDS.”This experience was formative for Garrett, who later became the director of External Affairs at NCI. Garrett has since founded Patient Action for Cancer Research, an advocacy organization that aims to organize and amplify patient voices in an effort to protect life-saving health research.“It was really, really scary. I found myself at the epicenter of something that was happening very quickly to a certain population but was really being talked about broadly, and that very much framed the way I think about disease in general,” Garrett said. “This is really about a pandemic, a disease like cancer that, unlike cancer, which has been around forever, was all of a sudden there, but like cancer in many ways, it had a stigma. And I think that stigma associated with disease is something that is part of what you have to think about when you're talking with patients about what they've experienced in their cancer journey.”Garrett had a message for people with cancer: Stories have power.“It's about people coming to the table and realizing that their story, should they decide to tell it, has a lot of power,” Garrett said. “Whether they tell it to their neighbor or their church community or their local reporter or The New York Times or whomever or a member of Congress, I think it's all powerful. Because it just reminds us that this is not just about science. Science is cool, but this is about being healthier.”Stories mentioned in this podcast include:Proposed OMB rule aims at the heart of the US research enterprise—and scientists are fighting backHouse bill gives NCI $7.4 billion in FY 2027—$110 million above current budget As his Senate testimony alleged danger from mRNA COVID vaccine, El-Deiry had an offer to run NCI Frederick labLessons from the AIDS Quilt: what the cancer world can learn from AIDS advocacy Former NCI official's nonprofit seeks to tell the stories of cancer patients A transcript of this podcast is available: https://cancerletter.com/podcastc/20260617-petergarrett/