In 1989, I stood in front of the AIDS Memorial Quilt on a hot summer afternoon on the National Mall in Washington DC.
I was 28 years old and living with the man who I have been with ever since. I was still finding my place in the gay community and, like many people visiting the Quilt, I was slowly walking around, admiring the photographs, names, and mementos that friends and family had sewn into their loved one’s panels. I can still feel the vibe—we were in the middle of a health crisis and many, if not most of us, were either silent or quietly crying in what felt like a sacred spot.
Then I came upon a panel that stopped me cold. His name was Ed. Memories came flooding back, we met sometime in 1984. He had bright red hair, played in a rock-and-roll band, and told irreverent jokes. When I was with him it felt okay to be gay. At a time when I was closeted and figuring out who I was, our relationship became part of my coming out story.
Ed was struggling with demons that soon began to overwhelm me. His addiction and other troubles scared me, and our relationship ended abruptly. Years later, there he was. Pictures and objects on his quilt panel told the story of his life. The music he loved. The people who loved him.
No one looking at that panel saw Eddie as a statistic. No one saw him as a victim. They saw a human being with a story. That moment taught me something that has shaped nearly four decades of work in health communications and advocacy. Facts inform, but emotion moves people.
The genius of the AIDS Quilt, and of much of the HIV/AIDS movement, was that it brought science, policy, and research into human stories. It reminded people that every life lost to AIDS was someone’s son, daughter, partner, sibling, colleague, or friend.
At the same time, researchers like Tony Fauci, Sam Broder, and Bob Yarchoan at the National Institutes of Health and academic medical centers across the country were building the scientific foundation that would eventually transform HIV from a near-certain death sentence into a manageable chronic disease for many patients.
The genius of the AIDS Quilt, and of much of the HIV/AIDS movement, was that it brought science, policy, and research into human stories. It reminded people that every life lost to AIDS was someone’s son, daughter, partner, sibling, colleague, or friend.
Both were necessary—science created the possibility of progress. The stories helped people understand why that progress mattered. The same lesson applies to cancer today.
Earlier this week, I attended a congressional briefing organized by the Parker Institute for Cancer Immunotherapy, or PICI, on cancer vaccines. There was a very interesting presentation explaining the impressive science, but what I really remember had nothing to do with research.
A woman told her story about being diagnosed with metastatic breast cancer while her children were still young. She recalled singing to them at night because she wanted them to remember her voice if she didn’t survive.
Then she told us she attended her daughter’s wedding.
Her story is what I took from the briefing. That is what cancer research looks like to the world. Not a chart. Not a survival curve. A wedding.
At the American Society of Clinical Oncology annual meeting this year, one of the most talked-about breakthroughs was a new pancreatic cancer treatment that nearly doubled survival for patients with advanced disease. The science made the breakthrough possible. The human story made people care.
Most people will never read a scientific paper. They will never understand the details of cancer vaccines, immunotherapy, or targeted therapies. But they understand what it means to be terrified.
The world of cancer science is extraordinary with brilliant researchers, innovative companies, world-class cancer centers, and an extensive clinical trial enterprise. But I believe its greatest untapped assets may be the millions of people whose lives have been touched by cancer. Their stories help people connect the dots. They help people understand that today’s treatments did not appear overnight.
And—importantly—they are the result of decades of work by researchers, clinicians, patients participating in clinical trials, and sustained federal investment.
That last point matters. Industry develops and brings most of the new therapies to patients. But those therapies almost always have their origins in federally funded laboratories and academic institutions. Publicly supported research often takes on the long-term, high-risk scientific questions that industry cannot or will not pursue on its own.
Without that foundation, there is nothing to translate into tomorrow’s breakthrough.
If we want Americans to understand what is possible through cancer research, we should start with the people whose lives have been changed by it. The AIDS Quilt taught the country that every life lost to HIV/AIDS was more than a statistic.
The most meaningful outcome of cancer research is not a number on a chart. It’s giving human beings longer, healthier lives.
Their stories remind us not only what is possible today, but how we got here in the first place.
The most important outcome from cancer research is not a statistic.
It’s singing to your child, and, years later, being there for her wedding.
Peter F. Garrett is founder and executive director of Patient Action for Cancer Research (PACR), which works to elevate patient voices and strengthen public understanding of the impact of federally funded cancer research. Beginning his career in the HIV/AIDS movement, he has spent more than three decades helping drive improvements in health and health policy through communications and patient advocacy, including as director of external affairs at the National Cancer Institute.
