Summary
Not long ago, lung cancer had almost no organized patient advocacy and nowhere near the visibility that breast cancer or pediatric cancer communities had built. A new article in the Journal of Thoracic Oncology, co-written by four advocates and researchers — including LCFA’s own Jill Feldman — traces how that changed over the past two decades, and what’s still unfinished.
Not long ago, lung cancer had almost no organized patient advocacy and nowhere near the visibility that breast cancer or pediatric cancer communities had built. A new article in the Journal of Thoracic Oncology, co-written by four advocates and researchers — including LCFA’s own Jill Feldman — traces how that changed over the past two decades, and what’s still unfinished.
The authors break the last 20 years into six distinct periods. It started with the “Fearless Era” (2001–2004), when the first dedicated lung cancer organization got off the ground with just $1.7 million in private funding. From there came a “Speak Now” era where advocacy found its collective voice, a “Community” era powered by social media, and a “Reputation” era where online communities built around specific biomarkers started forming. When COVID hit, advocates moved everything online and became frontline educators. Today, the authors say we’re in a “Collaboration” era, where advocates aren’t just supporting patients — they’re genuine partners in designing the studies themselves.
That shift is the article’s central point: advocates now help shape research questions before a study even starts, review consent forms and protocols while it’s running, and help make sure findings actually reach the people who need them once it’s done. The authors point to real examples, including a project on what it’s actually like for patients to undergo required research biopsies, and a global trial that changed how a common drug side effect is managed based on patient input.
The article doesn’t stop at celebrating progress. It’s honest about what’s still broken: access to biomarker testing and clinical trials remains deeply unequal, both across countries and within the same one. Advocacy in lower-income countries is only just beginning to build a foundation, marked by the first-ever Pan-African Lung Cancer Conference in 2025. And private research funding still matters as much as ever, especially as government funding tightens.
The authors call this next chapter the “Impact Era” — one where success won’t just be measured by how long people survive, but by how well they live.
