Authors
Jean-Louis Pujol, Upal Basu Roy, Jill Feldman, Caleb Egwuenu
Published in
Journal of thoracic oncology : official publication of the International Association for the Study of Lung Cancer. Volume 21. Issue 8. Pages 103892.
Abstract
In the past, people with lung cancer received less public recognition and fewer organized support systems, compared with other cancer communities (such as pediatric or breast cancer). In the 1990s, limited benefit from systemic therapies discouraged support networks and advocacy. However, in the past two decades, transformative advances in targeted therapies, immunotherapy, molecular diagnostics, screening programs, and surgical and radiotherapy techniques have dramatically changed the patient experience. Advocacy organizations have played a crucial role in ensuring that these scientific gains translate into meaningful, equitable, patient-centered care. This article highlights lung cancer patient advocacy as an essential driver of progress in access to prevention, screening, treatment, and supportive care. Advocates have challenged stigma, underfunding, and neglect. Over time, organizations have expanded, professionalized, and formed national and international coalitions, amplifying their collective voice and coordinating policy efforts across countries. Beginning in the late 1990s, early organizations laid the groundwork for private research funding and public awareness. The 2010s marked a turning point, with social media enabling widespread patient connection, biomarker-driven communities emerging, and deepening collaboration between advocates and researchers. Today, advocacy groups serve as essential partners across the research continuum, shaping study concepts, reviewing protocols, co-designing patient-facing materials, and enhancing the dissemination of results. For example, across Europe, many lung patient advocacy organizations have been initiated by patients and their families, often starting as grassroots or online communities, or social networks, and later expanding into national or European networks. Examples include Lung Cancer Europe, ALK Positive Europe, and Women Against Lung Cancer in Europe, illustrating a decentralized yet strongly patient-led advocacy model. Advocates have also influenced public policy and societal perceptions. Their efforts have strengthened tobacco control measures and advanced anti-stigma work that centers dignity, respect, and person-first language. Despite meaningful progress, stigma continues to impede access to care and participation in research. Advocacy organizations work to change public perception because people with lung cancer deserve the same care and respect as people with other forms of cancer. Globally, advocacy in low- and middle-income countries is still developing but is increasingly recognized as vital. A major milestone was the first Pan-African Lung Cancer Conference in Accra in 2025, where advocates prioritized early detection, caregiver support, policy reform, and community education, while acknowledging the need for long-term infrastructure development. As lung cancer care becomes more complex, patient advocacy remains indispensable in promoting equitable access, harmonizing policy across regions, accelerating innovation, and expanding survivorship support. To sustain progress, advocates should be formally embedded in trial design, clinical guideline development, implementation of research projects, and dissemination of research findings and support the health care ecosystem so innovations in research and care are accessible, timely, and equitable. The field is entering an "Impact Era," where success is measured not only by survival but by how well people live. Advocacy will continue to drive systems toward more patient-centered and equitable lung cancer care locally, nationally, and globally.
PMID:
42552032
Bibliographic data and abstract were imported from PubMed on 05 Aug 2026.
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