Lung cancer patients and advocates face wide-ranging challenges on a global scale. Because such challenges are felt worldwide, it requires a global advocacy effort from individuals who recognize that identifying even small ways to improve the quality of life of a patient with lung cancer can make a significant difference.
A global panel led by survivor and New York Times bestselling author Annabelle Gurwitch, convened to discuss ongoing patient advocacy initiatives during a session titled Breaking Barriers, Building Bridges: Advancing Patient Advocacy Worldwide on the final day of the 2024 World Conference on Lung Cancer.
Countering misconceptions about fundraising for research and addressing resource constraints were some challenges that Yvonne Diaz, co-founder and chair of Oncogene Cancer Research UK, encountered during the organization’s formation.
Despite early fundraising pushback, Diaz’s advocacy played a crucial role in establishing a tissue bank in the UK. The bank supports research aimed at developing treatments for resistance to various oncogene-driven lung cancers, including ALK and EGFR mutations.
“That’s truly exciting for us, and that project has opened the eyes of a lot of our patient populations, and other donors,” Diaz said. “Just thinking that we don’t need millions; even having some seed money can make a big difference.”
Advancing policy changes presents another challenge for patient advocacy groups. Lillian Leigh, a member of the IASLC’s Global Policy Committee and the Advisory Council of Cancer Australia, highlighted the crucial role of patient advocates in promoting evidence-based policies. She also emphasized the importance of sharing personal stories to raise awareness and encourage governments to take action.
“Policy change doesn’t happen overnight, unfortunately, and it’s really hard to measure the successes of advocacy,” Leigh said. “Ultimately, if we are patient and collaborate, I think patient advocates can make a huge difference in policy change.”
Shani Shilo, DMD, PhD, is the founder and CEO of the Israeli Lung Cancer Foundation, the only lung cancer organization in the country. Dr. Shilo discussed the organization’s initial goals, which included maintaining an up-to-date website and fostering a sense of community through a Facebook group.
Dr. Shilo also addressed the challenges encountered in promoting a national lung cancer screening program, including resistance and delays before the eventual approval of a pilot program.
“I know what happens when stage IV lung cancer hits a family, and I will do whatever is in my power so that it will not happen to others,” she said. “After many years, I took the Ministry of Health to the High Court. I think you need to be persistent, very persistent, and just continue to do this.”
Caleb Egwuenu, of Move Against Cancer Africa, illuminated the challenges faced by lung cancer patients in Nigeria, including the need to make repeated long-distance trips for treatment, which impacts their well-being. He discussed the efforts of his program to bring phlebotomists to these rural communities, aiming to improve access to care and reduce the stress experienced by patients.
“We noticed that patients visiting the cancer clinic at the hospital in Abuja often walk long distances to go to the lab to have their blood drawn. Once they draw the blood, they have to follow up on the test results,” Egwuenu said. “It is so stressful. The oncologists told us that most of the patients who arrive in good health and endure this stress have to be admitted.”
Another important takeaway from the session was the need to strengthen the relationship between patients, advocates, and healthcare professionals. Tim Monds, the founder of the Give a Breath 5K, shared his journey following his lung cancer diagnosis and how his “therapeutic” relationships with his physicians were crucial in expanding the event and raising awareness for patient support, advocacy, and research.
“Physicians not only guided my treatment but became crucial partners in advocacy. They used their expertise to inform and amplify our message, building connections and recognizing the unique skills that patients bring to the table. This has been essential in benefiting both physicians and patients alike,” Monds said.
Finally, Paul Wheatley-Price, MD, BSc, MBChB, former President of Lung Cancer Canada, Associate Professor of Medicine at the University of Ottawa, and a medical oncologist at the Ottawa Hospital Cancer Center, in Ottawa, Canada, shared his insights on the significance of advocacy and the advantages of collaborating with patients.
“If you work together in advocacy, you find that the patient-physician relationship means that I become a better person, a better advocate, and a better physician,” Prof. Wheatley-Price said. “And so I think it’s an opportunity for physicians to get involved.”
