Together, We Can Do More – All Over the World
When I first got involved in lung cancer advocacy 18 years ago, it was in its infancy, especially compared to other cancers. We still have a long way to go, but the landscape of lung cancer advocacy is flourishing in the U.S., and the patient voice and involvement have played an integral role in its success.
Why I enjoy attending lung cancer conferences
In September, I attended the International Association of the Study of Lung Cancer (IASLC) conference. It is the world's largest meeting dedicated to lung cancer, attracting more than 7,000 researchers, physicians, and specialists from more than 100 countries. Last month, I had the privilege of attending the European Society of Medical Oncology (ESMO) conference in Munich, Germany. ESMO is the equivalent of ASCO, which is the American Society of Clinical Oncology, in Europe where 28,000 clinicians, researchers, and advocates from 138 countries gather to learn about the latest discoveries in therapies for all cancers.
Ivy Elkins, my friend and fellow advocate, and I attended these meetings as patient advocates and as co-founders of the EGFR Resisters, a patient-driven group focusing on accelerating research to make EGFR positive lung cancer a manageable chronic disease. For us, the meetings were so much more than hearing about the latest advancements in research (although they are exciting!). They were an opportunity for us to connect with researchers, clinicians, and industry partners. They also allowed us the chance to meet other advocates from all over the world. I was surprised and dismayed by what I learned from these advocates.
Lung cancer is a global issue
Despite the past decade’s progress, which has been brimming with major breakthroughs in lung cancer and greater awareness, there are still vast differences that exist around the world. In the U.S., patient advocates and advocacy organizations are making great progress, but, unfortunately, in most other countries, lung cancer advocacy is still in its infancy.
In the U.S. patient advocates are living longer and better lives and able and willing to storm the Hill, raise awareness, educate the public, and provoke change. We have increased funding for U.S. lung cancer research and have made it very clear that lung cancer is no longer the invisible disease! Yet other countries are where we were when I first got involved in advocacy 18 years - the dark ages!
It’s even harder to believe that at these (international) conferences, research data is presented from studies that are promising, life-changing, and possibly life-saving, but they are only accessible and approved in ‘some countries.’ Lung cancer is a global issue. It’s not enough to gather this great data and present it if it will only translate into clinical benefit for patients who live in a country or area where they have access to, and can afford, cutting-edge care. Research is only as good as the patients who benefit from it!
There is something seriously wrong when people are dying just because they aren’t lucky enough to live in a country like the U.S.
It's time to think globally about lung cancer awareness
Patient advocacy is what improves access to treatment, raises awareness and ensures that patient preferences and viewpoints are integrated into planning and policy. Trying to raise awareness, funding and respect for a disease that had been shadowed by a stigma of shame and blame sometimes seemed unattainable when I got involved with advocacy through LUNGevity Foundation 18 years ago. We didn’t have a lung cancer community or connections to major donors. But, our dedication, determination, passion and tireless efforts to raise awareness, raise critical funds for research, and create a community is what made the grassroots efforts in those early years so successful. I only want others to see that the impossible is possible!
The wheel is already invented, in motion and gaining speed. There are many advocacy groups in the U.S., and each one is doing incredible work. But, IASLC is the only global organization dedicated to the study of lung cancer; a common platform, a common agenda, where together we can help others around the world create change, change that will prolong and better patients’ lives.
Individually we can make a difference, but together we can do more, be more, impact more, and help advocates all over the world!
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?