THE BLOG

For the First Time: A Handbook for Fighting Lung Cancer

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What I wanted most when I founded the Addario Lung Cancer Foundation was to ensure lung cancer patients have access to information about their disease, and the tools and resources needed to beat it. Recently, I traveled to Vienna, Austria for the European Cancer Congress biannual event, where I spoke about the importance of this issue.

Access to information became a priority for me, because during the weeks following my initial diagnosis, one of the most shocking things I encountered was the glaring absence of information about lung cancer treatment options. Lung cancer is the No. 1 cancer killer worldwide annually, and that is due in part to the lack of understanding among both physicians and patients about the nature of the disease, often diagnosed only once the disease has very seriously progressed past the point of available treatment options. Patients are often left in the dark, unable to access the basic information and resources readily available to people with other types of cancers, and neither doctors nor patients are demanding the available testing options, because there is simply a lack of awareness. Informational materials can be extremely helpful for patients, however the stigma surrounding lung cancer has resulted in funding for educational campaigns discouraging smoking rather than for research and patient education. The stigma surrounding lung cancer as only a smoker's eventuality has dramatically hindered funding for research and made support services for victims scarce, leaving them isolated in their fight against this deadly disease. A void I decided I would make it my life's mission to fill.

At ALCF, we have made it our mission to do everything we can to lessen the daily burden lung cancer patients face and provide the resources they need to take control of their lives, now with lung cancer. Our goal is to ensure that not only are resources available, but also that every patient is able to access them -- regardless of cost or language. Lung cancer is a global disease that can affect anyone, regardless of age, race, or background.

In the absence of a multilingual, comprehensive resources for educating patients about lung cancer prompted us to publish our patient handbook "Navigating Lung Cancer, 360 Degrees of Hope." This handbook is available both on Amazon in e-book and in print, and is published in English, Spanish and Chinese, with additional languages in development. The patient handbook provides a roadmap for navigating the disease -- from general information to recommended specialists, testing opportunities, clinical trials and support services available.

Every patient should have access to the best care possible, and at ALCF we are working to make lung cancer a chronically managed disease by 2023. At the World Lung Cancer Conference last month, we addressed the needs of young lung cancer patients through our presentation of the Genomics of Young Lung Cancer Study's early findings, and the response was overwhelmingly positive. At ALCF, we are determined to make patients' needs a priority in the global lung cancer community, and I look forward to continuing our groundbreaking efforts beyond Vienna.