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Global Forum | June 2016 JACK WHELAN: “Be a Participant With Your Care Team” In the below interview, patient advocate, research advocate, and legislative advocate Jack Whelan discusses patient advocacy with Marcia Horn, DIA Patient Engagement Community Co-Chair and Global Forum Co-Editor, Patients. MARCIA: You have appeared on the cover of AACR’s Cancer Today magazine, and keynoted major conferences in the US and Europe. You’re an advocate with ASCO and NIH’s National Clinical Trials Network (NCTN) Alliance and co-Chair of Research Advocacy at the Alliance for Clinical Research Excellence and Safety (ACRES). You’re also a devoted husband, dad, and grandad, a consulting Patient Opinion Leader, and have been battling Waldenstrom’s Macroglobulanemia for eight years. What drives you? JACK: I often joke what drives me is the dexamethasone steroids used in chemotherapy! I chose to get involved in 26 Vol 8 Issue 3 advocacy and event speaking as a way to learn as much as possible about my rare “not- yet-curable” blood cancer. Most of the organizations you mentioned, including DIA, have professional advocacy education programs. I’ve been determined to find the best care team, and explore the best treatment options, most of which have been clinical trials, as the historical outcome for my cancer is poor. MARCIA: You’ve been a mentor to many patient advocates. You’ve seen many advocates in action. What accounts for the better advocates? What makes advocates less effective? JACK: There are so many opportunities in patient, research, and legislative advocacy, and an urgent need for a variety of skills. Some of us speak for those who have not been heard by commercial and government insurance policymakers, and state and federal lawmakers and regulators. Some are effective educators, writers, bloggers, and social media experts. Those with business skills speak effectively with and for biopharmaceutical and life sciences industries. The most productive advocates avoid partisan politics, research the subject matter, and are passionate about improving the situation. Personally, I think “pediatric moms” are among the best advocates. Less effective are those individuals involved in advocacy because they have an ax to grind, but have no solutions. MARCIA: What would you tell Vice President Biden and Moonshot Executive Director Greg Simon to prioritize in their report to the President? JACK: As a career investment research analyst turned research advocate, I see incredible value in investing in biomedical research as a matter of public policy. Recently, Congress passed legislation restoring much-needed funding for the National Institutes of Health and National Cancer Institute. Equally important is to encourage investment from the private sector by way of an updated tax policy. US corporations pay the highest corporate tax rates in the world. I would encourage Vice President Biden and Greg Simon, whom he named to head the Moonshot Initiative, and who coincidentally is