More Than a Career: Lung Cancer Advocate Turns Passion Into Action

Lung Cancer Heroes®, CURE® Lung Cancer Heroes® 2021 Essay Book, Volume 2,

Advocacy Groups | <b>Lungevity</b>

Upal Basu Roy has a true gift of being able to think from his heart. He educates the patient community, helps patients navigate the fragmented system, fights for drug access issues in other countries, addresses disparities and supports patient-driven initiatives in research and advocacy.

I nominate Upal Basu Roy for the CURE® Lung Cancer Heroes® award. Upal is the senior director of LUNGevity Research at the LUNGevity Foundation. He spearheads LUNGevity’s Translational Science Research Program and its Patient-Focused Research Center. In these roles, Upal oversees LUNGevity’s research awards program. This includes monitoring and evaluating the research projects as well as implementing and managing LUNGevity’s patient-focused research, including Project Transform, a multiyear, multistakeholder patient preference study that LUNGevity is conducting with The Ohio State University School of Medicine.

Upal also guides the scientific program for LUNGevity’s International Lung Cancer Survivorship Conference, translates research into patient-friendly resources and communicates the collective voice of the community to industry and government to ensure that the patient is at the center of all research. He has a passion for action in addressing health disparities as a member of LUNGevity’s Health Equity Council, and he also tirelessly fights for those who don’t have a voice. Upal holds a Ph.D. in molecular and cellular biology from the University of Arizona and an M.P.H. in global health policy and management from New York University.

In addition to his brilliant mind, Upal has a true gift of being able to think from his heart. Upal always puts patients first when it comes to both research and support. A few examples: He educates the patient community, helps patients navigate the fragmented system, fights for drug access issues in other countries, addresses disparities and supports patient-driven initiatives in research and advocacy.

I have worked with Upal on patient-driven research between the EGFR Resisters patient advocacy group and LUNGevity Foundation. The EGFR Resisters would not have been able to make the impact that we have made in research or to present data at the International Association for the Study of Lung Cancer’s World Conference on Lung Cancer and North America Conference on Lung Cancer without his leadership and support. He is instrumental in fostering relationships and making sure that we (laypeople) are always prepared and understand the complex science. I also can say with certainty that I would not be the advocate I am today without Upal’s unwavering and unconditional guidance and encouragement.

Beyond his profession, Upal acts on his passion and sympathy to raise awareness for lung cancer. Whether it’s 6 a.m. or 9 p.m., Upal is always willing and ready to help patients and other advocates in a way that seems effortless. He makes people feel like the outside world stops existing for as long as we need. He has helped me with countless slides for presentations and with writing articles, and he also is always there to listen while I practice or just listen when I need an ear.

Upal’s generosity with his time, his skills and his heart extend to the whole lung cancer community. Despite watching the disease destroy, debilitate and take the lives of his own loved ones and people he has grown to love and care about, he still — off the clock — fights with us and for us. To be able to maintain this dedication through so much devastation is true compassion that cannot be learned.

I have been a lung cancer advocate for 20 years, and Upal is the most collaborative person I have ever worked with and the humblest. He never asks for recognition (always making sure people know that his efforts are collaborative), and he has never received the recognition that he deserves — which is why I am nominating him.

It is the only way that I, and others in the community, know how to show our gratitude and thank him.

Upal is a true leader in the field both as a professional and as a model of humane, compassionate care. The work he does on and off the clock has helped transform the landscape of lung cancer research and advocacy. His efforts in lung cancer research may save many lives, but more importantly, his genuine care and dedication to patients and our families has, and will continue to, change lives. His genuine care and dedication are the epitome of hope, a vital emotion for anyone hit by the cruelty of lung cancer.

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