Sharing Hope Through Research

January 23, 2014

Kay Kays is a 20-year pancreatic cancer survivor and a research advocate at the Alliance for Clinical Trials in Oncology. She received a Conquer Cancer Foundation Patient Advocate Scholarship to attend the 2014 Gastrointestinal (GI) Cancers Symposium, January 16-18, 2014, in San Francisco, California. This program allows patient advocates to further educate themselves on important advances in their areas of interest and share what they learned to make a difference in the lives of people affected by cancer.

As a GI research patient advocate with a special interest in pancreatic cancer, I concentrate on bridging the gap between research and patients through education classes, support groups, and peer-support patient phone calls for many national cancer organizations. My GI patient advocacy has also led me to become a national and international consumer advocate and grant reviewer. I take both of these commitments to representing patients and research very seriously and was honored and privileged to experience this meeting, thanks to a patient advocate scholarship. The scientific presentations, the education sessions, the exhibits, the posters, and the networking are priceless to an advocate to help bridge the gap between patients and research.

During the meeting, I was honored to meet Yoshiyuki Majima, who is the Chairman of the Pancreatic Cancer Action Network in Tokyo, Japan and an early-stage pancreatic survivor himself. We were introduced by another pancreatic cancer advocate, and the hope of cancer survivorship provided an immediate ice breaker. He shared with me that meeting a 20-year survivor made his trip worthwhile. We promised to keep in touch and share thoughts about how to work together as comrades in this fight against pancreatic cancer.

I was also privileged to be interviewed by Pawel Walewski, a journalist for the Science & Health section of the POLITYKA weekly magazine in Poland. Sharing conversations with both of these gentlemen concerning patients in their countries was interesting and enlightening. Foreign cancer patients are not as involved in their health care as here in the United States. Their access to prescription drugs, such as the digestive enzymes needed pancreatic cancer patients, was controlled by the government to the point of no benefit to the patients. One enzyme of low strength was allowed per meal, but just recently this limit was lifted and seven per meal are allowed today. Sharing quality-of-life issues, education, and hope between patients is always a two-way street. Patient advocacy is slowly but certainly educating to help make the journey and choices better for cancer patients outside the United States.         

I plan to disseminate the wealth of information I have learnt with the many national and local committees I participate in and to all cancer patients that need support with the hope that research provides.


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