When advocates unite, they can move a nation to act.
When my father received a diagnosis of pancreatic cancer in 1999 at the age of 52, he was given few options for treatment and was told to go home and get his affairs in order. He died four months later. I was angry that I had nowhere to turn for answers and that nothing was actively being done to change patient outcomes. I wanted the opportunity to speak out against this devastating disease. Since then, a pancreatic cancer advocacy movement has gained steady momentum and is helping to transform the pancreatic cancer community.
The Pancreatic Cancer Action Network is playing an important role in this movement by bringing people together—individuals like me who have been personally touched by pancreatic cancer—and giving us a voice. Just more than a decade ago, there was no coordinated pancreatic cancer scientific community. There was just a handful of dedicated scientists working in the field. Today, more scientists are studying pancreatic cancer and building the foundation of knowledge necessary to improve patient outcomes. The field is reaching a tipping point, and now, more than ever, we have to continue to invest in the foundation that has been built. This investment must include both federal and private research dollars, and it must ensure that patients are aware of cutting-edge science, including clinical trials that will help advance treatment options for the disease.
Our personal stories made a difference and, when spoken together, had strength, power and purpose.
I will never forget the day six years ago when I met with U.S. Rep. Anna Eshoo of California in her Washington, D.C., office to discuss the lack of research efforts dedicated to pancreatic cancer. She was extremely enthusiastic about doing something to put a greater focus on the disease. But what I remember most was her wise advice: “We can’t do this alone,” she said. She reinforced that, in order to make a difference, we had to activate advocates from across the country to create a sense of urgency about pancreatic cancer and tell our personal stories.
And that is exactly what we set out to do. This army of patients, families and friends from across the country were emboldened by the challenge they faced. They wrote to their members of Congress, traveled to Washington, D.C., and went above and beyond in hopes of making a difference in honor of loved ones, for themselves and for future generations. Like Randy Pausch, the Carnegie Mellon professor and author of The Last Lecture, who testified before Congress just months before he died from pancreatic cancer. Like Lisa Niemi, who traveled to Capitol Hill several times in honor of her late husband, Patrick Swayze. Like Jill Ward, an active 54-year-old mother of three, who was told that she had tried the last treatment option available to her, but still met with her congressional representatives because she knew it would help those who came after her.
Our voices were heard by Congress, and a significant milestone was achieved in January 2013 when President Barack Obama signed the Recalcitrant Cancer Research Act, formerly known as the Pancreatic Cancer Research and Education Act, into law. The bill’s passage was a true testament to the passion and dedication of the patients, families and volunteers who wouldn’t take no for an answer.
Our personal stories made a difference and, when spoken together, had strength, power and purpose. But our work is far from over. Progress requires the continued dedication of passionate advocates, volunteers and supporters. I am lucky to work with these courageous individuals in honor and in memory of the heroes in their lives.
Julie Fleshman is the President and CEO of the Pancreatic Cancer Action Network.