Unlocking KRAS: The Power of Advocacy

Every so often, there is a breakthrough in cancer research that changes what people believe is possible. For pancreatic cancer, that moment is now.

The recent news about a new oral therapy, daraxonrasib, doubling overall survival in a clinical trial for patients with previously treated metastatic pancreatic cancer, is the most significant advance we have ever seen in pancreatic cancer. For the vast majority of patients whose tumors are driven by KRAS mutations, it has the potential to redefine the standard of care offering more time with loved ones, the possibility of a better quality of life and renewed hope for the future.

But breakthroughs like this don't happen because of one discovery or one clinical trial. They are the culmination of decades of scientific investment and persistent grassroots advocacy - thousands of people refusing to give up hope for their loved ones who have been impacted by this deadly disease and doing something powerful to fight back by raising their voices and telling their stories.

"This turning point in pancreatic cancer reflects the power of grassroots advocacy and what is possible when patients, researchers, clinicians, advocates, industry and government work together toward a common goal," said PanCAN President and CEO Julie Fleshman, JD, MBA. "For more than two decades, PanCAN has built a thriving community that has been instrumental in leading and laying the groundwork for moments like this."

This is the story of how our advocates helped get us to this tipping point.

1999: Building a Movement

When PanCAN was founded in 1999, the landscape looked very different. There was no national organization solely dedicated to pancreatic cancer. Public awareness was low. The federal investment in pancreatic cancer research lagged far behind the need - the National Cancer Institute invested just $17 million in pancreatic cancer research nationwide and funded less than 30 investigators. The five-year survival rate was just 4%.

From the beginning PanCAN understood that changing outcomes would require attacking the disease from every angle including providing direct patient support and resources, funding research and early career scientists to build the field and advocating for more federal research funding for the disease because supporting individual scientists would not be enough on its own.

PanCAN began by creating a Patient Call Center to help those impacted by the disease and their families navigate their diagnosis. To spur growth in the scientific field where there was such little investment and so few studying pancreatic cancer, PanCAN created a competitive peer-reviewed grants program focusing on funding early career investigators to build the field. Slowly, PanCAN began to establish a nationwide network of passionate volunteers - people who lost loved ones to the disease, their families and friends, and survivors - to spread more awareness and help fundraise for the disease. Knowing that the federal government was the largest funder of cancer research in the United States, yet pancreatic cancer received only a small fraction of the funding despite being one of the deadliest cancers, PanCAN then turned its attention to Capitol Hill to demand that pancreatic cancer become a national priority.

2007: Advocacy Changes Science

Early on PanCAN understood the power of advocacy and became the uniting force for the pancreatic cancer community to bring their stories directly to Capitol Hill. But unlike many other diseases, pancreatic cancer had relatively few survivors to advocate for increased research funding. Most patients simply did not live long enough. The movement would have to be powered by families, caregivers, researchers and the small but determined community of survivors who believed future patients deserved better.

In 2007, PanCAN hosted the first National Pancreatic Cancer Advocacy Day in Washington, D.C., when 160 participants from across the country met with their members of Congress. PanCAN became a growing and recognizable force on Capitol Hill as volunteer advocates began to meet regularly with their members of Congress in Washington, D.C., and in their congressional districts taking action year-round to ensure legislative priorities were heard on Capitol Hill. Thanks to this passionate community, in 2008, the Pancreatic Cancer Research and Education Act, which would become the Recalcitrant Cancer Research Act, was introduced by Representatives Anna Eshoo (D-CA), and Ginny Brown-Waite (R-FL) and Senator Sheldon Whitehouse (D-RI).

"Working with PanCAN advocates across the country, we passed the Recalcitrant Cancer Research Act to increase federal research funding for a cancer that was almost always a death sentence," said Senator Whitehouse. "On behalf of all families touched by pancreatic cancer, I am very happy to say that patients facing this diagnosis today can have more hope thanks to research launched by our bill. It's a federal research success story."

One of the movement's most powerful advocates was Randy Pausch, PhD. In 2007, millions of people watched The Last Lecture in which the Carnegie Mellon professor reflected on life after being diagnosed with pancreatic cancer. A father of young children, his message of resilience and purpose resonated around the world, but he was determined to leave more than inspiration as his legacy. In March 2008 his pancreatic cancer had spread to his liver and spleen. Despite his illness, he insisted that his doctors get him healthy enough to travel to Capitol Hill so he could testify before the U.S. Senate in support of increased pancreatic cancer research funding on behalf of PanCAN. He believed that greater investment in science could change the future for patients who would come after him. He died just four months later.

"We don't have advocates for this disease because they don't live long enough," said Pausch at the hearing. His testimony became a defining moment for the pancreatic cancer community, demonstrating the urgency of investing in research that could save future patients. That momentum, together with years of advocacy led by PanCAN and its bipartisan congressional champions, including Rep. Leonard Lance (R-NJ) who joined as co-sponsor after Rep. Ginny Brown-Waite retired in 2011, paved the way for the passage of the Recalcitrant Cancer Research Act in 2013, five years after it was introduced due to PanCAN advocates' relentless determination. The law directed the National Cancer Institute to develop scientific frameworks, similar to strategic plans for the nation's deadliest cancers starting with pancreatic cancer, creating a spotlight on the disease and a new level of strategic direction and guidance to make progress against pancreatic cancer.

2013: The Long Road to Drug an "Undruggable" Target

One of the most important outcomes of that legislation was the National Cancer Institute's RAS Initiative, launched in 2013. For decades, KRAS had been considered "undruggable." Researchers understood its central role in pancreatic cancer but lacked the tools to effectively target it. Rather than allowing scientists to work in isolation, the RAS Initiative created a collaborative framework that enabled researchers to share discoveries, technologies and expertise across institutions.

That effort contributed to today's rapidly expanding pipeline of RAS-targeted therapies. More than 75 RAS inhibitors are now in development, many benefiting from tools and scientific knowledge generated through the RAS Initiative. This is exactly how scientific progress is supposed to work: basic research fuels discovery, federal investment enables collaboration, industry develops therapies, and patient advocacy organizations like PanCAN, with its small but mighty army of passionate volunteers and advocates, help ensure that promising science reaches patients faster.

2019: From Investment to Patient Impact

PanCAN's advocates have helped increase the National Cancer Institute's annual funding for pancreatic cancer research more than twelve-fold from $17M in 1999 to over $220M today. In 2011, their efforts secured the inclusion of pancreatic cancer in the Department of Defense's Peer Reviewed Cancer Research Program. And in 2019, Congress created the first-ever federally funded program specifically for pancreatic cancer research at the Department of Defense for $6 million.

"We (Congress) came together and organized 100 colleagues in the House so we could request for the first time that pancreatic cancer receive dedicated funding. It's called 'line-item funding.' It's specific to study pancreatic cancer at the Department of Defense. This is you - the power of all of you. If we didn't have you, the PanCAN advocates, the line item wouldn't be there. It is a testament to your powerful advocacy," said Representative Anna Eshoo (D-CA) delivering send-off remarks to the 650 people who came to Washington, D.C. in 2019 to participate in PanCAN's National Advocacy Day

Today, advocates have helped increase that program to $20 million. Each year, PanCAN rallies this growing and powerful community to advocate for more sustained and increased funding for the disease and we've been successful - consistently increasing the overall budget for the agencies and programs that fund pancreatic cancer

That sustained investment is not just an abstract policy achievement. It has translated directly into new discoveries, clinical trials and treatments that are changing patients' lives. For the first time in decades, patients with pancreatic cancer are experiencing the impact of this research not as a promise for the future, but as a reality today. Treatments like daraxonrasib are giving people something that has been far too rare in pancreatic cancer: more time. More time to celebrate birthdays and anniversaries. More time to watch children and grandchildren grow. More ordinary moments with the people they love that once seemed out of reach.

2026: The Work Continues

Daraxonrasib is not the finish line. It is proof that long-term federal investment in science works. It represents the beginning of the next era of treatment options for patients. The lessons learned from this breakthrough are already fueling future therapies and even greater advances lie ahead.

More than 25 years ago, PanCAN recognized that changing the future of pancreatic cancer would require a comprehensive approach: supporting patients, investing in research, mobilizing volunteers and advocates and securing sustained federal investment in science. Today, we are seeing the return on that investment. This is an extraordinary moment for pancreatic cancer.

"These advances are the result of decades of scientific research made possible by increased federal and private investment in the disease, and the power of advocacy," said Julie Fleshman. "I am deeply grateful to our entire community and the role that everyone has played to get us to this moment and I look forward to what lies ahead as we leverage this new breakthrough to accelerate progress for patients."

We are entering a new era of treatment options for pancreatic cancer patients, but there is still more work to be done to improve outcomes. It will take continued federal and private funding to make survival the expectation and not the exception. And it reminds us that every breakthrough begins years before the headlines - with researchers pursuing difficult questions, advocates refusing to give up, policymakers choosing to invest in science and a community united by the belief that patients deserve better.

This isn't the end of the story. It's the beginning of a new chapter. The breakthroughs of tomorrow will be determined by the commitment we make to accelerate progress today.

Read part one of our Unlocking KRAS series, Turning Science into Survival. Learn more about how PanCAN's Community for Progress helped get us to this tipping point.