Creating a brighter future for those facing pancreatic cancer
In our role as the national leader in the fight against pancreatic cancer, the Pancreatic Cancer Action Network announced a bold initiative in February 2011 aimed at bettering the odds for everyone affected by the disease now and in the future known as The Vision of Progress: Double Pancreatic Cancer Survival by 2020.
|Survival rates for pancreatic cancer have remained in the single digits for more than 40 years. Today, the five-year relative survival rate remains at just 6 percent. We intend to double survival by the year 2020 by accelerating the application of our proven comprehensive approach to fighting the disease — combining research, providing support for individuals and families living with the disease, raising awareness, and building and sustaining federal support. Once we hit this benchmark, we will move even further ahead in increasing the overall survival rate for pancreatic cancer.|
Four metrics, or impact indicators, have been identified that will be assessed on an annual basis to track progress in fulfilling the 2020 goal. The chart below identifies each of these indicators.
“We want to demonstrate to our supporters through measurable outcomes that we are making progress toward increasing the survival rate for the disease,” said Julie Fleshman, Pancreatic Cancer Action Network President and CEO. “We can’t wait until 2020 to see if we have been successful; we need to track these outcomes regularly to ensure that we are moving forward in our efforts.”
In the following sections of this article, you will see bar graphs with statistics relating to four metrics for each of our key programs — Research, Government Affairs & Advocacy, Patient and Liaison Services (PALS) and Community Outreach — that all support the comprehensive strategy we use to fight the disease and that we believe can have a major influence on increasing the survival rate for pancreatic cancer in coming years. The metrics all identify definitive benchmarks that we will use to mark our progress.
“By employing our comprehensive and proven approach and focusing our efforts for maximum impact, we are confident that we will make real headway in increasing understanding of and treatment for this devastating disease. We are leveraging our power as a leader in the field to transform the country’s system for pancreatic cancer healthcare delivery and medical research,” Julie added.
Scientific investigations to play pivotal role in furthering efforts to double survival
Our goal is to build a robust pancreatic cancer research community. The strategy for fulfilling this goal comprises three components: growing the number of scientists focused on studying pancreatic cancer, increasing private and public research dollars, and encouraging collaborations among researchers to facilitate innovation and expedite scientific and medical progress.
By acting as a community, the whole is greater than the sum of the parts and expertise in basic, translational and clinical research can be brought together to develop novel approaches to prevent, detect, treat, and cure pancreatic cancer. To assess the organization’s progress in accomplishing this goal, the total number of investigators awarded pancreatic cancer research grants from the U.S. National Institutes of Health, and from private organizations like ours focused on advancing pancreatic cancer research, will be tracked.
The number of U.S.-based researchers that received grants from the National Cancer Institute (NCI) of the National Institutes of Health (NIH) focused on pancreatic cancer between 1990 and 2012 is shown. There was a dramatic increase in the number of NCI-funded investigators studying pancreatic cancer in the past two decades, in particular during the last decade when the Pancreatic Cancer Action Network was founded and began advocacy efforts. However, the growth peaked in 2010, reflecting a lack of growth in the overall NCI and NIH budgets.
Shown is the number of investigators awarded grants of at least $1000 focused on pancreatic cancer in 2010 and 2011 from the NCI (bottom), and the number of any additional investigators awarded grants focused on pancreatic cancer from other institutes within the NIH (middle) and private organizations (top). If investigators have grants from more than one group, they are only counted in the lowest bar to avoid inflating the number of pancreatic cancer investigators. Note that the drop in the number of investigators awarded pancreatic cancer grants from the NCI between 2010 and 2011 was compensated at least partially by an increase in investigators funded by other organizations.
Government Affairs & Advocacy
Advocacy efforts work to intensify national focus on pancreatic cancer and increase federal research funding for the disease
We augment private research funding with aggressive advocacy for increased attention and federal dollars for pancreatic cancer. Thanks to the dedicated efforts of our volunteers nationwide, our efforts have helped to secure support from lawmakers for the Recalcitrant Cancer Research Act (formerly called the Pancreatic Cancer Research & Education Act) that will create a long-term plan, or scientific framework, for pancreatic cancer. While we still face numerous hurdles, we are in a strong position to get the bill passed in 2012. And that is good news for making progress toward our goal of doubling the pancreatic cancer survival rate by 2020.
Although our efforts to increase survival through advocacy include passage of the bill, they do not end there. Not only is the legislation itself important; the visibility and overall noise about pancreatic cancer that we have created through the process of educating lawmakers is significant as well. We have made it very clear that the pancreatic cancer community has strength, power and purpose. In addition, we continue to fight for more federal funding for the National Cancer Institute so that they will have more money to spend on pancreatic cancer research. We also monitor and provide comments to the various federal agencies on any policies that impact pancreatic cancer patients, such as issues related to drug shortages, regulations on drug approvals, access to clinical trials, and more.
Patient and Liaison Services (PALS)
Increasing pancreatic cancer clinical trial enrollment key to furthering treatment advances
Extraordinary scientific advances have been made in the last few decades in the fight against pancreatic cancer. Translating these breakthroughs into clinical progress that will alter outcomes for those diagnosed is largely dependent upon building a critical mass of patients and physicians willing to participate in clinical trials. Sadly, progress has been hindered by the fact that only 3% of adults with any form of cancer participate in such trials.
In contrast, experts estimate that more than 60% of children diagnosed with cancer are enrolled in clinical trials. Such participation has changed the outcomes for children’s cancers from being virtually incurable 40 years ago to having an overall 5-year survival rate of 83% today.
Studies have determined that both a lack of awareness and low prioritization of clinical trials by physicians and patients facing cancer contribute to the low enrollment rates. To bring attention to the need for clinical trials and to increase enrollment, the Pancreatic Cancer Action Network recommends that all patients consider clinical trials when exploring treatment options. Patient participation in trials is imperative to making true progress in fighting pancreatic cancer. Clinical trials are the only way researchers can find new, better treatment options for the disease.
One of the Pancreatic Cancer Action Network’s primary goals that will help to realize the Vision of Progress is to double the survival rate of pancreatic cancer by the year 2020 is to increase the number of patients participating in pancreatic cancer clinical trials.
To measure the impact of our efforts, we began tracking the number of pancreatic cancer patients participating in trials in the United States with our own metric. In 2011, with 97% of data collection complete, 1,794* pancreatic cancer patients were reported as participating in clinical trials throughout the U.S. This number represents roughly 4.5% of pancreatic cancer patients, which is encouraging compared to the national 3% trial participation average for all adult cancers. (*Please note that the 1,794 pancreatic cancer patients cited were enrolled in phase I, II or III pancreatic cancer-specific clinical trials. The figure does not include patients who enrolled in phase I solid tumor studies.)
Going hand-in-hand with increasing the number of patients participating in clinical trials is ensuring that an adequate number of good clinical trials are available to test new approaches for pancreatic cancer detection and therapy. To this end, we are also tracking the number of pancreatic cancer clinical trials that test novel chemotherapeutic agents that have not been previously approved to treat any type of cancer.
Based on online registration for all events excluding marathons and volunteer registrations.
Event participation drives progress
Major events such as PurpleStrides help raise valuable funds for the fight against pancreatic cancer. Equally important, the events increase awareness of the disease and the organization and educate the community about pancreatic cancer. By growing the number of event registrants every year also plays a significant role in moving closer to achieving the aims of the 2020 goal.
|With your support, we can meet our goal to double pancreatic cancer survival by 2020. A recent analysis by our organization revealed that pancreatic cancer is projected to move from the fourth to the second leading cause of cancer death in the U.S. by the year 2020, and possibly as early as 2015. We cannot let survival for pancreatic cancer continue to languish in the single digits any longer.|
Now, more than ever, we must work together to advance scientific research, ensure that federal dollars are in place to fund the most meritorious science, support patients and their families, and build awareness nationwide. Join the fight today.