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FasterCures Innovator Spotlight: Pancreatic Cancer Action Network

June 22, 2015
   
   


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What are the challenges in pancreatic cancer research that the Pancreatic Cancer Action Network can help address?

The Pancreatic Cancer Action Network has set a goal to double pancreatic cancer survival by 2020. One obstacle to overcome to achieve that goal is to ensure more researchers and resources are focused on pancreatic cancer.

Historically, progress has been impeded because pancreatic cancer has been understudied, and research into the disease has been underfunded. Pancreatic cancer is the fourth leading cause of cancer-related death in the United States and is predicted to become the second by 2020. Owing to the unique biological and physiological characteristics of this complicated disease, breakthroughs that have meant progress in other cancer types have not translated to pancreatic cancer, leading to a relative five-year survival rate of only 7 percent.

The Pancreatic Cancer Action Network strives to accelerate progress by directly supporting research and advocating for more funding from the National Cancer Institute (NCI) and other relevant government agencies. To date, the Pancreatic Cancer Action Network’s Research Grants Program has awarded 123 grants totaling more than $28 million to talented scientists. In addition, our advocacy efforts have helped increase NCI support for pancreatic cancer research from $17 million when the Pancreatic Cancer Action Network was founded in 1999 to more than $101 million in 2013. We were also instrumental in getting the Recalcitrant Cancer Research Act passed in 2012, which led to the creation of an NCI scientific framework focused on pancreatic cancer.

Our Research Grants Program supports investigators at all career levels conducting research across the spectrum of basic, translational, and clinical studies to ensure research progresses from foundational knowledge to clinical trials that potentially lead to more effective treatments.

Your personalized medicine initiative, Know Your Tumor, aims to help determine the best treatments for patients based on their tumors’ molecular profiles. How can this assist the broader patient community?

Pancreatic cancer is a complex disease that presents many treatment challenges and few treatment options. Mortality can be swift. Know Your Tumor is designed to not only determine the best treatment option for patients today based on that individual patient’s biologic and genomic tumor profile, but it is poised to help many patients in the future.

The broader goals of the Know Your Tumor initiative are to increase clinical trial enrollment, disseminate best practices in treating the disease, and design future trials that match what patients need. In addition, Know Your Tumor includes a Patient Registry, which will be made available to researchers to ask their own research questions and widely publish their findings.

How does the Community for Progress help research grant recipients leverage their research grants?

The Community for Progress provides grantees with opportunities for mentorship, networking, collaboration, and training. In addition to the research funding that the Pancreatic Cancer Action Network provides for a particular project, inclusion in our Community for Progress helps ensure that grantees have the right tools, relationships, and career support to succeed in the field.

One important aspect of our Community for Progress is our annual Scientific Meeting, where active grantees come together to present progress on their projects through oral or poster presentations. The researchers receive feedback, guidance, and offers for collaboration from their fellow grantees, as well as members of our prestigious Scientific and Medical Advisory Board.

Our grantees have routinely expressed that being part of our Community for Progress is highly beneficial to their research programs and their careers, and they tell us that what we do is unique among private or federal funders.

An evaluation of our Research Grants Program, conducted this year, showed that for every dollar our organization invested in research, our grantees secured an average of $8.28 in subsequent pancreatic cancer research funding, published their work in numerous highly regarded peer-reviewed journals, and remained dedicated and active members of the pancreatic cancer research community.

What do you consider to be the Pancreatic Cancer Action Network’s greatest accomplishments?

In the 16 years since our founding, we’ve focused on attacking pancreatic cancer on all fronts. Early on, we put into place a strategy that includes funding private research, advocating for increased federal research funding, providing support to patients, and raising awareness in communities nationwide through the voices and activities of thousands of passionate volunteers who have joined the fight against the disease. Using this comprehensive approach, we’ve made significant progress in building a national pancreatic cancer movement.

One of our greatest accomplishments is becoming a trusted and important resource for pancreatic cancer patients. We served over 11,000 patients and families last year through our Patient Central program and feel honored to provide information and resources so that patients and their families can make informed decisions. We talk to more patients and families on an annual basis than any other entity in the world. This allows us to represent the patient’s voice through all of our programs. This patient access then gives us the opportunity to implement innovative and cutting-edge initiatives, like Know Your Tumor, which is providing direct services to patients and also providing us information about their needs so that we can implement change. Armed with the patient’s voice, we are able to drive change from the bottom-up, rather than from the top-down. We believe that is our greatest strength, and it enables us to have the most lasting impact on changing the course of history for this disease.

The Pancreatic Cancer Action Network has the ambitious goal to double the survival rate of pancreatic cancer by 2020. What will it take to reach that goal?

Our goal to double survival is ambitious, and it won’t be easy to achieve, but patients deserve nothing less. We have identified five challenges that could prevent us from reaching our 2020 goal, as well as solutions to address them:

  1. We need more researchers and more resources. The brightest minds are attracted to difficult challenges, but they need money to develop solutions. Our plan of attack involves continuing to ensure that pancreatic cancer research receives increased federal and private funding.
  2. Pancreatic cancer clinical trial enrollment is too low. Only 4.5 percent of pancreatic cancer patients enroll, slowing progress toward new diagnostic tools and treatments. To that end, we encourage all patients to consider clinical trials, and we provide free personalized searches through our comprehensive database.
  3. Trials often don’t match what patients need; clinical research doesn’t take into account the heterogeneity of patients and their tumors. We promote running “smart” clinical trials that are based on the needs of real patients and their tumors by learning from patients and driving priority trials.
  4. About 80 percent of patients are seen by a doctor who may see only a few pancreatic cancer patients a year. We want to ensure that all doctors are delivering best practices in pancreatic cancer care. Identifying these best practices through our Patient Registry, as well as disseminating them, is a priority.
  5. Not enough people know about the disease, so not enough people are taking action against it. We’ll continue to heighten awareness by growing our volunteer network, which raises awareness through large-scale community events like our PurpleStride 5K walks. Last year, PurpleStride events raised over $11 million and drew more than 112,000 people. We also recently introduced a new rallying cry, Wage Hope, as a call to action to accelerate progress in the fight against pancreatic cancer. As we raise awareness, we ask our growing number of supporters to join us and Wage Hope.