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Rare Tumors. 2010 September 30; 2(3): e52.
Published online 2010 September 30. doi:  10.4081/rt.2010.e52
PMCID: PMC2994534

Pancreatic Cancer: a rare tumor with a devastating health toll

From the diagnostic perspective, pancreatic cancer is a rare tumor. However, from a mortality perspective, pancreatic cancer is one of the deadliest. In fact, pancreatic cancer is fourth among the leading causes of cancerrelated death in the United States, following lung, colon, and breast, and followed by prostate cancer. In the United States in 2010, estimates show that 43,100 individuals will be diagnosed with pancreatic cancer, and 36,800 lives will be lost. The similarity of these numbers is a stark reminder that the five-year survival rate for pancreatic cancer is a dismal 6%.1

The Pancreatic Cancer Action Network (http://pancan.org/) was founded in 1999 by three visionaries as a small, non-profit, 501(c)(3) patient-based advocacy organization. The mission of the Pancreatic Cancer Action Network is to advance research, support patients, and create hope for those affected by pancreatic cancer. These goals are addressed by a comprehensive approach, including direct funding of scientific and clinical research projects, raising money and awareness through community outreach, educating and supporting patients and their caregivers, and advocating for increased federal funding for pancreatic cancer research.

An important program at the Pancreatic Cancer Action Network is the Patient and Liaison Services (PALS). PALS associates are available by phone or e-mail to answer patients' and caregivers' queries about their diagnosis, treatment, symptom management, etc. Free educational packets are promptly mailed to callers. The PALS program also maintains a database of IRB-approved pancreatic cancer clinical trials throughout the country, helping patients navigate through difficult decisions regarding their treatment options. Finally, a Survivor and Caregiver Network connects those currently facing pancreatic cancer to volunteers who have already experienced it, either themselves or caring for a loved one, providing support and inspiration to those battling the disease.

The Pancreatic Cancer Action Network takes great pride in its grants program, having distributed 56 grants for over $7.2 million since the program's inception in 2003. Applications for the 2011 grants program will be accepted starting in the fall 2010. Nearly $3 million will be awarded this year, representing a 30% increase from last year's funding. The overarching goal of the grants program is to attract and retain bright scientists to the study of pancreatic cancer, and support their research endeavors. Grants are specifically dedicated to researchers early in their careers (Fellowship, Career Development, or Pathway to Leadership Awards) or those taking a somewhat unconventional research approach (Innovative Awards). Broader efforts are also made to connect early-career scientists with more senior mentors, foster collaborations, and provide education and other career support, in order to expand and strengthen the pancreatic cancer research community. More information about the grants program can be found at: http://pancan.org/section_research/.

Funding efforts made by the Pancreatic Cancer Action Network comprise a small, focused portion of the pancreatic cancer research investment, with the National Cancer Institute (NCI) acting as the largest funder. Although pancreatic cancer is a leading cancer killer in this country (a remarkable fact given that it is relatively rare), it receives a small fraction of the NCI's research budget. The historical discrepancy between funding for pancreatic cancer and that for the other top five cancer killers suggests a strong direct proportionality between funding and survival rates (Figure 1). In order to effect change and see progress, it is essential that the NCI create targeted, strategic plans to combat the deadliest cancers.

In addition to advocating specifically for pancreatic cancer research, the Pancreatic Cancer Action Network also leads an effort to develop a federally funded research program for the deadliest cancers, those with five-year survival rates of less than 50%. It is worth noting that most of the tumors represented by this Deadly Cancer Coalition are also rare.

Anyone devoting their time, money, and intellectual focus to rare tumors should be applauded. Although perhaps not as uncommon as some of the diseases studied by authors and readers of this journal, pancreatic cancer still remains drastically understudied and underfunded, relative to its public health toll. The Pancreatic Cancer Action Network strives to accelerate research progress towards early detection, prevention, and therapeutic options for this devastating disease.

Thank you very much for the opportunity to highlight our organization and its mission in this important journal. Please feel free to contact us with inquiries, submissions to our grants program, or to refer patients for information.

Reference

1. American Cancer Society. Cancer Facts & Figures 2010. Atlanta: American Cancer Society; 2010.

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