1. Enacting and fully funding the Pancreatic Cancer Research and Education Act (H.R. 745)

BACKGROUND ON WHY THIS IS A PRIORITY:

We're not making progress on pancreatic cancer and the consequences are deadly

• Pancreatic cancer is one of the few cancers for which survival has not improved substantially over the past 30 years. As a result, pancreatic cancer surpassed prostate cancer to become the 4th leading cause of cancer-related death in 2003, the same year that the effort to double NIH funding was completed.
• In 2008, nearly 38,000 Americans were diagnosed with pancreatic cancer.  A total of 75 percent of them (28,260 people) died within a year of their diagnosis.  Within five years, only 5 percent will still be alive – a mere 1,884 people – and most of these will have a recurrence and eventually succumb to the disease.
  
• Pancreatic cancer is so lethal because scientific research has not yet advanced to the point where early detection tools or treatments have been identified. Currently, these  patients have few options in fighting this leading cancer killer.

It is time to step up the research efforts for the fourth leading cancer killer

• Currently, the National Cancer Institute (NCI) spends less than 2 percent of their budget on pancreatic cancer research.
• Of the more than 5,000 research grants awarded annually by NCI in 2006, only 134 (or approximately 3 percent) were categorized by the NCI as at least 50 percent relevant to pancreatic cancer research.
• In addition, it is estimated that fewer than 150 researchers across the country focus in pancreatic cancer and receive funding through the NCI. Experienced scientists turn to other fields of research and promising young investigators are opting for alternative career paths, shrinking the pipeline of future investigators and lessening the chances that groundbreaking research opportunities will be pursued.
• Young investigators become discouraged about pursuing careers in pancreatic cancer research. The K award system was developed by NCI for the purpose of training and supporting young investigators as they begin a field of study. In the last three years, only five K awards were made in pancreatic cancer.
• Of the more than 160 cancer research centers supported by NCI, only three centers contain Specialized Programs of Research Excellence (SPORES) focused on pancreatic cancer research initiatives. None of them have ever received full funding.
• In 2001, the NCI presented a report called Pancreatic Cancer: An Agenda for Action. As of 2007, few of the recommendations made in that report had been implemented. In the meantime, pancreatic cancer moved from the fifth to the fourth leading cause of cancer death, and 250,000 more Americans died from this disease.

The Pancreatic Cancer Research and Education Act (H.R. 745) would allow us to make true progress

• We have heard repeatedly from the brightest scientific minds in the country pancreatic cancer research is an area that holds great promise – the ideas are there, we just need the funds to pursue them. As a country, we have fallen short in terms of developing and implementing a plan to attack this disease.
• The Pancreatic Cancer Research and Education Act, which is based on The National Plan to Advance Pancreatic Research created by the Pancreatic Cancer Action Network’s highly esteemed Scientific Advisory Board,addresses these shortfalls. Recognizing that the state of the science has advanced since the 2001 NCI report, we released The National Plan to Advance Pancreatic Cancer Research in January 2008.The report identified the highest research priorities, scientific infrastructure needs, and workforce training requirements that are needed to make true progress in pancreatic cancer research.
• If enacted and fully funded, the Pancreatic Cancer Research and Education Act would create a sustainable scientific program for pancreatic cancer with prioritized research projects focusing on the following key advancements:
• Basic research to increase understanding of pancreatic cancer biology, its natural history and the genetic and environmental factors that contribute to its development;
• Diagnostic and screening methods that will help physicians detect pancreatic cancer in much earlier stages, including serum markers and non-invasive imaging technologies that identify lesions and small tumors;
  
• Targeted therapeutics that significantly extend patient survival and quality of life

SUMMARY OF THE PANCREATIC CANCER RESEARCH & EDUCATION ACT (H.R. 745)

Launch a Pancreatic Cancer Research Initiative (PCRI)

• One of the important findings that we have made in pancreatic cancer research is that it is going to take a unique approach to conquer this disease. Pancreatic cancer tumors metabolize chemotherapy differently than other cancers and research in this area is a true specialty. Treatments developed for colon cancer or other types of cancers simply do not work for pancreatic cancer.
• The disease’s unique and especially deadly nature warrants a concerted effort by the NCI to stimulate and foster basic, translational and clinical research.
• Through the Pancreatic Cancer Research Initiative (PCRI), the National Cancer Institute would set the priorities for funding pancreatic cancer research and issue an annual report detailing what projects were funded to meet those priorities and the status of the research.
• One of the challenges with NCI-funded pancreatic cancer research to date has been that the research applications are frequently reviewed by individuals whose specialties lie in other areas. The PCRI calls for a team of pancreatic cancer specialists to be assigned to an “ad hoc” peer-review team for pancreatic cancer related grant applications.

Strengthen and expand Centers of Excellence for pancreatic cancer

• The Pancreatic Cancer Research and Education Act calls for the designation of at least two additional pancreatic cancer Specialized Programs of Research Excellence (SPOREs).

Develop a cadre of committed scientists

• Because of its distinct origin and development, pancreatic cancer requires a committed team of specialized researchers. By instituting specialized training programs for PhD and clinician scientists, the NCI and the NIH can help attract and retain a strong scientific workforce for pancreatic cancer.
• Through the PCRI, the Pancreatic Cancer Research and Education Act calls for the establishment of grant and fellowship programs at the NIH and the NCI to attract talented scientists who have had success in other cancer research fields, and to foster clinical and translational research career development for scientists in the early stages of their careers.

Promote physician and public awareness

• We could be diagnosing more pancreatic cancers in earlier stages, but many primary care providers are unaware of the early signs of the disease. In fact, seven months generally pass before pancreatic cancer patients are diagnosed.. This is time that pancreatic cancer patients simply cannot afford to lose.
• The Pancreatic Cancer Research and Education Act calls for the development of an education program for primary care providers and a communication toolkit for patients and families that focuses on patient choices and care for pancreatic cancer.

2. Securing increased federal research funding for pancreatic cancer through funding for the National Cancer Institute

The federal government is by far the primary funder of cancer research. Therefore, the Pancreatic Cancer Action Network focuses on ensuring that federal funding for pancreatic cancer increases and that the National Cancer Institute (NCI), which is part of the National Institutes of Health (NIH), has accountability for the pancreatic cancer research portfolio.  To accomplish this, the Pancreatic Cancer Action Network educates members of Congress about pancreatic cancer and the specific challenges our research community face. We also join our partners in One Voice Against Cancer (OVAC), a coalition of more than40 cancer-related organizations interested in increasing federal funding for cancer research, to call for specific funding levels for the NIH and NCI. This year, we will again be working with OVAC to make specific recommendations and secure additional funding for the NIH and the NCI.

3.  Enacting the Kennedy-Hutchison 21st Century Cancer ALERT Act with strong language focused on finding answers for high-mortality cancers like pancreatic cancer

The Pancreatic Cancer Action Network has been working with Senators Ted Kennedy (D-MA) and Kay Bailey Hutchison (R-TX) to develop comprehensive cancer legislation that will reform all aspects of cancer research and care.  We are currently working with the Senators to ensure that the legislation includes language that gives special consideration to developing research for the cancers for which mortality remains very high.  We still have our work cut out for us to ensure that the legislation, which will be reintroduced in early 2009, includes strong language that truly paves the way to a new research course for high mortality cancers.  Stay tuned here and to our Congressional Update page for developments on this bill. 

 4. Enacting legislation that would create a National Cancer Fund to create a dedicated source of funding to supplement existing appropriations for the fight against cancer

Recognizing that we need new sources of funding to stimulate new research in pancreatic cancer, the Pancreatic Cancer Action Network has also been working with Representatives Brian Higgins (D-NY) and Steve Israel (D-NY) on legislation that would establish a national trust fund for cancer research.  The effort is an exciting one because its passage would mean cancer research would be better funded, and at more consistent levels – even protecting research that could otherwise have been interrupted during economic downturns, due to emergency funding cuts. Stay tuned here and to our Congressional Update page for developments on this potential legislation.