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PanCAN Testimony

Testimony on behalf of the

Pancreatic Cancer Action Network, Inc. (PanCAN)
2141 Rosecrans Avenue, Suite 7000
El Segundo, CA 90245

Presented to the Labor, Health and Human Services and Education Subcommittee of the House Appropriations Committee

By Julie Fleshman, President & CEO, PanCAN, on March 30, 2007

Dear Chairman Obey, Ranking Member Walsh, and Colleagues:

On behalf of the Pancreatic Cancer Action Network (PanCAN), I thank you for this opportunity to present written testimony to the Labor, Health and Human Services, and Education Subcommittee of the House Appropriations Committee.

PanCAN was founded in 1999 to focus national attention on the need to find the cure for pancreatic cancer. Based in Los Angeles, California, we provide public and professional education that embraces the urgent need for more research, effective treatments, prevention programs, and early detection methods. PanCAN is the first and only national patient based advocacy organization specifically focused on pancreatic cancer. We now have eighty volunteer-led affiliates in communities across the country, comprised of thousands of volunteers who seek to increase awareness about this disease, raise funds, and voice their concern that there is a desperate need to find a cure for pancreatic cancer.

This year, over 37,170 Americans will be diagnosed with pancreatic cancer and 33,370 will die from this disease. That means that every 14 minutes, someone in the United States is diagnosed with pancreatic cancer and every 16 minutes, someone dies from it. Men are 20% more likely to get pancreatic cancer than women and African Americans have a 40 to 50% higher risk than other races and ethnicities. The facts on pancreatic cancer are striking:

Pancreatic cancer is the 4th leading cause of cancer death among men and women in the Untied States and the third leading cause of cancer death among 40-59 year old men.
There are no early detection methods and no effective treatments, other than a 70 year old surgical procedure. In general, chemotherapy drugs are used in pancreatic cancer patients to alleviate symptoms, not to provide curative treatment. Tarceva, the only recently approved drug treatment for pancreatic cancer only extends life, on average, by two weeks.
Left with no other options, most pancreatic cancer patients die within three to six months of their diagnosis. In fact, 75% of pancreatic cancer patients die within the first year of their diagnosis.
Only 5% of patients survive more than 5 years.

What else do we know about pancreatic cancer? We know that while the overall cancer death rate for cancer has gone down, not all cancers are seeing progress. In fact, pancreatic cancer survival has not improved substantially in the last quarter century. We also know that despite it being the deadliest form of cancer, it receives the least amount of research funding from the federal government of all major cancers and, as a consequence, is decades behind other cancers in terms of research discoveries (please see chart, below). Federal funding for pancreatic cancer research totaled $66.7 million in Fiscal Year 2005 (FY 05), the latest year for which National Cancer Institute (NCI) statistics are available. This means that a mere 1.5% of NCI’s $4.798 billion dollar budget is spent on research discoveries for the 4th deadliest cancer.

NCI Funding for Top 5 Cancer Killers
(listed in order of mortality rates)

Pancreatic Cancer Research is at a Crucial Stage: We are Just Beginning to find Clues
Our research community has been very resourceful with this small amount of funding and we have seen some important developments in our understanding of this disease. For example, with the help of NCI funding, pancreatic cancer researchers have made some important steps forward:

A mouse model has been developed that will help researchers learn more about the development, detection and treatment of pancreatic cancer. The work being done on this model is now international in scope.
Researchers at the University of Pittsburgh have made some interesting discoveries with biomarkers that could, eventually, lead to a potential early detection test. This research is in the beginning stages. The amount of time that it will take to develop an actual screening test, years or decades, depends heavily on the amount of funding we can invest in this research now.
One of the problems with pancreatic cancer has been a high recurrence rate. We may now have a clue that could be used to address this issue. Researchers at the University of Michigan Comprehensive Cancer Center have discovered the cells of origin for pancreatic cancer in mice. The work now needs to move from mice to men. Again, this research holds immense promise, but will require a sizeable investment to deliver on that promise.
Researchers in the Specialized Programs of Research Excellence (SPORE) program at the Mayo Clinic and Johns Hopkins University have demonstrated a genetic basis for the familial clustering of pancreatic cancer. This work, which has been expanded through PACGENE, a consortium of centers with expertise in pancreatic cancer, has already identified major risk factors for pancreatic cancer, including smoking. Major work within high risk families in terms of genetic testing, messaging for risk factors to families with an elevated risk, and other assessment/education initiatives are the next step.

These findings are important, but they are the equivalent of having the materials to make the bricks to build our house. It is imperative that the National Cancer Institute has sufficient funds to continue this work. Without this continued investment, the materials we have gathered to date will be lost and so will our potential to give pancreatic cancer patients the hope they so desperately need. For example, without increasing NCI’s budget beyond what they need to just continue operations, more money will be diverted from pancreatic cancer basic scientific research, such as the early detection research happening at the University of Pittsburgh, to go into the “big science” initiatives like nanotechnology. While we do not deny that nanotechnology holds promise for medical research, it will be some time, if ever, before it is relevant to pancreatic cancer. For pancreatic cancer to advance, basic science must be a priority so that we can better understand the basic tumor biology of pancreatic cancer and the biomarkers that can lead us to detect pancreatic cancer.

Unfortunately, the $66.7 million – as low as that is – is not 100% or even primarily related to pancreatic cancer. The method that the NCI uses to show how much funding goes toward any particular cancer is to count any grants that are at least 25% relevant in the total. Unfortunately, to date, the pancreatic cancer research community has not had a lot of success with finding connections between pancreatic cancer and other types of cancers. For example, grants that are mostly relevant to colon cancer do not generally hold much hope for our community as the grants that are more directly relevant to pancreatic cancer, despite both being considered gastrointestinal (GI) cancers.

There are currently three pancreatic cancer SPORES which account for approximately $8 million of the $66.7 million allocated to pancreatic cancer – this research is 100% focused on pancreatic cancer. The remainder of the portfolio, $58.7 million, includes funding for awards in the R, P, and K categories, which are important for pancreatic cancer, but we have no way of truly knowing how much of that is actually invested in pancreatic cancer because the way the grants are scored cannot produce a report that provides the research community, the public, the NCI, or Congress with a solid number.

Moving Pancreatic Cancer Research Forward Depends on NEW Funds for the NCI
So, how do we move pancreatic cancer forward? First and foremost, we must increase the National Cancer Institute’s budget for Fiscal Year 2008 beyond what is needed to maintain current operations. In FY 2006 funding to the National Institutes of Health and to the National Cancer Institute was cut. While there were modest increases for FY 2007, NIH funding levels since FY 2003 have fallen far short of even keeping pace with inflation. Funding must now be provided for growth, not just keeping pace with inflation. Pancreatic cancer researchers have learned how to do more with less, but we now must give them the opportunity to do more with more.

To this end, PanCAN joins our partners in the One Voice Against Cancer (OVAC) coalition in supporting the NCI Director’s Professional Judgment Budget, which calls for a total of $5.8 billion for the NCI in FY 08, excluding NCI’s contribution to the NIH Roadmap. At this level, full funding could be provided for the pancreatic cancer SPORES and for basic scientific research so that we can better understand the biology of the disease and aid efforts to find an early detection tool so that we can begin to see a change in pancreatic cancer’s dismal statistics.

Recognizing the current budget realities, PanCAN joins OVAC and the broader public health community to call for a minimum 6.7% increase for both the National Institutes of Health (NIH) and the National Cancer Institute (NCI). It is important to note that NCI needs a minimum of $283 million over FY 07 levels, just to maintain current projects. Maintaining current funding means significantly limiting potential progress in pancreatic cancer – a scenario that is unacceptable to our shared constituents who are currently loosing their loved ones to pancreatic cancer in a matter of months. We therefore join OVAC to urge you to provide a minimum of a $321 million increase for NCI which would bring NCI’s budget to $5.119 billion for FY 08.

Increasing funding for the NCI also requires an increase for the NIH. Therefore, PanCAN joins the One Voice Against Cancer (OVAC) coalition and the broader public health community to urge Congress to provide $30.9 billion for the NIH, a $1.9 billion increase over FY 2007, representing a 6.7% increase. We call on Congress to continue similar increases for each of the next three years so that we can makeup lost ground.

Basic Scientific Research and the SPORE Program are Essential for Continued Progress in Pancreatic Cancer Research
As mentioned above, PanCAN is deeply concerned that NCI’s commitment to basic scientific research not be allowed to falter. If NCI does not do the basic research for the diseases like pancreatic cancer, who will? The fact is that pancreatic cancer continues to be a leading killer largely because there are no detection tools to diagnose the disease at an early stage, when surgical removal of the tumor is still a possibility. It is essential that NCI has sufficient funding to provide grants to the researchers working at the top medical centers so that they can continue to push the early stage diagnosis work forward.

Further, the SPORE program is also essential to these efforts because these grants are one of the only mechanisms that are 100% relevant to pancreatic cancer. While we are very supportive of this program, we do have two concerns: 1) while three pancreatic cancer SPORES were created in 2003, they have never been fully funded and 2) the way in which pancreatic cancer SPORE grant proposals are evaluated impairs their ability to be successful.

A fully funded pancreatic cancer SPORE should be in the range of $5 million. The three currently funded pancreatic cancer SPORES are at the University of Minnesota (funded at $3 million), MD Anderson (funded at $2.5 million), and the University of Alabama at Birmingham (funded $2.5 million). By shortchanging these SPORES, their success has been put in jeopardy. This problem becomes compounded with respect to the second issue; by shortchanging the funding, the SPORES ability to remain competitive becomes further impaired. Bringing us to point two, none of the pancreatic cancer SPORES have been through the full 5 year cycle and yet are currently being reviewed against much more developed SPORE programs. For example, the breast and prostate cancer SPORES were first developed in the 1990s and therefore have had both the time and research infrastructure to build a robust program that can feed further success with those cancers. Pancreatic cancer has not had the same luxury of time to build a comparable program.

While historically, NCI has awarded SPORE grants by looking at the best research for each organ site, they recently responded to shrinking resources by making the decision to evaluate all of the SPORE grant applications against one another, effectively pitting pancreatic cancer against the more established SPORE programs. PanCAN and the pancreatic cancer research community have grave concerns that if NCI’s commitment to pancreatic cancer research through the SPORE program is allowed to diminish, pancreatic cancer research will fall even further behind. We therefore are asking the Committee to not only push for full funding for the three existing SPORES, but also to urge NCI to use separate pay lines for each cancer so that we can be assured that the best science for pancreatic cancer research will have the opportunity to move forward.

Complicating the SPORE issue, is a report that is slated to be issued by the Translational Research Working Group (TRWG) in June 2007. While we have not seen the report, we are deeply concerned that NCI may decide to put a hold on SPORE research while the strategies contained in the TRWG report are discussed and implemented. This process could take considerable time. We therefore ask the Committee’s assistance in ensuring that research in the pancreatic cancer SPORE program will not be put on hold while we are waiting for this report to be released, debated, and implemented.

Closing
Mr. Chairman, as you are well aware, research is the key. More people are surviving cancer today than any other time in history. Unfortunately, these achievements are not extended to the vast majority of pancreatic cancer patients. We urge you to provide America’s world-renowned research enterprise with the funding levels necessary for investigators to continue and expand their work in pancreatic cancer so that our community will also have the benefit of screening protocols, effective treatments and therapies that will one day lead to the eradiation of all cancers – including pancreatic. On behalf of the 37,170 patients who will be diagnosed with pancreatic cancer in 2007, I urge you to support increased funding for cancer research, treatment and prevention programs in your FY 08 bill.

Testimony on behalf of the

Pancreatic Cancer Action Network, Inc. (PanCAN)
2141 Rosecrans Avenue, Suite 7000
El Segundo, CA 90245

Presented to the Labor, Health and Human Services and Education Subcommittee of the Senate Appropriations Committee

By Julie Fleshman, President & CEO, PanCAN, on April 27, 2007

Dear Chairman Harkin, Ranking Member Specter, and Colleagues:

On behalf of the Pancreatic Cancer Action Network (PanCAN), the first and only national patient based advocacy organization specifically focused on pancreatic cancer, I thank you for this opportunity to present written testimony to the Labor, Health and Human Services, and Education Subcommittee of the Senate Appropriations Committee.

This year, over 37,170 Americans will be diagnosed with pancreatic cancer and 33,370 will die from this disease. Men are 20% more likely to get pancreatic cancer than women and African Americans have a 40 to 50% higher risk than other races and ethnicities. The facts on pancreatic cancer are striking:

Pancreatic cancer is the 4th leading cause of cancer death among men and women in the Untied States and the third leading cause of cancer death among 40-59 year old men.
There are no early detection methods and no effective treatments, other than a 70 year old surgical procedure. In general, chemotherapy drugs are used in pancreatic cancer patients to alleviate symptoms, not to provide curative treatment. Tarceva, the only recently approved drug treatment for pancreatic cancer only extends life, on average, by two weeks.
Left with no other options, most pancreatic cancer patients die within three to six months of their diagnosis. In fact, 75% of pancreatic cancer patients die within the first year of their diagnosis.
Only 5% of patients survive more than 5 years.

What else do we know about pancreatic cancer? We know that while the overall cancer death rate for cancer has gone down, not all cancers are seeing progress. In fact, pancreatic cancer survival has not improved substantially in the last quarter century. We also know that despite it being the deadliest form of cancer, it receives the least amount of research funding from the federal government of all major cancers and, as a consequence, is decades behind other cancers in terms of research discoveries (please see charts, below). Federal funding for pancreatic cancer research totaled $66.7 million in Fiscal Year 2005 (FY 05), the latest year for which National Cancer Institute (NCI) statistics are available. This means that a mere 1.5% of NCI’s $4.798 billion dollar budget is spent on research discoveries for the 4th deadliest cancer.

NCI Funding for Top 5 Cancer Killers
(listed in order of mortality rates)

There is no question that funding drives progress. The mortality numbers have decreased for every other major cancer killer (lung, colon, breast, and prostate cancers). The only one that has not decreased is pancreatic cancer. Mortality for pancreatic cancer has actually increased.

Top 5 Cancers, Mortality (listed in order of mortality rates)

A mouse model has been developed that will help researchers learn more about the development, detection and treatment of pancreatic cancer. The work being done on this model is now international in scope.
Researchers at the University of Pittsburgh have made some interesting discoveries with biomarkers that could, eventually, lead to a potential early detection test. This research is in the beginning stages.
One of the problems with pancreatic cancer has been a high recurrence rate. We may now have a clue that could be used to address this issue. Researchers at the University of Michigan Comprehensive Cancer Center have discovered the cells of origin for pancreatic cancer in mice. The work now needs to move from mice to humans. Again, this research holds immense promise, but will require a sizeable investment to deliver on that promise.
Researchers in the Specialized Programs of Research Excellence (SPORE) program at the Mayo Clinic and Johns Hopkins University have demonstrated a genetic basis for the familial clustering of pancreatic cancer. This work, which has been expanded through PACGENE, a consortium of centers with expertise in pancreatic cancer, has already identified major risk factors for pancreatic cancer, including smoking. Major work within high risk families in terms of genetic testing, messaging for risk factors to families with an elevated risk, and other assessment/education initiatives are the next step.