PanCAN Testimony

Testimony on behalf of the
Pancreatic Cancer Action Network, Inc.
"PanCAN"
Torrance, California

Presenting Public Witness Testimony before the
House Labor/HHS/Education Appropriations Subcommittee
on
Thursday, May 2, 2002

by Paula Kim
Co-Founder & Chairman of the Board
Pancreatic Cancer Action Network, Inc.

Good Morning Mr. Chairman and Members of the Subcommittee. My name is Paula Kim and I am one of three founding members of the Pancreatic Cancer Action Network - fondly known as "PanCAN." I helped start this international patient advocacy organization in my home state of California after my father died from pancreatic cancer in 1998. It took nine active months for him to be diagnosed, and once diagnosed, he died within 75 days. This experience left me with many questions, great sadness and disappointment, as well as an opportunity to turn this experience into action aimed at how this disease can be prevented, accurately diagnosed and better treated.

PanCAN's Mission

My co-founders and I started PanCAN three years ago along with a handful of enthusiastic volunteers who shared our commitment to challenging this disease. PanCAN seeks to focus national attention on the need to find the cure for pancreatic cancer. 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 national patient based advocacy organization specifically focused on pancreatic cancer. We now have a full time staff of seven and thousands of volunteers who comprise our 27 TEAM HOPE affiliates all across the country. We even have members from as far away as Japan and Australia who have traveled to the United States to attend our workshops and learn more about what is being done to combat this disease.

Background on Pancreatic Cancer

Let me begin by telling you a little bit about pancreatic cancer. Approximately 30,300 people in the United States will be diagnosed with pancreatic cancer this year. Pancreatic cancer's 99% mortality rate is the highest of any cancer, and the average life expectancy after diagnosis with metastatic disease is just three to six months. Pancreatic cancer is the 4th leading cause of cancer death in the U.S. for men and women, and only 4% of patients survive beyond five years. Because there is no cure or early detection methods, effective treatment options are extremely limited.

If the outlook were not already bleak, you should also know that the Federal government invests less money per fatality in pancreatic cancer research than in any other leading cancer. Thus, pancreatic cancer -- in the words of the National Cancer Institute - is "disproportionately underrepresented in both clinical and basic research compared with other cancer sites." Despite a budget of over $4 billion in FiscalYear 2002, the NCI - by their estimates - will spend only $24.6 million on pancreatic cancer.

Mr. Chairman, in my work with the pancreatic cancer community and talking with loved ones of patients who have died from this disease, I have heard countless dreadful stories of patients who pursued their symptoms for months or years to finally be diagnosed only to die within days, or were told to take over- the-counter medications for indigestion that wasn't indigestion -- it was pancreatic cancer, or patients who were opened up for curative surgery only to be closed up and told to go home and get their affairs in order. I have heard from researchers who are stifled due to a lack of opportunities, resources, access to critical tissue specimens, and increasingly burdensome bureaucratic requirements. Unfortunately for all of us, this sad state of affairs leaves us with more questions than answers, and more hope than progress. I can attest to a few glimmers of hope shared from patients who were fortunate to team with highly trained pancreatic cancer specialists with proactive attitudes and approaches to dealing with the disease. There was the 37-year-old mother of two young boys who successfully battled her insurance company to cover her treatments in clinical trials only to lose the real battle to the disease at age 40, or the 63-year-old man who six years ago went to three different oncologists who all told him to get his affairs in order, before he found a fourth one willing and able to help him in his quest to live. These few glimmers are the exception and certainly not the rule.

Clearly, many steps must be taken to make up for lost time in investigating and treating this disease. Pancreatic cancer -- the deadliest of all cancers -- requires stable support, scientific depth and diversity to even scratch the surface of need. We must begin with a comprehensive plan of action, a critical mass of researchers, maximize the valuable resources of the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), other key agencies and stakeholders to team up and properly diagnose and treat this dreadful disease. PanCAN represents an entire community of survivors and loved ones who are counting on you and the scientific world to step up to the plate and give this disease and its victims the attention and resources that it deserves.

Here are several areas of urgent concern to the pancreatic cancer community:

Pancreatic Cancer Progress Review Group (PRG)

A few years ago the National Cancer Institute (NCI) established the Pancreatic Cancer Progress Review Group (PRG). As you know, PRGs are disease specific groups comprised of leading researchers, advocates, and experts in cancer charged with identifying and prioritizing scientific needs and opportunities to assist the NCI in developing a national agenda and strategy for implementation that will expedite progress against a specific disease. I was privileged to serve as a member of the Pancreatic Cancer PRG and as Co-Chair on the PRG Health Services Research Committee. Our Pancreatic Cancer PRG Committee issued a report of our recommendations in February, 2001. The report notes that the NCI is clearly aware that substantial increases in pancreatic research must be made to understand, prevent and control this deadly disease. The PRG report states "pancreatic cancer care is complicated, requiring a multidisciplinary approach," and further notes that despite investigators best efforts, "outcomes are nearly always disappointing." The Pancreatic Cancer PRG report identified key steps to be taken to increase support for this disease. PanCAN wholeheartedly endorses the steps outlined by the PRG report, and now it is essential that the NCI complete its planned implementation strategy phase of the PRG and provide adequate funding and leadership to implement the strategy derived from the PRG's recommendations. I would like to bring to your attention several specific initiatives that should be immediately implemented or expanded in order to expedite research on pancreatic cancer.

INCREASE THE NUMBER OF INVESTIGATORS AND SPECIALIZED RESEARCH PROGRAMS FOCUSED ON PANCREATIC CANCER

The Pancreatic Cancer PRG data suggests that there are less than 10 principal investigators who have multiple grants or a primary focus on pancreatic cancer. The pool of investigators with expertise in pancreatic cancer is very small. We must assemble a critical mass of both new and established researchers that is deep and diverse in talent and expertise. This is the cornerstone and hallmark of significant research progress and has been favorably demonstrated in all areas of disease. Several factors may contribute to this unnecessary situation. For starters, very few researchers are dedicated to pancreatic cancer research at any level because beginning and established investigators generally focus their careers in cancers that have a plentiful and established funding history as well as institutional commitment.
In addition, low levels of NCI funding have historically resulted in low levels of pancreatic cancer research enthusiasm among scientists. To rectify this situation, PanCAN urges the NCI and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to take specific steps and develop programs that will provide incentives for doctors and Ph.D.s to pursue careers focusing on the pancreas and pancreatic cancer. Pancreatic cancer is the deadliest cancer and poses tremendous scientific challenges. With more investigators and access to more pancreatic cancer patients, the next logical step to combat pancreatic cancer is to develop institutional commitment and specialized programs for this specific disease. Some immediate suggestions include:

Fund A Minimum of Five Pancreatic Cancer SPORE Grants by FY 2004

The NCI has announced that it will fund at least three inaugural pancreatic cancer-specific Specialized Program Of Research Excellence (SPORE) grants next year, assuming that the applications received meritorious scores following peer review. SPORE's were created by the NCI in 1992 to bring to clinical care settings novel ideas that have the potential to reduce cancer incidence and mortality, improve survival, and to improve the quality of life. Laboratory and clinical scientists work collaboratively to plan, design and implement research programs that impact on cancer prevention, detection, diagnosis, treatment and control. Mr. Chairman, since pancreatic cancer patients are in such dire need of effective treatments, programs and services, PanCAN urges the NCI to fund no less than five SPORE grant programs by FY 2004, with additional grants in the successive funding periods. By immediately establishing five SPORE's the NCI will foster and create the institutional commitment and individual research focused on pancreatic cancer that helps create the critical mass required for research progress.

Continue to Fund Pancreatic Cancer Grants Above the Current Payline

For FiscalYear 2002, the NCI increased the payline for 100% relevant pancreatic cancer research by 50% above the overall payline for NCI research grants. (This means that 100% relevant pancreatic cancer grants will be funded at a payline level that is 50% higher than grants with less than 100% or no relevance to pancreatic cancer.) This bold initiative implemented by the NCI was a clear statement that more research must be undertaken in the area of pancreatic cancer. Because pancreatic cancer basic and clinical research progress lags significantly, PanCAN urges the NCI to continue to fund 100% relevant pancreatic cancer grants at a level 50% above the payline for all grant mechanisms in FY 2003.

DEVELOP KEY RESOURCES AND INFRASTRUCTURE TO BETTER UNDERSTAND AND DETERMINE HOW THE MOLECULAR BIOLOGY OF PANCREATIC CANCER CAN BE HARNESSED FOR THERAPEUTIC GAIN

Pancreatic cancer is a unique disease that is difficult to study. Molecular aspects of normal cell differentiation and development of the pancreas are poorly understood. Molecular processes involved in the development of benign and malignant pancreatic diseases are known in part, although the nature and origin of the precursor cells for pancreatic cancer have not been delineated. Developmental biology techniques should prove useful for investigating cell lineage relationships in various animal models of pancreatic cancer and ultimately, in human disease. For example, novel cell labeling techniques have been developed for tracing cell lineage (i.e., mapping precursor-progeny relationships) in vivo during embryonic development. Understanding precursor/progenitor cell biology has greatly aided the development of diagnostic and therapeutic tools in leukemias and in cancer immunology. It is reasonable to anticipate that this knowledge will likewise be valuable for improving pancreatic cancer prevention, diagnosis, and treatment.

Therefore, a high priority of research should be to isolate, characterize, and propagate cells that initially differentiate into the gland itself. These cells, or their immediate descendants, are likely targets for the various agents that cause pancreatic cancer and may be potential targets for chemoprevention. A number of inherited and acquired tumor-associated gene alterations present in pancreatic cancer have been identified, but significant gaps exist in our understanding of how these alterations occur in pancreatic cancer development, affect the interaction of signaling proteins in the course of the cancer, and influence molecular interactions between tumor and host. It remains a challenge to better understand and determine how the molecular biology of pancreatic cancer can be harnessed for therapeutic gain.

DEVELOP BETTER METHODS TO CONTACT AND TRACK PANCREATIC CANCER PATIENTS TO DEVELOP OPTIMAL DATA

As I have already noted, most pancreatic cancer patients usually die quickly--within three to six months of being diagnosed -- and some in even less time. I recently learned that traditional National Cancer Institute research protocols compile a database of patients over several years for large studies. This is a problem with pancreatic cancer patients, as 99% of the patients are no longer alive to provide information to the researchers attempting to identify environmental and genetic factors, and gene-environment interactions that may have contributed to the development of the disease. For this reason, PanCAN urges that new "ultra-rapid methods" for case ascertainment must be developed, tested and implemented so that pancreatic cancer patients can be contacted very quickly after their diagnosis. Such methods may include immediate electronic reporting from pathology, radiology, and laboratory medicine departments, which would provide information on new patients in a timely manner.

INCREASE AWARENESS AND EDUCATIONAL PROGRAMS ON PANCREATIC CANCER

There is a great lack of information on pancreatic cancer, its risk factors and its symptoms among both medical professionals and the public. Until effective early detection methods are developed for this disease, awareness programs must be developed to educate people about risk factors, symptoms and symptom management for pancreatic cancer. PanCAN urges the CDC and the NCI to identify and coordinate the public health role in combating pancreatic cancer, so that the agencies can provide the public with adequate information on understanding the known risk factors, talking to one's doctor about this disease, selecting appropriate symptom and pain management for pancreatic cancer, and obtaining quality end of life care for those with advanced stage terminal disease.

ONE VOICE AGAINST CANCER

PanCAN is a proud member of One Voice Against Cancer (OVAC), a collaboration of more than 40 public interest groups representing 15 million Americans impacted by cancer. Last year, cancer claimed the lives of more than 500,000 American, while another 1.2 million are newly diagnosed each year. For this reason, PanCAN joins OVAC in urging you to include the following funding levels in the FY 2003 Labor/HHS/Education Appropriations bill:

• $27.3 billion for the NIH in FY2003. This will fulfill the commitment to double NIH funding by FY2003.

• $5.69 billion for the NCI, the amount the NCI Director is requesting for a comprehensive effort to win the war against cancer. This "professional judgment budget" represents the greatest hope and opportunity for Americans with cancer, as well as those who will be newly diagnosed this year -- many of whom will have deadly forms of cancer of which we still know too little and for which we must investigate with new research.

• $199.6 million for the NIH Center for Minority Health and Health Disparities to enable the Center to fulfill its important mission, particularly as it concerns the disproportionate incidence, morbidity, and mortality that cancer has in many racial and ethnic minority populations. Specifically, we call upon Congress to double the financial commitment to the Center over the course of the next three fiscal
years. This will be attained through 26 percent increases in each year and will allow the Center to meet emerging priorities made even more apparent by the doubling of the overall NIH budget during the past five years.

• $348 million for cancer education, outreach, prevention and screening efforts through the CDC which applies the important research done at NIH to those touched by cancer. CDC's Cancer Prevention and Control programs provide vital cancer education, outreach, prevention and screening efforts that have a positive impact on the lives of all Americans. Application of NIH and NCI research conducted by CDC is proving to be particularly critical in saving lives, and we urge Congress to continue this important support.

Mr. Chairman, the Federal research enterprise in the United States has made significant advances in combating many devastating diseases over the years. Unfortunately, pancreatic cancer has not been one of these victories. With your support, we can increase the Federal resources dedicated to improving diagnosis and treatment of this disease. Our goal is to make inroads against this disease so that in the near future the diagnosis of pancreatic cancer will no longer be a virtual death sentence for the 30,300 individuals who will be afflicted with this disease this year. The rate of incidence is increasing and is an alarming fact. Let's replace helplessness with hope.

Our motto at PanCAN is "Together, we can make a difference." Mr. Chairman, working with you and your colleagues, along with the NIH, CDC and the scientific community, I know that WE CAN and WILL make a difference in the lives of pancreatic patients and their loved ones.

Thank you for this opportunity to present testimony on behalf of PanCAN.