PanCAN Testimony
Testimony on behalf of the
Pancreatic Cancer Action Network, Inc.
(PanCAN)
2221 Rosecrans Avenue. Suite 131
El Segundo, CA 90245
Presented to the House Labor, Health and Human Services
and Education Subcommittee of the House Appropriations Committee
by Paula Kim
President & Founder
May 7, 2003
Dear Chairman Regula and Colleagues:
My co-founders and I started PanCAN four 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 and only national patient based advocacy
organization specifically focused on pancreatic cancer. We now have
a full time staff of 12, and over 50 "Team Hope" 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. We are grateful to the Congress and to NCI for
their leadership in beginning to address the needs of pancreatic
cancer and are deeply committed to working closely with NCI and
all federal agencies in battling and eradicating pancreatic cancer.
Background on Pancreatic
Cancer
This year, approximately 30,700 people in the United
States will be diagnosed with pancreatic cancer, and 30,000 people
will die from this disease. Pancreatic cancer's 99% mortality rate
remains 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.
While good progress is being made in early detection,
research and treatment programs for some cancers this
is clearly not the case for pancreatic cancer.
There are many factors that lead to pancreatic cancer's
ranking among the deadliest cancers. First, there are less
than 10 fully funded researchers nation-wide who are specifically
dedicated to this disease. Second, there are limited
funding opportunities for researchers who want to study this disease.
The combination of few dollars and few researchers means there has
been very little scientific progress.
PanCAN has outlined opportunities below for the Federal
government to take specific actions to facilitate progress in combating
this disease.
1. Provide Adequate
Funding Increases for the NIH, NCI and CDC in FY 04.
PanCAN joins other cancer advocacy organizations in
expressing its disappointment in the meager 2.6 % increase that
the President has proposed for the National Institutes of Health
(NIH) for FY 04. Since a large portion of the current National Cancer
Institute (NCI) budget is already committed to funding existing
cancer programs, a 2.6 % increase will barely cover the cost of
inflation for programs already in place. Smaller, deadly diseases
like pancreatic cancer need new research programs that will investigate
the causes of these illnesses. (Pancreatic cancer is already sorely
under-funded and is estimated to receive only $33 million in Federal
research support in 2003 -- which is less than 1% of the total NCI
budget of $4.6 billion for FY 03 and the lowest funding of all major
cancers.) New research programs are needed for pancreatic cancer
so that real breakthroughs can be made in identifying and developing
treatments for this disease. Furthermore, we need to continue the
momentum that has been started by doubling the NIH budget over the
last five years so that true scientific discoveries can be made
for all cancers. Continuing funding at essentially the same pace
is only helpful for diseases with large research programs already
in place; it does next to nothing for diseases that need to significantly
expand their research programs.
We join our colleagues in the "One Voice Against Cancer"
(OVAC) coalition in urging Congress to include a minimum funding
of $29.6 billion for the NIH (an 8.5% increase above the President's
request for last year) to keep up with the agency's expanded research
portfolio and also have additional money available to start new
research programs. PanCAN and OVAC also support a funding level
of $5.9 billion for the NCI for FY 04 -- the amount proposed in
the NCI Professional Judgment Budget.
We also urge the Committee to provide $200 million
for the National Center on Minority Health and Health Disparities
(NCMHD) in FY 04 to advance its critical work coordinating and advancing
health disparities research across the NIH. Providing NCMHD with
this strong foundation will enable researchers to more rapidly expand
our growing knowledge about health disparities so we can develop
and enhance initiatives geared to reduce and ultimately eliminate
disparities in many chronic diseases, including cancer.
The Center for Disease Control's (CDC) education,
outreach, prevention and screening services are another critical
component in conquering cancer because these programs bring our
research advances into the lives of all people to help prevent premature
death from cancer. For this reason, PanCAN joins OVAC in urging
the Committee to provide $364 million for seven proven CDC cancer
programs, including $20 million for the National Comprehensive Cancer
Control Program and $60 million for the National Program of Cancer
Registries.
2. Develop a Mechanism to Fund
Meritorious Projects from the Non-Funded SPORE Grants and Provide
Program and Planning Grants for Highly Motivated Pancreatic Cancer
Researchers.
PanCAN is pleased to see the unprecedented amount
of interest from the scientific community responding to the NCI
Pancreatic Cancer Specialized Program of Research Excellence (SPORE)
call for applications. However, there were more applicants than
can be funded.
Thus, a mechanism needs to be developed to fund meritorious
projects within the unfunded SPORE applications to help centers
develop their translational research programs in pancreatic cancer.
Funding highly meritorious projects from institutions
and centers that were not awarded a pancreatic cancer SPORE grant
will be a key element to their institutional ability to maintain
a commitment to pancreatic cancer research programs as well as develop
effective research programs within the field of pancreatic cancer.
Without funding of these single-meritorious projects,
the interest in pancreatic cancer research generated through recent
NCI initiatives will be unsustainable at the institutions that have
invested time and resources to develop the research programs necessary
to compete for a SPORE grant. As you know, it takes a tremendous
amount of scientific and investigator-related resources to develop
the programs upon which a SPORE application is based. In addition,
funding key research projects is essential to fueling the interests
of top-notch and early career scientists in the field of pancreatic
cancer.
Commitments aimed at program development will help
attract investigators to the field of pancreatic cancer so that
we can build a critical mass of scientists focused on this disease.
The NCI's own strategic plan also recommends that NCI "fund highly
meritorious projects within unsuccessful pancreatic SPORES or program
project applications."
We strongly urge the NCI to fund all of
the meritorious individual projects from the non-funded SPORE grants
so that innovative research proposals do not lay dormant and we
continue to maintain the interest of top-notch scientists in the
field of pancreatic cancer. We also urge the NCI to provide program
and planning grants for the unfunded yet highly motivated pancreatic
cancer researchers.
3. Create a Sustained Mechanism
to attract Early and Experienced Investigators to this Field of
Pancreatic Cancer.
As you may recall, in fiscal year 2002, the NCI formally
extended the pay line for grants that were 100% relevant to pancreatic
cancer. We understand that this initiative, according to the scientific
community, was viewed as one of the single most important initiatives
ever to attract both young and experienced investigators to develop
careers in pancreatic cancer. We commend NCI for its leadership
in helping to develop the field of pancreatic cancer research through
this initiative. We urge the NCI to continue this initiative
with a sustained multi-year effort to attract early and experienced
investigators to the field of pancreatic cancer so we can build
a critical mass of scientists focused on this disease.
4. Implement the Short-Term and Medium-Term Strategies as Identified
in the Strategic Plan for Addressing the Recommendations of the
Pancreatic Cancer Progress Review Group.
We at PanCAN commend the NCI for beginning to take
the steps to fulfill its commitment to implement the report of the
Pancreatic Cancer Progress Review Group (PRG) a national agenda
of the research priorities for pancreatic cancer. Most recently
the NCI has developed a "Strategic Plan for Addressing the Recommendations
of the Pancreatic Cancer Progress Review Group" to further detail
and prioritize the research needed on this disease. We
urge the NCI to move forward in FY 04 and implement the short-term
and medium-term strategies as identified in the Strategic Plan for
the Pancreatic Cancer PRG.
5. Implement Rapid Case Ascertainment
for Tracking Pancreatic Cancer Patients.
Most pancreatic cancer patients die within three to
six months of being diagnosed. Unfortunately, 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 geneenvironment interactions that may have
contributed to the development of the disease.
In last year's Senate Labor/HHS report, the Appropriations
Committee encouraged the NCI "to develop and implement methods for
rapid case ascertainment." 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.
PanCAN urges that new "ultra-rapid methods" for case
ascertainment must be developed, tested and implemented so that
pancreatic cancer patients can be contacted immediately.
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 30,700 individuals
who will be afflicted with this disease this year. The rate of incidence
continues to increase each year. It is time to do something about
this disease. Let's replace helplessness with hope.
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