1. About the
Pancreatic Cancer Action Network
Anitra Engebretson
Director of Patient and Liaison Services (PALS)
ADVANCE RESEARCH. SUPPORT PATIENTS. CREATE HOPE.
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2. Accomplishments
Some of the major accomplishments in the last year:
Funded over $1 million in research grants to 11 scientists
Hosted 1st Scientific Summit
Launched Raise the Cure campaign
Introduced 1st pancreatic cancer legislation Sept 2008,
reintroduced in Jan 2009 – The Pancreatic Cancer Research &
Education Act (HR 745)
Sent 18,144 messages to Congress
Served 9,000 patients and families through PALS
Expanded the only comprehensive patient educational library for
pancreatic cancer in the world
Hosted 6 symposia
Hosted 321 volunteer-driven events across the country
Significant increase in public visibility about pancreatic cancer;
640 media hits with reach in excess of 50 million
Copyright © 2009 Pancreatic Cancer Action Network
Comprehensive approach
What makes our organization comprehensive?
Funding research
Demanding more aggressive federal research funding
Providing patients and caregivers with reliable information to
make informed decisions with their healthcare
teams
Helping individuals and communities work together to raise
awareness and funds for pancreatic cancer
Copyright © 2009 Pancreatic Cancer Action Network
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3. Research
Strategically funding initiatives in early detection,
translational research, therapeutics, and increasing the
number of investigators working in pancreatic cancer in
order to expedite progress in the field.
Copyright © 2009 Pancreatic Cancer Action Network
Research FY08-09
Research Funding
• 38 Scientists funded by June 2008 = $3.7 million
Career Development Awards and Pilot Grants
• Raise the Cure – launched in January 2008
A comprehensive strategy and action plan to put pancreatic
cancer research on the fast track to finding a cure
Private Funding: $25 million in next 3 years
Federal Funding: $170 million through The Pancreatic
Cancer Research & Education Act
Copyright © 2009 Pancreatic Cancer Action Network
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4. Research Grants: 2003 – 2008
Dartmouth College
University of Washington
Hanover, NH
Seattle, WA
Fred Hutchinson Cancer Research Center Dana Farber Cancer Institute
University of Massachusetts
Seattle, WA Boston, MA
Medical School, Worcester, MA
Massachusetts General Hospital
Boston, MA
Tufts University
Boston, MA
Mayo Clinic New York University
State University of New York
Rochester, MN New York, NY
Buffalo, NY
Columbia University
New York, NY
Northwestern University
Chicago, IL University of Pennsylvania
Philadelphia, PA
University of California
Johns Hopkins University
San Francisco, CA Indiana University
Baltimore, MD
Indianapolis, IN
University of Maryland,
Baltimore County, MD
Washington University
Duke Medical Center
St. Louis, MO
Durham, NC
University of California
Los Angeles, CA
University of Alabama
Mayo Clinic
Birmingham, AL
Scottsdale, AZ
Mayo Clinic
Jacksonville, FL
University of Florida,
MD Anderson Cancer Center
Gainesville, FL
Houston, TX
Career Development Award (23)
Fellowship/Young Investigator Award (6)
Pilot Grant (9)
Note: 38 grants awarded to 25 institutions across
the United States.
Copyright © 2009 Pancreatic Cancer Action Network
Research
Connecting the Dots & Collaboration
• Understand who is doing what
• Push collaboration amongst researchers and institutions
• Examine the needs of the community as a whole
• Understand the patient’s experience
• Clinical trials database
Copyright © 2009 Pancreatic Cancer Action Network
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5. Government Affairs
Securing additional federal dollars for pancreatic
cancer researchers across the country.
Copyright © 2009 Pancreatic Cancer Action Network
National Cancer Institute Funding
Top Five Causes of Cancer Death
NCI Funding for Top 5 Cancer Killers
(listed in order of mortality rates)
1999
600 2000
2001
500
2002
400
Funding 2003
300
(in millions)
2004
200
2005
100
2006
0 2007
Lung Colon Breast PANC Prost
2008
Copyright © 2009 Pancreatic Cancer Action Network
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6. Government Affairs
• Federal funding for pancreatic cancer has increased
by $69.5M since 1999; from $17.5M to $87M
• Program growth:
Opened Washington, DC office in 2006
Advocacy Days: April 2007, March 2008 and March 2009 –
soon!
Sent 18,000 messages to Members of Congress this year
through our grassroots
And now, RAISE THE CURE
• The Pancreatic Cancer Research & Education Act= an
investment of $170 million to carry out The Plan
Copyright © 2009 Pancreatic Cancer Action Network
Patient and Liaison
Services (PALS)
The premier source of quality, reliable information for
people with pancreatic cancer, their friends and families,
and health professionals.
Copyright © 2009 Pancreatic Cancer Action Network
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7. PALS case management
disease/ mailed
treatment
within
information
24 hours
clinical trials
search customized
pancreatic cancer
education packet
specialized
information
PALS Associate
first-time caller
(patient, caregiver,
friend, family
member or health support
professional) resources
call back with
more questions,
get re-connected
with original
PALS Associate
Copyright © 2009 Pancreatic Cancer Action Network
Pancreatic cancer educational packet
All materials reviewed
by our Medical Advisory Board
Booklets
Informational sheets
Newsletter
Website
Symposia
Copyright © 2009 Pancreatic Cancer Action Network
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8. Resources
Clinical Trials Database
Treatment Information
Pancreatic cancer specialists
Supportive Care: Diet and Nutrition, Side Effect Management
Survivor and Caregiver Network
Support Groups
Financial Resources
Copyright © 2009 Pancreatic Cancer Action Network
PALS monthly contacts 2002-2009
FY 02-03 FY 03-04 FY 04-05 FY 05-06
Pancreatic Cancer Action Network
FY 06-07 FY 07-08 FY 08-09
1200
Patient and Liaison Services (PALS)
1000
Number of contacts
800
600
400
200
0
Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr May Jun
Month
Copyright © 2009 Pancreatic Cancer Action Network
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9. Referrals to PALS
How do people learn about PALS?
Health professionals (doctors, nurses, social workers, therapists)
American Cancer Society
National Cancer Institute (NCI)
Cancer resource centers/libraries
Internet
Other cancer/health organizations
Media (newspaper)
PanCAN volunteers!
Copyright © 2009 Pancreatic Cancer Action Network
Copyright © 2009 Pancreatic Cancer Action Network
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10. Community Outreach
• Educating the community
• Health professionals
• Members of Congress
• Media
• Donors
• General public
• In FY 07-08
• Raised $3.6 Million in FY07-08
• Hosted 321 events in FY07-08
• Distributed 1476 healthcare professional packets
• Highlighted in 640 online and print media articles with a reach in
excess of 50 million
• Increased public awareness and visibility
Copyright © 2009 Pancreatic Cancer Action Network
Community Outreach
Atlanta Affiliate
• Affiliate Coordinator – Liz Irvin: eirvin@pancanvolunteer.org
• Events: PurpleStride Atlanta – November 15, 2008, over 700 participants
• Comedy Night, Braves Game, Dinner and Auction, Bluegrass Music
Festival.
• http://www.pancan.org/Volunteer/ga/at/index.html
Savannah Affiliate
• Affiliate Coordinator- Jane Miller: janemiller@pancanvolunteer.org
• Events: Walk on the Beach, Pancake Breakfast
• Meetings: Last Tuesday of the month, Panera Bread in Savannah
• http://www.pancan.org/Volunteer/ga/se/index.html
Community Representative, Macon
• Joann Bishop: jbishop@pancanvolunteer.org
• Hosted Rush to Tackle Pancreatic Cancer in October 2008
• Distributes PALS Packets to health professionals
• Attends Health Fairs
Copyright © 2009 Pancreatic Cancer Action Network
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11. www.pancan.org
877-272-6226
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