Download Iowans Living Beyond Cancer

Iowans Living Beyond Cancer:
Thriving Through Survivorship
The Iowa Cancer Survivorship Plan
The Iowa Consortium for Comprehensive Cancer Control
...working together to conquer cancer.
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ACKNOWLEDGEMENTS
Iowans Living Beyond Cancer: Thriving Through Survivorship is the final report of the Lance Armstrong
Foundation (LAF) planning grant received by the Iowa Department of Public Health - Comprehensive Cancer
Control Program (IDPH - CCC). The Patient and Family Resources Implementation Group (IG) of the Iowa
Consortium for Comprehensive Cancer Control (I4C) joined with the staff and tackled this project with enthusiasm
and heart. With their efforts, this project came to fruition, so many thanks to their members.
This project would have not happened without the efforts of the IDPH - CCC staff and especially LAF whose
encouragement and support are an inspiration in itself.
Most importantly, this project and report would not have happened without the incredible sharing, input and real
life stories from the Iowa cancer survivors around the state. When we started the project, we had an idea of how
it would unfold. At the same time, we were open to the process of hearing from survivors themselves and to see
where they would take this project. Thank you to all who participated in and facilitated the January 2007 Iowa
Communications Network (ICN) statewide forums and special thanks to those individuals who committed to serve
on the LAF Steering Committee. They and Gilda’s Club Quad Cities have moved this LAF survivorship planning
grant into a LAF mentorship implementation grant.
We hope this report sheds new light on survivorship knowledge, needs, services and gaps in Iowa. Thank you
all for your time, talent, energy and insight into helping Iowans Living Beyond Cancer AND Thriving Through
Survivorship!
Patient and Family Resources IG
IDPH – CCC Staff
Lance Armstrong Foundation
Theresa Allen
Keri Mercer
Mary Ellen Carano
Bridget Richmond
Kathleen Fleming
Michael Murray
Kellee McCrory
Karen Packer
Wendy Sontag
Melissa Wright
Joan Felkner
Kim Ivester
Jolene Carver
Sara Comstock
Sarah Kitchell
Jill Myers Geadelmann
Holly Smith
Kathryn Sprecher
Schlonge Dermody
Jennifer Long
Amy Nunn
Sue Potts
LAF Steering Committee
Ann Jones
Carol Frazell
Bianca Wolf
Bonni Newton
Anita Shaft
Channon Timm
Chris Bries
Cara Duffy
Dale Siska
Darvi Fauble
Mary Brown
Elizabeth Hendrix
Linda Muller
Christine Carpenter
Francie Crawford
Karen Buechler
Eric Fischer
Kristie Roe
Lori McFate
Lorna Johns
Mary Jane Fitch
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Mary Jo Albee
Michael Lin
Michelle Juehring
Nancy Andreesen
Patricia Hendricks
Paul Thomsen
Tami Liston
Teddy Crawford
Tracey Jurgensmeier
Margo Jerrick
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This is dedicated to the
thousands of cancer survivors
and their families and friends
across the state of Iowa.
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Iowans Living Beyond Cancer:
Thriving Through Survivorship
History
The Iowa Consortium for Comprehensive Cancer
Control (I4C) was formed in 2001 to coordinate the
efforts of those fighting cancer in the state of Iowa. Its
mission is to “work together to conquer cancer” through
the implementation of projects dealing with cancer
prevention, screening and early detection, treatment,
survivorship and research. The I4C consists of over 100
individuals representing 50 agencies and organizations—
including researchers, legislators, insurance companies,
health-care providers, faith-based organizations, hospice,
cancer centers, cancer survivors, health systems, voluntary health organizations, state and local public health
agencies, schools and others agencies with interest in
cancer control.
The I4C’s work is directed by the Iowa Comprehensive
Cancer Control Plan, entitled Reducing the Burden of
Cancer in Iowa: A Strategic Plan for 2006-2011. One
of plan’s goals is to “assure that the quality of life for
every cancer survivor is the best it can be.” The I4C’s
Patient & Family Resources Implementation Group (IG)
concentrates its efforts on the survivorship and quality
of life strategies of this plan. Members of this IG include
representatives from the American Cancer Society (ACS),
Gilda’s Club Quad Cities, the Leukemia & Lymphoma
Society (LLS), the National Cancer Institute’s (NCI)
Cancer Information Service, the Holden Comprehensive
Cancer Center at the University of Iowa, the Bliss Cancer
Center at Mary Greeley Medical Center, and other cancer
treatment facilities and resource centers.
In 2006, the Patient & Family Resources IG implemented
a Lance Armstrong Foundation (LAF) Planning Grant,
called the Iowa Cancer Network for Follow up Care &
Support. For this grant, the IG planned and facilitated
a series of forums in 11 cities across the state to hear
from survivors what they needed to improve their quality
of life. The survivors’ responses led to the development
of this Iowa Cancer Survivorship Plan and a steering
committee to guide it. The following report and plan are
the outcome of these efforts.
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of screening and early detection services, as well as new
research innovations in cancer care and treatment have
improved the outcomes for cancer survivors. Currently, it
is estimated 66% of adults and around 80% of children
survive five years after diagnosis.
What is Cancer Survivorship?
The American Cancer Society estimates that cancer
affects one in three individuals in their lifetime, either
through their own diagnosis and treatment or through
that of a friend or a loved one. According to the National
Coalition for Cancer Survivorship, from the moment
of diagnosis through the balance of life, an individual
diagnosed with cancer is a survivor. Recognizing that
family members, friends, and caregivers are also
impacted by the survivorship experience, they are
survivors as well.
Other cancer survivorship facts:
How many cancer survivors are there?
The National Cancer Institute estimates there are 10.5
million cancer survivors now alive five years after their
diagnosis. Increased cancer prevention, higher utilization
•
•
•
The majority (61%) of cancer survivors are aged 65
and older;
An estimated one of every six people over age 65 is a cancer survivor;
Seventy-nine percent of childhood cancer survivors will be living five years after diagnosis and nearly 75% will be living 10 years following diagnosis.
Source: CDC and NCI
Estimated Number of Cancer Survivors in the United States from 1971 to 2003
12,000,000
1 in 2 men
1 in 3 women
Number
10,000,000
Will
Willbe
bediagnosed
diagnosedwith
withcancer
cancer
8,000,000
6,000,000
4,000,000
66% of adults survive
2,000,000
93
19
95
19
97
19
99
20
01
20
03
91
19
89
19
87
19
19
85
83
19
19
81
79
19
19
77
75
19
73
19
19
19
71
80% of children survive
Year
Data source: NCI Division of Cancer Control and Population Sciences:
Retrieved from http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html#survivor on March 28, 2007.
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Estimated Number of Persons Alive in the U.S. Diagnosed With Cancer by Site (N = 10.5M)
23%
17%
Female Breast
Other
3%
Lung
6%
Melanoma
7%
Hematologic
(HD, NHL, Leukemia)
19%
Prostate
6%
Other GU
(Bladder & Testis)
9%
10%
Gynecologic
Colorectal
Data source: NCI Office of Cancer Survivorship: htttp://cancercontrol.cancer.gov/ocs/
Iowa’s Cancer Survivors
The Iowa Cancer Registry estimates there are 100,000
61. 7%
cancer1993-97
survivors currently in the state.
These survivors
56.3%
1988-92
are strong
and resilient; the graphs below denote the
1983-87
48.0%
change
in 5-year relative survival
rates for males and
1978-82
44.6%
females.
5-Year Relative Survival Rate,
All Sites, Females, All Ages
5-Year Relative Survival Rate,
All Sites, Males, All Ages
Years
This group 0%
is also hopeful
about 60%
their future
willing
20%
80% and
40%
100%
Percent
to help others. The 2007 LIVESTRONG™ Survey for
Post-Treatment Cancer Survivors showed 95% of Iowa
survivors who completed the survey appreciated life more
because of having cancer. Over 80% felt cancer helped
them recognize what is important in life. However, the
survey showed 57% of Iowa cancer survivors wished
they had more follow-up support after completing
treatment. On a positive note, 67% of respondents say
they have helped others through their cancer experience
and 89% say they would like to do more to help other
survivors.
1973-77
40.0%
1993-97
Years
59.3%
1978-82
57.0%
1973-77
20%
40%
60%
48.0%
1983-87
1978-82
44.6%
1973-77
55.7%
0%
56.3%
1988-92
80%
40.0%
0%
100%
Percent
20%
40%
80%
60%
Percent
Graphs from the State Health Registry of Iowa, Iowa Cancer Registry http://www.public-health.uiowa.edu/shri/
1993-97
1988-92
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Years
Years
1983-87
61. 7%
1993-97
64. 0%
62.7%
1988-92
1983-87
1978-82
1973-77
64. 0%
62.7%
59.3%
57.0%
55.7%
100%
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Statewide Survivorship Forums
In order to address the needs of the growing number of
survivors in the state, the Iowa Department of Public
Health (IDPH) - Iowa Comprehensive Cancer Control
Program applied for a one year planning grant from
the LAF in 2006. The LAF funded the project and the
Iowa Cancer Network for Follow-up Care & Support
was created. For this grant, the Patient & Family
Resources Implementation Group of the I4C planned
and facilitated a series of forums in 11 cities across the
state to hear from survivors what they needed to improve
their quality of life. Appendix A shows the invitation
distributed through our I4C network. The grant allowed
IDPH and the I4C to take a comprehensive look at
cancer survivorship by broadening the network of cancer
stakeholders, conducting a statewide assessment of
survivorship activities/services and developing a plan to
address gaps and unidentified needs. survivor Mary Jo Albee of Marshalltown. She spoke of
her experiences in cancer treatment and survivorship.
After a brief introduction of the project and its key
partners, the forum facilitators broke off into separate
discussions about what participants felt cancer survivors
needed to have to live a full and healthy life. During
the discussion, facilitators and/or an assistant recorder
noted comments and helped organize them into broader
categories. After the discussion ended, participants
traveled around the room and ranked their priorities
using stickers. This collaborative process ensured each
survivor ranked the importance of the comments they
made during the discussion. These comments and the
resulting priorities are listed in Appendix B.
Members of the Patient & Family Resources IG of the
I4C and other I4C partners facilitated the discussions,
using a facilitation guide developed by the project team.
The facilitators were trained during a conference call the
week before the forums. Materials used at the forums
were mailed to all facilitators including sign in sheets,
demographic information sheets, information packets,
handouts and additional resources.
The forums were held on January 25, 2007 in Council
Bluffs, Creston, Davenport, Des Moines, Dubuque, Fort
Dodge, Iowa City, Mason City, Ottumwa, Sioux City,
and Waterloo. These multiple sites linked via the Iowa
Communications Network (ICN) so that all participants
could hear the opening welcome and introductions. The
forums were kicked off by keynote speaker and cancer
LYON
OSCEOLA
DICKINSON
WINNEBAGO
EMMET
WORTH
MITCHELL
HOWARD
Mason City
SIOUX
O’BRIEN
CLAY
PALO ALTO
CHEROKEE
BUENA VISTA
POCAHONTAS
KOSSUTH
WINNESHIEK
HANCOCK
CERRO GORDO
FLOYD
WRIGHT
FRANKLIN
BUTLER
CHICKASAW
HUMBOLDT
PLYMOUTH
Sioux City
IDA
Dubuque
Waterloo
GRUNDY
HAMILTON
WEBSTER
CALHOUN
SAC
CLAYTON
FAYETTE
BREMER
Ft. Dodge
WOODBURY
ALLAMAKEE
DELAWARE
BUCHANAN
BLACK HAWK
DUBUQUE
HARDIN
JACKSON
JONES
MONONA
CRAWFORD
CARROLL
STORY
BOONE
GREENE
MARSHALL
BENTON
TAMA
Des Moines
HARRISON
SHELBY
AUDOBON
POLK
DALLAS
GUTHRIE
LINN
Iowa City
POWESHIEK
JASPER
IOWA
CLINTON
CEDAR
SCOTT
JOHNSON
MUSCATINE
Council Bluffs
POTTAWATTAMIE
CASS
MADISON
ADAIR
MARION
WARREN
Creston
MILLS
MONTGOMERY
ADAMS
UNION
KEOKUK
MAHASKA
WASHINGTON
LOUISA
Ottumwa
CLARKE
LUCAS
MONROE
WAPELLO
JEFFERSON
HENRY
FREMONT
PAGE
TAYLOR
RINGGOLD
DECATUR
WAYNE
APPANOOSE
DAVIS
VAN BUREN
LEE
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Davenport
DES
MOINES
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Forum Participants
There were 63 participants spread throughout the forum
sites. Creston did not have any participants.
General forum participant demographic information is
listed below:
• 50 women, 79% ;
13 men, 21%
• 60 Caucasian, 95%;
1 Asian, 1.6% and
1 Other, 1.6%;
1 did not identify
• 6 < age of 30, 9.5%;
11 age 31-40, 17.25%;
13 age 41-50, 21%;
14 age 51-60, 22%;
8 age 61-70, 13%; 11 age 71+ , 17.25%
Forum Results
These forums showed cancer survivors in Iowa face
unique issues. As residents of a rural state, Iowa’s
survivors may have difficulty connecting with other
cancer survivors who face similar issues. A major theme
discussed at these forums was cancer survivors’ need
for psychosocial support. Survivors repeatedly spoke
about the need to be connected with other peers who
have experienced what they have, who have “traveled
the road” of survivorship and can provide additional
support, advice, and information as they navigate their
own cancer journey.
While there are many active groups that provide support
to cancer survivors, there are some cancer survivors that
feel left out. Survivors report barriers such as time and
distance keep them from accessing necessary support
services; others feel the groups they visited did not
discuss issues that were pertinent to them. One young
man voiced his concern that all support groups he
attended targeted older female breast cancer survivors.
He was unable to find someone with a similar diagnosis
or age, and with issues, questions, and challenges that
matched his; therefore he was unable to find the support
he needed.
Survivors also reported they often do not know the right
questions to ask and can be overwhelmed by the wealth
of information that is presented by their healthcare
providers. With trained mentors providing individualized
support, cancer survivors will have a guide walking
alongside them as new questions and concerns arise. This
need is echoed in the National Action Plan for Cancer
Survivorship and the President’s Cancer Panel 20032004 Report, Living Beyond Cancer, which emphasizes
the value of being matched with a “cancer guide” who
can “help collect and explain information and assist the
patient and family in coping and undertaking initial steps
in the care process.”
Steering Committee and Next Steps
As a result of these forums, a steering committee was
formed to provide guidance and help create the Iowa
Cancer Survivorship Plan. This group consists of 15
participants who were interested in continuing their
participation with the project. The steering committee
first met on April 12, 2007, to discuss the forum results.
They also began to form strategies to address the needs
and ranked priorities identified at the community forums.
This draft plan is included as Appendix C. The steering
committee will continue to refine this plan in the future.
Though the Cancer Survivorship Plan is still in development, the Steering Committee moved forward with
a project related to these activities. Since a major
theme of survivors’ responses at the forums was a
lack of individualized psychosocial support, the group
decided to focus on a project that addressed that
need. Consequently, the Patient & Family Resources
Implementation Group of the Iowa Consortium for
Comprehensive Cancer Control (ICCCC) applied for
a two year Implementation Grant from the Lance
Armstrong Foundation.
The project, Iowa Cancer MAPS (Mentors Assisting
& Preparing Survivors), will pilot an individualized
peer mentorship program for cancer survivors and/or
their loved ones who are searching for psychosocial
support that fits their specific needs. This program will
match these survivors with mentors—“veteran” cancer
survivors—who have been trained to provide emotional,
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educational, and social support. This patient navigation
program will empower both mentors and mentees
to take an active role in their cancer treatment and
survivorship by helping each to “Live Strong” and walk
together along the cancer journey. This project’s many
partners include the American Cancer Society, Gilda’s
Club Quad Cities, the Iowa Department of Public Health
- Comprehensive Cancer Control Program, the NCI
Cancer Information Service, the Leukemia & Lymphoma
Society, cancer treatment centers and cancer survivors.
Iowa Cancer MAPS is truly a statewide effort that will
help cancer survivors navigate their way through the
unfamiliar terrain of life after cancer. The letter of intent
for this project is included in this report in Appendix D.
In October 2007, the LAF notified Gilda’s Club Quad
Cities (the fiscal agent), the MAPS project was approved
and funded for a 2 year implementation grant.
Survivorship Services in Iowa
To assess and update cancer services/resources available
in Iowa, the project team developed an online survey.
Several 14C members personally contacted and asked 15
American College of Surgeons (ACoS)/cancer hospitals
to complete the survey online. Nine of the 15 eligible
hospitals completed the survey. Appendix E details their
responses.
Appendix F is a list of selected resources used for this
report.
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APPENDIX A — INVITATION
Iowans Living Beyond Cancer:
Thriving Through Survivorship
You are cordially invited to join the discussion, share your views and
make an impact on the quality of life for Iowa’s cancer survivors.
January 25, 2007
3:00-4:30 p.m.
Please plan to attend at the location most convenient for you listed below.
Sponsored by the Iowa Department of Public Health – Comprehensive Cancer Control Program
This meeting is made possible by the Lance Armstrong Foundation.
...working together to conquer cancer.
Council Bluffs – Iowa Western Community College, 2700 College Rd., Looft Hall, #024
Creston – Southwestern Community College, 1501 W. Townline Rd., Room #107
Davenport – Eastern Iowa Community College, 326 W. 3rd St., Kahl Educ. Center, Room #300
Des Moines – Lucas State Office Building, 321 E. 12th St. in ICN Room, 6th Floor
Dubuque – Carnegie-Stout Public Library, 360 W. 11th St. – as Reference Desk for directions
Fort Dodge – Trinity Regional Hospital, 802 Kenyon Rd., ICN Room
Iowa City – Iowa City Public Library, 123 S. Linn St., Meeting Room D
Mason City – North Iowa Community College, 500 College Dr., Room #106
Ottumwa – Ottumwa Regional Health Center, 1003 Pennsylvania Ave., Conference Room A
Sioux City – Trospar-Hoyt County Services Bldg., 822 Douglas St., ICN Room, 4th Floor
Waterloo – Hawkeye Community College, 1501 E. Orange Rd., Room #110
Please RSVP to Sarah Kitchell, Partnership Program Coordinator 319-356-4285 or
[email protected] by January 18, 2007 with your name, address, email address,
telephone number and the ICN location you plan to attend.
We HOPE to see you there!
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APPENDIX B
FORUM RESPONSES
Education
Audience: Cancer survivors, caregivers, health care providers, decision makers, general public
# of votes
Comment Categories
• Type of information: Side effects of treatment............................................................................. 27
Fatigue
Sexuality
Managing side effects
Risks/benefits of different treatments e.g., side effects, Quality of Life (QoL)
Nutrition
• Quality of Information................................................................................................................. 24
Age-appropriate
Gender-appropriate (men’s information)
Consistency
Understandable
Individualized
Amount—often overwhelming, need filter
When information is received, timing
Accuracy
Delivery: sensitivity of physicians, cultural competence
• Type of information: Follow-up care, late effects, recurrence...................................................... 17
• Type of Information: Benefits, insurance, etc............................................................................... 11
FMLA policies at workplace
COBRA, other insurance coverage
What services insurance covers—complementary services, prosthesis
Disability benefits
• Type of Information: Coping....................................................................................................... 11
Coping, spirituality
How to talk to children
Role as a survivor: everything has changed
Caregivers
• Type of Information: Treatment, clinical..................................................................................... 11
Current research/participation in clinical trials
Prevention/Risk to self, children
Complementary therapies
• Type of Information: Knowledge of existing resources in community.......................................... 10
Support groups
• Access to Information................................................................................................................... 8
Internet
Small towns lack of information, lack of access to cancer resource centers and to Internet
• Knowledge/what questions to ask................................................................................................. 7
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Services
Audience: Cancer survivors, caregivers, friends/family
# of votes
Comment Categories
• Psychosocial Support..................................................................................................................... 27
Support groups for patients
Support groups for families, caregivers
Spiritual support (church groups)
One on one mentorship with others with similar treatment/diagnosis
Support for rarer cancers
Lack of young adult support systems
Men’s cancer groups
• Care Coordination & Planning..................................................................................................... 17
(treatment coordination, navigation, case management)
Follow up care with patient & primary care provider
Navigator during treatment, transition
• “Quality of Life” services.............................................................................................................. 12
Exercise, nutrition, lymphedema care, complementary therapy (yoga, massage)
Camps
Discounts at local restaurants
Financial counseling
Child care
Gyms, rehabilitation
Survivor reunions
“After care” for recovering patients (errands, home health services)
• Transportation................................................................................................................................ 6
Road to Recovery volunteers
• Pain Management, managing side effects........................................................................................ 4
• Screening/Preventive Services for Survivors..................................................................................... 2
Survivorship care clinic
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Advocacy/Empowerment
Audience: Cancer survivors, friends/family/caregivers, decision-makers, government officials, insurance
companies, workplaces/employers
Comment Categories
# of votes
• Insurance......................................................................................................................................55
Concern over future insurability, loss of insurance
Out of pocket expenses/ high deductibles, poor reimbursement
Maze navigation: paperwork, difficult forms, replication
Coverage for complementary services, prostheses, lodging, gas
Cost of medications (not covered, too high)
Stress/anxiety as a result
Obtaining life insurance
Education to insurance companies about effectiveness of covering preventive services
• Access to treatment, screening/preventive care...............................................................................17
Coverage for uninsured
Wait times, scheduling
Physical space (parking)
• Workforce......................................................................................................................................18
Loss of benefits or income due to cancer treatment
Stigma/discrimination by employer or colleagues
Added stress during treatment
Accommodation at work during treatment
• Empowering Survivors...................................................................................................................28
Identity
Survivorship acceptance/affirmation
Informed decision-making
Advocates/family assistance
• Public Understanding/Other...........................................................................................................14
Discrimination/stigma/curiosity
Smoke-free environments/other risks
Disability assistance
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APPENDIX C
STEERING COMMITTEE RESPONSES AND DRAFT STRATEGIES
FOR THE IOWA CANCER SURVIVORSHIP PLAN
Education/Awareness: Type, Quality, Access
In the forums, survivors said they needed:
• Information about side effects of treatment
–Fatigue, sexuality, management of side effects, nutrition
• Information quality
– Age, gender, culturally appropriate materials; consistent, accurate & understandable; manageable amount and at an appropriate time
• Information about follow-up care, late effects, and recurrence
• Information about insurance/workplace benefits and disability
• Information about coping, spirituality, family interaction
• Information about treatment
• Information about resources in their communities
• Access to information, especially in smaller towns
• Knowing what questions to ask
Steering Committee Responses: Additional items of importance
• Appropriate timing of information is important
–Receiving the bulk of the information up front is not always appropriate. People may feel overwhelmed.
–Need information at different points along care journey
–Need information in different ways/formats (learning styles)
–Need information repeated
• Information received at appropriate times may ensure patient is more receptive, especially with information pertaining to:
–Fertility
–Genetic Tests
–Clinical trials—availability and accessibility
• Information may be more accessible if delivered by a mentor/peer
–Social interaction, nurturing/supportive, “partner in the process,” someone who has walked a similar journey, friendship/connections
• Attitude/outlook is important to survival; understanding that it is okay to throw yourself a “pity party” once in awhile—it is better to deal with emotions and work through them than deny them. Also, there is a lot of value to surrounding oneself with positive people.
• There is some confusion about “navigators”—it is a term used by many different people and there are no uniform criteria or consistency of follow-up, etc.
• Patients don’t know what they don’t know—knowing what questions to ask is difficult
• Coordinated referral to support/auxiliary services is not consistent within and among treatment facilities. Some patients are not “plugged into” all referral services such as nutrition services and/
or support groups.
• Caregivers are often left out of the equation—they are sometimes the “information brokers” and have a better perspective on what the patient needs. Often the patient is too overwhelmed or affected by treatment to know what their informational needs are. This can be true for other loved ones, such as a spouse and/or adult children (who can often live out-of-state).
• Patients can be frightened of discussions of palliative care since that can signal “hospice”or
“giving up” to them. Working on definition/understanding of palliative care so that people under-
stand it addresses QoL and comfort during and after treatment.
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STRATEGIES: Education/Awareness
The overarching theme for this section was “information for the patient on their own terms.” This
encourages a patient-centered approach where the patient is in charge.
Strategy 1: Information “inventory” that monitors the patient’s needs and tracks their progress.
Identifies areas of need and allows for individualized information/education.
Additional informataion: Helpful to discuss these needs outside a clinical setting; done by someone
who is not a healthcare provider, but is trained and/or certified (volunteer/mentor/employee?). Can
also be done by a care coordinator, nurse coordinator, and/or navigator.
Strategy 2: A “distress thermometer” to determine patient’s psychosocial needs and identify what
resources/information are necessary and connect to resources as appropriate. Adapt to needs, conduct
periodically in order to reconnect. Adapt for caregivers, loved ones and family. [could be coupled
with #1]
Additional information: A tool was developed by National Comprehensive Cancer Network (NCCN)
in cooperation with the ACS. Find the tool at: http://www.nccn.org/patients/patient_gls/_english/
_distress/contents.asp
Strategy 3: Mentor/additional level of support that offer another partner in care (volunteer trained/
certified?). Could also be navigator model for consistency and care coordination.
Strategy 4: Orientation sessions, classes, workshops for newly diagnosed. “Survivorship University.”
It could be modeled on diabetes classes (teaching about side effects, dealing with your cancer).
Additional information: There are currently symptom management classes offered in Des Moines,
and survivorship classes are being planned at the University of Iowa, Holden Comprehensive Cancer
Center.
Strategy 5: Coordinated, consistent referral to services/resources within and outside a patient’s
treatment facility.
Strategy 6: Information packets appropriate for caregivers, adult children, spouses.
Strategy 7: Information sharing that gives information to the patient at different times throughout
treatment.
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Services/Resources: Psychosocial Support,
Coordination of Care, Quality of Life/Side effects
In forums, survivors said they needed:
• Psychosocial support
–Support groups, particularly for men, young adults, and rarer cancers, spiritual support,
mentorship
• Care coordination & planning
–Follow-up care, navigation of treatment
• Services to improve quality of life and managing side effects
–Exercise, nutrition, lymphedema care, complementary therapies, camps, discounts at stores, financial counseling, child care, “after care,” reunions, physical rehabilitation
• Access to transportation
• Pain management services
• Screening/Preventive services
–Survivorship clinic
Steering Committee Responses: Additional items of importance
•
•
•
•
•
•
Palliative Care services are important; help patients realize that they are not only hospice services, but can improve QoL
Connect patients to good resources and giving credible/accurate/up-to-date information to
access them
Offer caregiver resources, respite opportunities
Offer a family component—counseling about cancer risk, prevention
Help people “Live Strong” from diagnosis on—helping them realize it is important to do “normal”
things like hobbies and spending time with friends. Discouraging a “cancer-centric” world view,
so cancer does not take over their life
Offer post-treatment resources—especially important—when there is finally space and “emotional
energy” to deal with some of the fears and finally process information. Offering services at this time would be effective and helpful.
STRATEGIES: Services/Resources
The overarching theme for this section was connecting people to existing resources—being careful not
to duplicate existing services, but to better coordinate services and connect people to those resources.
Strategy 1: Connect survivors to existing services; expand an up-to-date list/directory of resources on
the Web site.
Strategy 2: Offer an exercise/rehabilitation program similar to cardiac rehabilitation for cancer
survivors which would provide wellness, nutrition, and physical activity counseling.
Additional Information: Gilda’s Club currently has an exercise room in their facility with weight
machines, trainers, and other counseling available. This is popular because many people do not feel
comfortable going to the gym, do not have time, and do not know what to do to exercise.
Strategy 3: Create a one-page summary on cancer (specific to each type of cancer) that would list the
five most important points and additional resources.
Strategy 4: Encourage development of notebook/template of information/resources given to cancer
patients during and after treatment. Include information and referrals to services in their community.
Collect best practices from treatment facilities doing similar projects to create a template for other
facilities.
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Additional Information: Access online and offline resources, tie-in with inventory of informational
needs referenced earlier. Keep information and referrals consistent. Use distress scale as well? Include
information about post-treatment resources.
Strategy 5: Offer exercise groups, social support as well as prevention and wellness education for
cancer survivors. The Wellness Community is one possible model to follow.
Additional information: There is a walking group program in Ames where participants’ physical
changes are monitored (blood pressure, etc).
Strategy 6: Offer an “exit interview” for cancer survivors as they leave treatment. Sharing next steps,
preparing for post-treatment, assessing of needs, connecting to resources and addressing concerns/
anxiety.
• 16• •
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Advocacy/Empowerment: Insurance issues, Access to treatment,
Workplace Issues, Empowerment, Public Understanding
In forums, survivors said they needed:
• Assistance with insurance issues
–Future insurability, out-of-pocket expenses/high deductible, amount of paperwork, replicated forms, confusing forms, coverage for services such as lodging and gas, cost of medications too
high/not covered, stress & anxiety due to insurance concerns, inability to get life insurance,
difficulty getting preventive services
• Access to treatment & screening/preventive care
–Coverage for uninsured, wait times/scheduling, space
• Assistance with issues in the workplace
–Loss of benefits, stigma/discrimination, added stress, accommodation during treatment
• Empowerment as cancer survivors
–Identify, accepting/affirming survivorship, informed decision-making, advocates/family assistance
• Information for the public and to create a better environment
–Addressing public stigma and/or curiosity, smoke-free environments, disability assistance/
accommodation
Steering Committee Responses: Additional items of importance
•
•
•
•
•
Physician/healthcare provider interaction with patient is important because the health care provider
is working for them. Patients need to know they can ask for a second opinion or request a new
provider when there is a difference in personality. Treatment and survival are most important—the
patient and the provider are working together in a team (informed decision-making).
Patient advocates can be caregivers, friends, family, or the patient themselves. Help train/teach advocates to walk alongside patients on their journey.
Patient Assistance programs exist, but connecting patients to them is often difficult and navigating
the requirements/procedures can be cumbersome.
The elderly often have trouble navigating insurance benefits/coverage, especially knowing how to find answers. Insurance is very complex and patients often can get derailed. It feels like a “battle” to get past unclear or confusing messages.
Financial planning/orientation to financial issues, important as they are, may not have been
addressed or are only addressed during and after treatment.
STRATEGIES: Advocacy/Empowerment
The overarching theme for this section was empowering the patient; helping them find their voice and
realize they can be in charge to advocate to improve their quality of life or the lives of others.
Strategy 1: Encourage “cancer teams” at insurance companies and best practices for assisting cancer
patients and families. Educate insurance companies to understand barriers/difficulties cancer patients
face. One potential model could be Principal Financial.
Strategy 2: Offer financial counseling for cancer survivors. Many have drained their life savings and
need to know what to do for retirement, college savings, children, etc.
Strategy 3: Encourage the “CEO Gold Standard” for employers for cancer care. Work with large
employers/health plans to improve cancer experience. Potential models include the CEO Roundtable
by C-Change and Wellmark/Farm Bureau colorectal cancer screening.
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Strategy 4: Encourage insurance companies and large employers to promote wellness and cancer
prevention in the workplace.
Strategy 5: Participate in forums with the Health Access Partnership, promoted by ACS in the
initiative announced by John R. Seffrin, CEO of ACS last spring.
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APPENDIX D:
LETTER OF INTENT FOR IOWA CANCER MAPS
Organization: Gilda’s Club of the Quad Cities
Project Title: Iowa Cancer MAPS (Mentors Assisting & Preparing Survivors)
Grant Type: Implementation
Subject Area: Emotional Support, Practical Issues of Survivorship
NARRATIVE: The Iowa Consortium for Comprehensive Cancer Control (ICCCC) was formed in
2001 to coordinate the efforts of those fighting cancer. The Consortium consists of 100 individuals
representing 50 agencies and organizations across Iowa. In 2006, the ICCCC’s Patient & Family
Resources Implementation Group partnered with the Iowa Department of Public Health to develop
the Iowa Cancer Network for Follow-up Care & Support, funded by a Lance Armstrong Foundation
planning grant. As part of that project, the Implementation Group organized a series of forums in
11 cities throughout Iowa to hear from cancer survivors, caregivers, and health care professionals
regarding what survivors need to live a full and healthy life. These forums led to the development
of a steering committee and an Iowa Survivorship Plan. A common theme discovered was cancer
survivors’ need for emotional support through a direct connection with another survivor with
similarities such as age, gender, cancer diagnosis and treatment. Cancer survivors emphasized the
importance of being matched with another survivor. To address this unmet need in Iowa, the Patient
& Family Resources Implementation Group and its fiscal agent, Gilda’s Club Quad Cities, propose to
develop the Iowa Cancer MAPS (Mentors Assisting & Preparing Survivors) Project with a two-year
Implementation Grant from the LAF.
TARGET COMMUNITY: According to the Iowa Cancer Registry, over half of those diagnosed
with cancer survive it. With longer survival rates, it is imperative to develop programs and services
that enhance the quality of life for those faced with a cancer diagnosis and their loved ones. This
project aims to connect cancer survivors and caregivers with one another to assist them in coping with
the emotional and practical issues in learning to live with cancer. The Iowa Cancer MAPS Project
will target survivors and family members who have identified the need to be matched with a mentor
according to their individual requirements.
NEED: Cancer survivors in Iowa face unique challenges. As residents of a rural state, survivors have
difficulty connecting with other cancer survivors who face similar issues. In the Survivorship Forums
survivors repeatedly spoke about the need to be connected with other survivors as a system of support
as they navigate their cancer journey. Cancer survivors acknowledged that there are support groups
available, but that the existing groups do not always provide the type of support they require or are
not accessible to them due to where they live and/or receive treatment. One young man voiced his
concern that all support groups he attended seemed to target older female breast cancer survivors.
He was unable to find someone with a similar diagnosis, similar age, and with issues, questions, and
challenges that matched his and therefore was unable to find the support he needed. This need is
echoed in the National Action Plan for Cancer Survivorship and the President’s Cancer Panel 20032004 Report, Living Beyond Cancer, which emphasizes the value of being matched with a “cancer
guide” who can “help collect and explain information and assist the patient and family in coping with
the diagnosis and undertaking initial steps in the care process.”
• 19• •
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PROGRAM DESIGN: The Iowa Cancer MAPS Project will address both emotional and practical issues
of survivorship. The project team will create a statewide network of cancer survivor mentors not to
be limited by geographic location or other specific circumstances. Mentors will be recruited, trained,
and supported by the project team. The mentor program will then be promoted to cancer patients and
families with the assistance of ICCCC partnering organizations and cancer centers. This project will
take place over two years with development of training and recruitment materials in year one and a
pilot of the mentoring project in two communities in year two.
Partners: From the outset, cancer survivors have guided this project and will provide assistance
throughout its implementation. This project is based upon input from cancer survivors collected
through the Iowa Cancer Network for Follow-up Care and Support, a project funded by the Lance
Armstrong Foundation in 2006. The network of cancer stakeholders created by that project will assist
with the current proposal. The Patient & Family Resources Implementation Group (IG) of the ICCCC
will implement the project. The IG has been successful because of collaborative member relationships
and resources. The IG includes representatives from Gilda’s Club, the American Cancer Society, the
Iowa Department of Public Health, local Cancer Centers and Cancer Resource Centers, the Leukemia
and Lymphoma Society, and the National Cancer Institute. Gilda’s Club Quad Cities will act as the
fiscal agent for the project. In 2003, Gilda’s Club was an LAF Community Program grant recipient,
and also partnered with the LAF in 2006 to offer a Grassroots Advocacy Training program for cancer
survivors living in the Quad City area. Gilda’s Club Quad Cities has been in operation since 1998,
complies with annual financial audits, and successfully manages an annual operating budget of almost
$400,000.
GOAL: Create a statewide mentoring program for cancer survivors in Iowa that matches survivors
and caregivers to others with a similar diagnosis, gender, treatment plan, and/or other characteristics
and that addresses their need for individualized assistance and support.
• Objective 1: Identify and assess existing mentorship programs and contact partners at cancer treatment facilities to establish potential recruitment sites. (Year 1)
Activities: Contact existing programs and review materials.
Outcomes: Existing materials identified and training curriculum developed.
• Objective 2: Develop mentorship training program for Cancer MAPS (Year 1).
Activities: Develop training materials, curriculum, conduct training, and gain input from the steering committee of the Iowa Cancer Network for Follow-up Care and Support.
Outcomes: Training program developed by the end of year one.
• Objective 3: Train up to 50 mentors in two communities to pilot the project (Year 1 or 2)
Activities: Identify pilot sites, recruit and train mentors.
Outcomes: Up to 50 mentors will be recruited and trained. Training materials and curriculum will be tested and evaluated for effectiveness with this pilot group.
• Objective 4: Pair up to 50 mentors with program participants across Iowa (Year 2)
Activities: Develop capacity to match and track mentors and program participants, develop recruitment plan for program participants, and develop follow up mechanism for participants.
Outcomes: System developed to match and track participants; up to 50 participants recruited, and follow-up done on issues and challenges of mentors/participants with a mechanism in place to address potential issues and challenges.
• Objective 5: Increase the capacity of the ICCCC’s web portal (www.canceriowa.org) to serve as a match point database for mentors/participants.
Activities: Increase existing web portal capacity to hold data, enable web portal to have password protected database.
Outcomes: The web portal will be used by 25% of mentors and mentees and partner hospitals will link to it.
• 20• •
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APPENDIX E
AMERICAN COLLEGE OF SURGEONS SURVEY
AVAILABILITY OF SERVICES
TO IOWA CANCER SURVIVORS
Demographic information of survey respondents
A) Name of cancer treatment facility and city:
a.) Holden Comprehensive Cancer Center – Iowa City, IA
b.) Mercy Iowa City – Iowa City, IA
c.) John Stoddard Cancer Center – Des Moines, IA
d.) Jennie Edmundson Cancer Center - Council Bluffs, IA
e.) Alegent Health Cancer Center – Council Bluffs, IA
f.) Mercy Medical Center - Sioux City, IA
g.) Abben Cancer Center – Spencer, IA
h.) Covenant Cancer Treatment Center – Waterloo, IA
i.) Mercy Cancer Center – Mason City, IA
60% of the facilities surveyed responded and provided a Web site for their location.
EDUCATION SERVICES:
We offer
this currently
We do
not offer
this
We plan to
offer this
within 12 mos.
We refer
for this
100%** 0%
0%
11%
Wellness/prevention
education
89%
11%
0%
0%
Clinical trials
education
100%
0%
0%
0%
Physical activity/
nutrition education
100%
0%
0%
11%
Caregiver classes
22%
56%
11%
22%
Side effects education
89%
11%
0%
0%
Late effects education
75%
25%
0%
0%
Fatigue management
78%
22%
0%
0%
Insurance education
100%
0%
0%
11%
Patient library/
resource center
100%
0%
0%
0%
Free cancer screenings
88%
0%
12%
0%
Site-specific cancer education
(i.e. breast, lung, cervix)
Other (see information below)
** Facilities were able to select more than one response per question.
• 21• •
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1.) We plan to offer survivorship classes in the next 12 months. The support groups we administer
have an educational component. We also offer child life programs; long term follow-up; Smoking
Teens prevention program; Bone Marrow Transplant reunion; bereavement program; the Caring
Clown program; fatigue awareness; the Patient Voice Writing program; monthly cancer prevention
tips; Sun Awareness program for Migrant Farm Children; weight control programs; Mindfulness
Based Stress Reduction; UIHC Health for Your Lifetime community seminar series; NCI/CIS/
ICCCC Partnership Program Coordinator; Psychosocial Oncology Conference for health professional; Chemotherapy For Nurses class; Scofield Advanced Oncology Nursing Conference; weekly
palliative care conferences for health professionals; Cancer Matters patient binder; around 50
health fairs annually throughout the state of Iowa; Clinical Trials staff education event; and the
ICCCC web portal.
2.) Cancer Help computer (NCI information) is available on the adult oncology inpatient unit for
patient and family use.
3.) Head and Neck screening is done by Dr. Hart and skin screenings by dermatologist Dr. Sand.
EDUCATION SERVICES are referred to:
1.) Caregiver referrals vary – can be to local group, agency, church, etc.
2.) We refer within the hospital for many of these services--Examples: 1) We refer patients to our
Health & Fitness Dept. and to our oncology dietician for physical activity/ nutrition education. 2)
We refer patients to the oncology social worker for insurance education and also provide some of
the education in our support services.
3.) Nurse and Family Resource Center does education.
4.) We have free screening at different times of the year and sometimes they are only offered in one
of our Omaha hospitals.
5.) Women’s Resource Center at Spencer Hospital.
• 22• •
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SUPPORT SERVICES:
We offer
this currently
We do
not offer
this
We plan to
offer this
within 12 mos.
78%**
0%
22%
11%
Transportation assistance
88%
0%
0%
11%
Lodging assistance
33%
0%
44%
33%
Cancer Survivor’s Day
56%
0%
44%
0%
American Cancer Society
services (I Can Cope; Look
Good, Feel Better; Man to Man;
Reach to Recovery; Road to
Recovery)
100%
0%
0%
0%
Support groups for patients
89%
0%
0%
11%
Support groups for survivors
56%
0%
33%
11%
Support groups for families/caregivers
67%
0%
33%
11%
Support groups for children
11%
0%
67%
22%
Support groups for young adults
22%
0%
67%
22%
Financial assistance
We refer
for this
Other (see information below)
** Facilities were able to select more than one response per question.
1.) We provide financial counseling; yoga for breast cancer patients; healing touch; Mindfulness
Based Stress Reduction; hospital teacher for hospitalized children with cancer; financial aid for
pediatric cancer patients only; an ACS Hope Lodge that will open up in the next 12 months; Team
Survivor, a LAF program; participant in the Iowa Cancer MAPS program; an ACS Navigator that is
expected to start in December 2007; and provide sperm banking services.
2.) Our support group for survivors is a monthly social event, not a formal group. Our children/
teenage groups are open to our patient/families, but offered in the Omaha office. Our ACS services
are starting again in November, but do not offer Man to Man or Road to Recovery in this area.
However, we refer men to Wings of Hope here in Council Bluffs for Prostate group or to our Man
to Man Prostate Alegent group on Bergan Mercy Campus of Alegent in Omaha, Nebraska.
3.) US Too (prostate support group) we refer to Allen Hospital.
• 23• •
••••••••••••••••••••••••••••••••••••
SUPPORT SERVICES are referred to:
1.) We typically refer the patients/survivors to support services offered by national organizations,
including the The Ulman Cancer Fund for Young Adults.
2.) Refer children to University of Iowa Hopitals and Clinics (UIHC). For teenagers we could refer
to Web-based resources, such as www.cancerreallysucks.org. based in Cedar Rapids.
3.) We refer patients to the American Cancer Society for many services such as lodging assistance
and rides to/from appointments/treatments. We offer some financial assistance and also refer to
organizations as needed. We refer to Blank Children’s Hospital and the Child Life Therapy Dept.
for support services for children.
4.) American Cancer Society Wings of Hope.
5.) ACS will at times assist with lodging. The Omaha Nebraska Survivors Day Celebration will
include any Council Bluffs, Iowa survivors if they want to participate there.
6.) American Cancer Society - Sioux City Navigator Program - ACS - Sioux City and June E. Nylen
Cancer Center - Sioux City.
• 24• •
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COUNSELING/THERAPY SERVICES:
We offer
this currently
We do
not offer
this
We plan to
offer this
within 12 mos.
We refer
for this
100%**
0% 0%
11%
Spiritual counseling
89%
0%
11% 11%
Grief/bereavement counseling
89%
0%
11%
11%
Physical therapy
89%
0%
0%
22%
Speech therapy
78%
0%
11%
22%
Occupational therapy
78%
0%
11%
22%
Reproductive/sexuality
counseling
56%
0%
33%
22%
Nutrition/diet counseling 100%
0%
0%
0%
Financial counseling
78%
11%
11%
0%
Genetic testing/counseling
Career counseling/job search
assistance
67%
0%
0%
11%
22%
56%
11%
33%
Music/art therapy 11%
0%
78%
11%
School reentry program
11%
0%
67%
22%
Emotional counseling
Other (see information below)
** Facilities were able to select more than one response per question.
1.) Pet Therapy offered at Mercy by local volunteers who have Pet Therapy credentials.
2.) We refer within the hospital for some of the things listed.
COUNSELING/THERAPY SERVICES are referred to:
1.) We refer to www.cancerandcareers.org.
2.) Physician/patient determined referrals for reproductive/sexuality counseling. UIHC for genetic
testing/counseling. We do not have a music/art therapy program, but have had presentations on
both topics at our support groups. Career counseling is provided through local agencies. School
re-entry assistance with patient’s school.
3.) We have a clinical psychologist that provides many of the services on the list.
4.) Wings of Hope.
5.) Spencer Hospital Rehabilitation Services Season’s Center / Spencer Psychiatry NW IA
Counseling Associates.
6.) Genetic counseling is referred to UHIC, Iowa City, Iowa. Reproductive and sexuality
counseling referred to OB-GYN and/or urology offices.
• 25• •
••••••••••••••••••••••••••••••••••••
OTHER SERVICES:
We offer
this currently
We do
not offer
this
We plan to
offer this
within 12 mos.
We refer
for this
Smoking cessation
67%**
11%
11%
11%
Pain management
100%
0%
0%
0%
Palliative care
75%
0%
25%
0%
Complementary/Alternative
Services (Acupuncture, massage
therapy, homeopathic care, yoga
33%
11%
33%
22%
Chiropractic care
22%
11% 67% 0% Disability management 25%
12.5%
63%
0%
Side effect management
100%
0%
0%
0%
Lymphedema therapy
78% 0%
11%
11% Postmastectomy care
85%
0%
0%
13%
Postostomy care 89%
0%
0%
11%
Home care
78%
0%
11%
11%
Hospice care
67% 0%
22%
22%
Prosthesis fittings/assistance
75%
0%
13%
25%
Other (see information below)
** Facilities were able to select more than one response per question.
OTHER SERVICES are referred to:
1.) We refer patients to hospice; typically Iowa City Hospice, but also any hospice organization in
the patients’ hometown.
2.) We also refer to other facilities in the area as needed.
3.) Some of the Complementary/Alternative Services are offered in our Omaha Facilities – Yoga, Tai
Chi, Lebed Method, and massage are all available to our cancer patients.
4.) Spencer Hospital Physical Therapy Department. Multiple durable medical equipment companies
in the area. Multiple HHC/Hospice agencies in the area.
5.) American Cancer Society program for smoking cessation or personal physician. Location in
Clear Lake that does complementary therapy.
• 26• •
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APPENDIX F:
SELECTED RESOURCES
Cancer survivorship research and other resources at the National Cancer Institute’s Division of Cancer
Control and Population Sciences: http://cancercontrol.cancer.gov/ocs/index.html.
The National Coalition for Cancer Survivorship is the oldest survivor-led cancer advocacy
organization in the country and a highly respected voice at the federal level, advocating for quality
cancer care for all Americans and empowering cancer survivors: http://canceradvocacy.org/.
The Lance Armstrong Foundation unites people to fight cancer, offering information and services to
help cancer survivors live life on their own terms, taking aim at the gaps between what is known and
what is done in the cancer fight, and engaging people to make cancer a national priority: http://www.
livestrong.org.
Hewitt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition.
Washington, DC, The National Academies Press, 2005.
Centers for Disease Control and Prevention and the Lance Armstrong Foundation: A National Action
Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta, GA, Centers for Disease
Control and Prevention, 2004.
President’s Cancer Panel 2003/2004 Annual Report: Living Beyond Cancer: Finding a New Balance.
Bethesda, MD, National Cancer Institute, 2004.
Hewitt M, Weiner SL, Simone JV: Childhood Cancer Survivorship: Improving Care and Quality of
Life. Washington, DC, The National Academies Press, 2003.
• 27• •
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This publication is made possible by a Community Program grant from the Lance Armstrong Foundation, which
seeks to inspire and empower people affected by cancer.
The Lance Armstrong Foundation (LAF) inspires and empowers people affected by cancer. We help people with
cancer focus on living; we believe that dignity is strength, knowledge is power and attitude is everything. From the
moment of diagnosis, the LAF provides the practical information and tools people with cancer need to live life on
their own terms. The LAF serves its mission through advocacy, public health and research. Founded in 1997 by
cancer survivor and champion cyclist Lance Armstrong, the LAF is located in Austin, Texas. For more information,
visit livestrong.org.
December 2007
• 28• •
Iowa Department of Public Health
Promoting and protecting the health of Iowans
Thomas Newton, MPP, REHS
Director, Iowa Department of Public Health
Chester J. Culver, Governor
Patty Judge, Lieutenant Governor