Putting Survivorship Recommendations Into Practice

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Putting Survivorship Recommendations into
Practice 2006 Michigan Cancer Consortium Annual
Meeting November 3, 2006
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LAF MISSION

• To inspire and empower people affected by cancer.
  LIVESTRONG.
• Together we have all been working to battle
  cancer and to support
• those living with cancer. The Lance Armstrong
  Foundation helps
• people affected by cancer focus on living. We
  believe unity is strength, knowledge is power,
  and attitude is everything. We invite others in
  cancer control to join us in our work to provide
  the practical
• information and tools cancer survivors need to
  live life on their own terms.

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OVERVIEW

• Introduction to LAFs Survivorship Programs that
  address the recommendation in the IOM Report,
  CDC/LAF Action Plan, and Presidents Cancer
  Panel.
• Working with community-based organizations
• Establishing national partnerships with
  like-minded organizations
• Investing in cancer survivorship research
• Making cancer survivorship a national priority
• Developing new resources that fill gaps for
  cancer survivors
• Activating the cancer survivorship community to
  take action

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GRANTS
Research Program LAF Research Program focuses on
supporting research that will lead to improving
the quality of life for cancer survivors.  We
encourage and support the efforts of both
established investigators and young investigators
in the early stages of their career.  Since
inception, the LAF has awarded nearly 17 million
in research grants. LIVESTRONG Survivorship
Centers of Excellence Network The LIVESTRONG
Survivorship Center of Excellence Network
advances the concept of survivorship through
collaboration between survivors centers at
NCI-designated Comprehensive Cancer Centers. 
Network members provide essential direct
survivorship services, address critical issues
such as research and new interventions in order
to provide the most effective survivorship care,
and collaborate across institutions and with
community-based centers to speed discovery and
translation.
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GRANTS
Community Program The Community Program
provides financial support and capacity-building
to community-centered initiatives that address
the physical, emotional and practical challenges
of cancer survivorship.  Since its inception in
2001, the LAF Community Program has awarded
nearly 5 million to non-profit organizations
across the country. Through its Community
Program, the LAF awards grants to community,
non-profit organizations to serve the needs of
people living with cancer as identified by the
priorities in their State Cancer Control
Plan. Developed for the public health community
by LAF and the Centers for Disease Control, the
National Action Plan for Cancer Survivorship
serves as a model for health organizations and
state coalitions to set priorities that will help
them understand and address the needs of cancer
survivors.
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NATIONAL PARTNERSHIPS
To help meet the needs of people living with
cancer, LAF National Partnerships offer
a coordinated, comprehensive approach to cancer
survivorship that is aligned with the priorities
established in the National Action Plan. Through
the program, the LAF identifies, evaluates and
forms long-term cooperative agreements with
national non-profit organizations, which leverage
the strengths and resources of both
organizations. 
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NATIONAL PARTNERSHIPS

• Current National Partnerships include
• American Alliance of Cancer Pain Initiatives
• The Education in Palliative and End of Life
  Care Project for Oncology
• through Northwestern Universitys Feinberg
  School of Medicine
• Education Network to Advance Cancer Clinical
  Trials
• Fertile Hope
• Intercultural Cancer Council 
• The Leukemia and Lymphoma Society
• National Conference of State Legislatures
• The Wellness Community

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LIVESTRONG YOUNG ADULT ALLIANCE
The Alliance is a coalition of organizations
committed to improving the survival rates and
quality of life for young adults with cancer
between the ages of 15 and 40. The Alliance was
formed with the knowledge that unity is strength
- working together we can raise awareness and
effect positive change for young adults with
cancer. The Alliance will promote research and
investigation of the problem, serving as a voice
for the issue and supporting effective
solutions.  In collaboration with the LAF, the
National Cancer Institute established the
Adolescent and Young Adult Oncology Progress
Review Group (PRG). The first public-private
partnership of its kind, the PRG is composed of
prominent members of the scientific, medical and
advocacy communities. Its purpose is to develop a
national agenda for adolescent/young adult
oncology. The Alliance will use data released by
the PRG to influence its activities. The PRG
Report is now available at http//planning.cancer.
gov/disease/AYAO_PRG_Report_2006_FINAL.pdf
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LIVESTRONG SURVEY

• LAF is currently conducting an anonymous survey
  of cancer survivors who have finished treatment.
  The survey will help LAF identify cancer
  survivors physical, emotional and practical
  challenges so that we may provide better tools
  and information.  The LIVESTRONG Survey will
  provide LAF and its partners with specific
  information about understudied issues such as
  access to services and barriers to care. LAF
  hopes to collect this valuable information from
  thousands of cancer survivors from diverse
  communities (2,500 to date).
• This survey follows an initial poll conducted by
  LAF in 2004. Items of interest from the poll
  that are being explored in greater detail
  include
• Nearly half (49) of respondents said their
  non-medical cancer needs
• were unmet.
• 78 did not seek out the services of a
  counselor, social worker,
• psychologist or psychiatrist as a result of
  having cancer.
• 54 of respondents have had to deal with
  chronic pain.

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LIVESTRONG SUMMIT
The inaugural LIVESTRONG Summit will be held on
October 27-29, 2006, in Austin, Texas. It is a
three-day event to organize, inspire and direct
the efforts of cancer survivors from across the
country to make cancer a national
priority. Through the LIVESTRONG Summit,
the LAF will lead a survivorship movement to
broaden awareness and impact the unmet physical,
emotional and practical needs of people living
with cancer.
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LIVESTRONG DAY
On Wednesday, May 17th, many helped Lance and
the LAF be a voice for change. Thousands of
people in more than 100 communities took part in
LIVESTRONG Day events across the country to raise
awareness of and bring attention to cancer
survivorship. Two participants from each state
were selected  to participate with Lance in
Washington, D.C.  They met with their elected
officials, participated in interactive advocacy
presentations and listened to guest speakers
discuss how to make an impact on Capitol Hill and
in their own communities.
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TOOLS MATERIALS
www.livestrong.org
Survivorship Notebook
Living After Cancer brochure series
LIVESTRONG SurvivorCare Program 1 [phone]
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LIVESTRONG SURVIVORCARE
Through a partnership between LAF, CancerCare,
Patient Advocate Foundation, and EmergingMed,
LIVESTRONG SurvivorCare offers assistance to all
cancer survivors, including the person diagnosed,
caregiver, family and friends through education,
qualified referrals and counseling services for
- Learning about more about cancer and
survivorship - Treatment options - New
treatments in development (clinical trials) -
How to pay for my treatment- Private insurance,
Medicare and Medicaid- Managing insurance
appeals and disability claims- Making sure I
have the coverage I need - Financial assistance
for transportation, child care and home
care- Managing debt crisis issues- Scholarships
for cancer survivors- Tips and tools to manage
the cancer experience- Tips and tools for the
caregiver- Job retention and dealing with
discrimination at work - Talking about cancer
with loved ones
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CONTACT US
Andy Miller Director of Survivorship
Programs andy.miller_at_laf.org 1 [phone]