Transcript We are all cancer survivors

The Role and Objectives of
Patient Organizations Around
the World
A presentation by:
Mark Krueger, MPH
27 March 2010
We are all cancer survivors
• New words are being used to describe what once
were cancer “victims”:
• “Cancer survivors”
• Advocates say a cancer patient is a “cancer survivor”
from diagnosis for the rest of life
• All of us affected by cancer in one way or another patients, friends, family, health professionals - are
“cancer survivors”
Cancer survivorship movement
• “Empowering” the cancer survivor
• The advocacy skill set
• Cancer-related advocacy
Elizabeth Clark, PhD
Nancy Stovall
The informed and engaged patient
The roles of cancer patient groups
Support
Education
Advocacy
Research
What cancer groups are doing
• Nationwide cancer support and advocacy
organization
• “Dress Down Day” for myeloma awareness
and fund raising
• “Mile for Myeloma” and “Run or Walk for
Myeloma UK” public awareness events
• US chapter-based research and advocacy
group for all hematologic cancers
• New free booklet “Understanding Drug
Therapy and Managing Side Effects”
• Network of multiple myeloma
patient groups in Europe
• Support, education and advocacy
• Connected to policy makers
Polish leadership is evident
Polish Myeloma Patient Help
Association: Setting High Standards
Association governance
Growing
membership
IV Congress
Cooperation
between
board and staff
Advocacy
Connections to
scientists
and researchers
Meeting the challenges of the future
Potential future projects
• Use social media (FaceBook, Twitter, etc.) for education
• Use Skype to connect with other chapters and groups
• Translate existing materials from other organizations (i.e. The
Leukemia & Lymphoma Society, etc.)
• Create cancer patient blogs for leukemia, lymphoma and
myeloma
• Begin annual “March for Research” event
Changing external environment
Pressures are increasing and affect what cancer groups
can and must do:
• Increasing number of patients from better screening
• Growing use of health technology assessment (HTA)
• Decreasing budgets for cancer care and research
• Increasing barriers to access to treatment
Choices must be made - cancer groups must speak up
Patients are at the Heart of the
Global Movement
You are empowering
Thank you.