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 Elizabeth Clark, PhD Nancy Stovall “Empowering” the cancer survivor The advocacy skill set Cancer-related advocacy

The informed and engaged patient

The roles of cancer patient groups Support Education Advocacy Research

What cancer groups are doing 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 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

Polish leadership is evident

Polish Myeloma Patient Help Association: Setting High Standards IV Congress Association governance Growing membership Advocacy Connections to scientists and researchers Cooperation between board and staff

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.