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WHAT CHRONIC DISEASE ADVOCACY CAN OFFER
CANCER SURVIVORS!
Canadian Cancer Survivor Network Webinar
September 2015
Cancer a chronic illness?
• Cancer survival rates are improving
• Many patients must manage their illnesses on an ongoing
basis
2
• New / different challenges:
• Fragmented health care system / care continuum
• Navigating the health care system
• Coordination of multiple care providers and specialties
While there are still many cancers that strike quickly and metastasize or
have poor survival rates, for many, cancer is becoming a chronic
condition that requires ongoing treatment and support to deal with side
effects ranging from nausea, pain and low immunity to bone loss, heart
disease and arthritis.
- CCSN
Chronic disease advocates
• Gail Attara
• Gastrointestinal Society
• Shelagh Ross
• Canadian Congenital Heart Alliance
• Linda Wilhelm
• Canadian Arthritis Patient Alliance
3
Gail Attara, President & CEO
• GI Society provides information and advocates
regarding a wide array of gastrointestinal and liver
diseases and disorders
• Gail is the President of the Best Medicines Coalition and
Co-Founder of Advocacy Boot Camp
4
Shelagh Ross, Former Executive
Director
• Grass-roots volunteer-based organization for patients with
congenital heart disease (CHD) that focuses on raising
awareness of CHD, providing peer support and mentoring,
and advancing CHD-related research
• Shelagh helped found CCHA and has been actively involved
in various capacities, including President and Executive
Director
5
Linda Wilhelm, President
• Supporting patients to advocate for themselves and the
arthritis patient community by building links between them
and other organizations, researchers and governments
• Linda also participates in Health Canada expert advisory
panels, is on the Best Medicines Coalition’s board of
directors and is also a member of CIHR’s Drug Safety and
Effectiveness Network’s steering committee
6
Discussion
• Does the advocacy story change when dealing with
chronic disease?
7
Discussion
• How do you approach different elements along the
continuum of care?
8
Discussion
• How do you engage patients in advocacy for treatments?
• What elements do you emphasize or focus on in the
context of patient input submissions to the Canadian
Agency for Drugs and Technologies in Health (CADTH)?
9
Discussion
• How do you sustain momentum in your advocacy
campaigns?
• How do you generate patient engagement?
10
Advocacy
campaign
Discussion
• What are some of the challenges in moving your
advocacy efforts forward?
11
Discussion
• What is one of your great successes?
• What were some of the key success factors?
12
Discussion
• Do you have any recommendations for the cancer
advocacy community to help support survivors?
13
The fact is, 63 per cent of Canadian cancer patients
live longer than five years after diagnosis, and if a
cancer patient survives past one year, that number
rises to 81 per cent … This requires a huge shift in the
way we treat cancer patients. We need to make sure
that people are aware of this change, and that our
system adapts to meet the long-term needs of people
throughout their cancer journey.
- Jackie Manthorne, CCSN
14
QUESTIONS

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What chronic disease advocacy can offer cancer survivors - round table discussion

  • 1. WHAT CHRONIC DISEASE ADVOCACY CAN OFFER CANCER SURVIVORS! Canadian Cancer Survivor Network Webinar September 2015
  • 2. Cancer a chronic illness? • Cancer survival rates are improving • Many patients must manage their illnesses on an ongoing basis 2 • New / different challenges: • Fragmented health care system / care continuum • Navigating the health care system • Coordination of multiple care providers and specialties While there are still many cancers that strike quickly and metastasize or have poor survival rates, for many, cancer is becoming a chronic condition that requires ongoing treatment and support to deal with side effects ranging from nausea, pain and low immunity to bone loss, heart disease and arthritis. - CCSN
  • 3. Chronic disease advocates • Gail Attara • Gastrointestinal Society • Shelagh Ross • Canadian Congenital Heart Alliance • Linda Wilhelm • Canadian Arthritis Patient Alliance 3
  • 4. Gail Attara, President & CEO • GI Society provides information and advocates regarding a wide array of gastrointestinal and liver diseases and disorders • Gail is the President of the Best Medicines Coalition and Co-Founder of Advocacy Boot Camp 4
  • 5. Shelagh Ross, Former Executive Director • Grass-roots volunteer-based organization for patients with congenital heart disease (CHD) that focuses on raising awareness of CHD, providing peer support and mentoring, and advancing CHD-related research • Shelagh helped found CCHA and has been actively involved in various capacities, including President and Executive Director 5
  • 6. Linda Wilhelm, President • Supporting patients to advocate for themselves and the arthritis patient community by building links between them and other organizations, researchers and governments • Linda also participates in Health Canada expert advisory panels, is on the Best Medicines Coalition’s board of directors and is also a member of CIHR’s Drug Safety and Effectiveness Network’s steering committee 6
  • 7. Discussion • Does the advocacy story change when dealing with chronic disease? 7
  • 8. Discussion • How do you approach different elements along the continuum of care? 8
  • 9. Discussion • How do you engage patients in advocacy for treatments? • What elements do you emphasize or focus on in the context of patient input submissions to the Canadian Agency for Drugs and Technologies in Health (CADTH)? 9
  • 10. Discussion • How do you sustain momentum in your advocacy campaigns? • How do you generate patient engagement? 10 Advocacy campaign
  • 11. Discussion • What are some of the challenges in moving your advocacy efforts forward? 11
  • 12. Discussion • What is one of your great successes? • What were some of the key success factors? 12
  • 13. Discussion • Do you have any recommendations for the cancer advocacy community to help support survivors? 13 The fact is, 63 per cent of Canadian cancer patients live longer than five years after diagnosis, and if a cancer patient survives past one year, that number rises to 81 per cent … This requires a huge shift in the way we treat cancer patients. We need to make sure that people are aware of this change, and that our system adapts to meet the long-term needs of people throughout their cancer journey. - Jackie Manthorne, CCSN

Editor's Notes

  1. Quote from “Cancer becoming a chronic condition for Canadian patients”, June 24, 2014, online (CCSN): http://survivornet.ca/en/news/cancer_becoming_a_chronic_condition_for_canadian_patients
  2. [63%]: Canadian Cancer Society's Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2014. Canadian Cancer Society. 2014: 59. [81%]: Canadian Cancer Society's Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2014. Canadian Cancer Society. 2014: 61.