Rare Cancers - How to Empower Patients & Advocacy Organizations through Collaboration
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The document discusses collaboration between patient advocacy organizations for rare cancers in Canada. It summarizes discussions from a panel on empowering patients which included representatives from Myeloma Canada, GIST Sarcoma Life Raft Group Canada, and the Canadian Organization for Rare Disorders. The panel addressed issues for rare cancers around definitions, impact vs attention and research, screening, access to specialists, regulatory challenges, treatment pathways, and opportunities for the rare cancers community to work together.
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Rare Cancers - How to Empower Patients & Advocacy Organizations through Collaboration
- 1. 1 How to Empower Patients and Advocacy Organizations through Collaboration Rare Cancers December 9, 2016
- 2. 2 Panelists Martine Elias Director of Access, Advocacy & Community Relations Myeloma Canada David Josephy President GIST Sarcoma Life Raft Group Canada Durhane Wong-Rieger President & CEO Canadian Organization for Rare Disorders (CORD)
- 3. 3 GIST Sarcoma Life Raft Group Canada Gastrointestinal Stromal Tumour: • a rare sarcoma • Several effective oral drugs (targeted TKIs) • LRGC is a registered charity • >125 members across Canada • Our Vision: To support activities resulting in a cure for GIST, bringing every Canadian affected by this rare cancer onto our Life Raft until we achieve that goal • Annual Day of Learning and occasional local patient gatherings
- 4. 4 OUR MISSION Myeloma Canada is the only national non- profit organization uniquely devoted to the Canadian myeloma community. Founded in 2005 by two myeloma patients, Myeloma Canada is a patient-driven, patient-focused grassroots organization, whose goals are to: Provide educational resources and support to patients, families and caregivers Increase awareness of the disease and its effects on the lives of patients and families Facilitate access to new therapies, treatment options and heath care resources Foster, support and fund Canadian Research efforts to improve patient outcomes and ultimately help find a cure for myeloma
- 5. 5 • Canadian Organization for Rare Disorders (CORD) — Network of 102 Patient Groups • Mission: Improve lives of all those affected by rare diseases • Mandate: Advance rare disease policy; improve screening, diagnose and access to clinical trials and treatment; develop patient group capacity; support research; collaborate • Durhane Wong-Rieger, PhD, President and CEO Ottawa, ON Rare Disease Day 2016 Parliament Hill
- 6. 6 What we will discuss • Introduction to rare cancers and key issues • Rare cancers, small but mighty patient groups! – Life Raft Group (gastrointestinal stromal tumors) – Myeloma Canada • Collaboration across patient organizations and lessons learned from abroad – Europe – Australia • Qs and As
- 7. 7 Definitions - What’s a Rare Cancer?
- 8. 8 One of the Challenges: Impact vs. Attention and Research – Australia Data 2015 Cancer Audit
- 9. 9 Screening – Diagnosis – Prevention
- 10. 10 Access to Specialists and Referrals
- 11. 11 Regulatory Challenges and Issues
- 12. 12 Health Technology Assessment Programs – Evaluation Opportunities and Challenges
- 13. 13 Treatment Pathways • Companion diagnostics • Clinical trials - access to the latest therapies • Off-label use and access • Reimbursement • Sequencing and treatment guidelines
- 14. 14 National and Provincial Rare Disease and Orphan Drug Strategies - What Would They Mean for Rare Cancers?
- 16. 16 For Organizations - What Are the Challenges - Administratively, etc…
- 17. 17 Is There an Opportunity or a Need for the Rare Cancers Community to Come Together? What can we learn from other jurisdictions?
- 18. 18 Final Thoughts • For the individual caregivers and patients on the line - what can they do? • For groups, how can they work together? CORD, CCSN, etc. • Next steps for the cancer survivor community more broadly
- 19. 19
- 20. 20 Thank you! William (Bill) Dempster wdempster@3sixtypublicaffairs.com 613.800.8344 (direct) 613.614.0283 (mobile)
- 21. 21 Canadian Cancer Survivor Network Contact Info Canadian Cancer Survivor Network 1750 Courtwood Crescent, Suite 210 Ottawa, ON K2C 2B5 Telephone / Téléphone : 613-898-1871 E-mail: jmanthorne@survivornet.ca or mforrest@survivornet.ca Web site: www.survivornet.ca Blog: http://jackiemanthornescancerblog.blogspot.com/ Twitter: @survivornetca Facebook: www.facebook.com/CanadianSurvivorNet Pinterest: http://pinterest.com/survivornetwork/
Editor's Notes
- The illustration shows how a biomarker test is performed. The clinician will discuss the test and the purpose of the test with his patient. A tissue sample (biopsy) of the tumor will then be taken, and the clinician orders the biomarker test. If a patient has already had a biopsy, he or she may not have to get another one. The clinician may be able to see if the tumors are positive for certain biomarkers by testing a previous sample with a biomarker test. The biopsy is sent to a lab and is analyzed. The clinician will get the results and discuss treatment options with the patient based on these results. Patients can aim to learn more and engage with their health care team and/or patient group to better understand how biomarker tests can help shape their treatment. Key questions to consider include: What biomarker tests are recommended and why? How are the tests performed? How often do I need the tests? What do the results of the tests mean? How will the results affect my treatment options? In this regard, I want to mention that the Canadian Cancer Survivor Network will be hosting a webinar on biomarkers on November 29th. Patients and patients groups can also get involved in personalized medicine policy and advocacy: work with health technology assessment agencies and payers to ensure that value assessments are patient-centered and that biomarker tests are reimbursed and included as part of patient care work with payers to ensure that emerging paying models are aligned with personalized medicine and that they recognize the improved health outcomes from personalized medicine In particular, patients and patient groups will get the chance to provide input on the new evaluation process for companion diagnostics that CADTH is developing in the coming months.