Collective Oncology Network for Exchange, Cancer Care Innovation, Treatment Access and Education

CONECTed

Immunotherapies are one of the greatest evolutions to emerge in the field of oncology, harnessing the body’s own immune system to fight cancer, and providing patients with metastatic and advanced cancer a real chance of survival. As new innovative medicines come to the Canadian market, questions of sustainability of our health care system continue to take precedence over the conversation.

 

In 2015, The Save Your Skin Foundation invited a group of leaders in patient advocacy to discuss the need for a network focused on Immuno-oncologies and dedicated to ensuring access to these important therapies for cancer patients in Canada. Since then, CONECTed, a collective of patient advocates, has been dedicated to raising awareness of the needs of cancer patients through a unified and cohesive patient voice and has been involved in addressing issues within the system, at the government level and in HTA both related to immuno-oncology and other therapies.

 

We are using our leadership to bridge the gap that currently exists within the system, and to help bring to the table evidence-based solutions that improve access to innovative oncology therapies and approaches that promote high-quality care and improved patient outcomes. Our focus is an interdisciplinary approach to improving patient outcomes through policy shaping, solution building, education and system change so that all cancer patients can have access to cancer drugs regardless of socio-economic status, postal code or other barriers.

Our VISION 

A world where all people living in Canada get equal and timely access to safe, effective treatments that improve patient outcomes (free of barriers).

 

Our MISSION 

Ensure the right environment exists in Canada for cancer patients to have access to cancer therapies.

 

Our MANDATE 

Patient groups working together to promote greater education and understanding of therapies to ensure that Canadians have equal, timely access to these therapies, companion diagnostics and supportive care.

Steering Committee

Kathleen Barnard, Save Your Skin Foundation

Louise Binder, Save Your Skin Foundation

Annette Cyr, Melanoma Network of Canada

Martine Elias, Myeloma Canada

Elizabeth Lye, Lymphoma Canada

Christina Sit, Lung Cancer Canada

Barry Stein, Colorectal Cancer Association of Canada

View Bios

Initiatives

 

HEALTH CANADA SUBMISSION
Patented Medicine Prices Review Board (PMPRB) Consultations

Our health care system is complex with many key decision makers at either federal, national or provincial levels that are responsible for the health care services Canadians receive. Canada, like many countries, is facing escalating healthcare costs as payers struggle to reconcile drug budgets with patient access to promising new health technologies. Health Canada holds different responsibilities influencing the landscape of our health care system, including drug safety, quality and effectiveness, and an important role with respect to drug pricing. The Patented Medicine Prices Review Board (PMPRB) undertook major consultations regarding possible reform of its Compendium of Policies, Guidelines and Procedures and asked for input on how to rethink the Guidelines in order to improve performance in ensuring that pharmaceutical patent holders do not charge excessive prices. We, as patient organizations, recognize the regulations overseeing drug pricing need to be re-evaluated, especially given the changes in our ecosystems since the inception of these regulations.

 

We are grateful to all those involved in seeking the input of groups like ours and other stakeholders on protecting Canadians from excessive drug prices.  CONECTed participated with 16 other concerned patient groups. PMPRB Submission June 28, 2017  

Campaigns

 

#CANCERCHANGED CELEBRATES LIFE THROUGH PHOTO STORYTELLING – Press Release

The #CancerChanged campaign showcases the changing face of cancer and the quality of life that cancer patients are living with during and after a cancer diagnosis, to provide hope and inspiration to others faced with the same path. Through documentary style photo essays shot by award winning Canadian photo journalists these cancer patients are sharing their story of survivorship and celebrating life after a cancer diagnosis.  “We encourage anyone affected by cancer to use #CancerChanged and to post a picture to social media to share their own experience and story of survivorship, whether it’s been three months or 10 years”.  Storytelling: One survivor at a time.

Events

 

BioCanRx 2nd annual Summit for Cancer Immunotherapy (Summit4CI).
June 25 – 28, 2017, Quebec, Canada
The Summit4CI showcased innovative research in cancer immunotherapy, featuring national and internationally renowned scientists and bringing together the Canadian cancer research community. Report

 

Patient Group Pathway Model to Accessing Cancer Clinical Trails Consensus Meetings
June 13, 2017, 7:00 am to 5:00 pm EDT ~ Loews Hotel Vogue, Montreal, Quebec

 

National Cancer Survivors Day
June 4, 2017

 

IO Network Patient Leader Education Summit 2017
March 31 – April 1, 2017, Toronto, Ontario
This meeting brought together experts across oncology to review present and future directions for oncology research and clinical care, describe the review and reimbursement pathway including challenges and barriers to access, and identify areas where patient advocates can collaborate to overcome some of the barriers to translate to increased access to innovative therapies and improved patient outcomes. Read more

Contact

 

Kathy Barnard, Chair, CONECTed
kathy@saveyourskin.ca

Lia Iapaolo, Project Manager, CONECTed
lia@saveyourskin.ca

CONECTed will soon be launching it’s own website.

Come back soon, more info coming!

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