Wednesday, March 29, 2017

Where I'm At

I should be sleeping but I'm a bit too humming with nervous energy.  For the last couple of months, my colleagues and I have been working very hard on a biggie project which will come to life this weekend.  I'm proud of it, I am excited about it, and I am challenged by it.  

The better portion of my waking hours lately have been spent helping to plan an event at this beautiful location in downtown Toronto, St. James Cathedral Centre:

It is a beautiful space: that glass-walled area built onto an historic property which boasted one of the largest buildings in the city, in the late 1850's.  And in it this weekend I will be able to witness first-hand a dream team of experts discussing cancer care in Canada, and how it can be improved.   

Ever since I was lucky enough to receive immunotherapy treatment post-surgery for metastatic melanoma, it has been pretty high on my list of good things to have.  I received it via clinical trial, which is the "lucky" part.  The fact that immunotherapy is not necessarily available to Canadian cancer patients is a complicated dilemma, and one that I will continue to bring attention to.   

This Friday and Saturday will mark the inaugural Patient Leader Education Summit, hosted by the Immuno-Oncology Network for Patient Organizations.  

Which means: a group of concerned patient advocacy groups (such as Save Your Skin Foundation, Lung Cancer Canada, Kidney Cancer Canada, and several more) have invited a whole bunch more concerned patient advocacy groups to join them in a discussion and working session as to how we can all work together to gain better access to treatment for Canadian cancer patients across all cancer types (pan-tumour).  

It is fascinating.  There is so much to it all... I had no idea.  The amount of work that patient advocacy groups go to for patients is huge, and not always obvious.  I knew they supported patients in the day to day dealings of a cancer diagnosis, but I did not know the magnitude of the scientific and political aptitude they require in their artillery in order to represent their patients.  

I'm going to stop talking now, and leave the rest of the announcement to the experts.  Please read the press release announcing the impressive list of presenters and panelists who will be involved in the Summit along with more than two dozen patient advocacy groups, it gives a good explanation of what I will be doing tomorrow (travel and prep day) and Friday and Saturday, the conference:

TORONTO, March 27, 2017 /CNW/ - The Immuno-Oncology Network for Patient Organizations today announced its inaugural Patient Leader Education Summit, scheduled for Friday, March 31 to Saturday, April 1, 2017 at the St. James Cathedral Centre in Toronto. The Summit will bring together some of Canada's leading patient advocates in oncology for a two-day meeting intended to educate and identify solutions to expand access to cancer immunotherapy treatments.  

"Cancer immunotherapy medicines have been one of the greatest advancements in cancer treatment, allowing patients with metastatic and advanced disease a real chance of survival, and I am living proof of this reality," says Kathy Barnard, Founder and President at the Save Your Skin Foundation. "Now, we must unify the patient voice and empower patient advocates and patients to be fully engaged in healthcare decision-making, to work together with all the stakeholders involved towards solutions for a sustainable system, and to ensure that cancer patients have access to innovative cancer therapies."  

A highlight of the event will be a discussion about the landscape of cancer therapy today and a look at the future of cancer therapy led by world-leading cancer immunotherapy researcher Dr. John Bell from the Ottawa Hospital. Dr. Bell will be joined by renowned medical oncologist Dr. Marcus Butler from the Princess Margaret Cancer Centre, University Health Network, where he is also the director of the immune monitoring laboratory.

"Cancer immunotherapy is a class of treatments which stimulate a person's own immune system to target and attack cancer cells," says Dr. John Bell. "Right now, immunotherapy treatments have been used in patients with melanoma, lung and kidney cancers, and research continues to extend their use to include different types of cancer. The possibility for immunotherapy has yet to be realized. We also continue to evolve our research in other areas of care, as we know immunotherapy won't work for everyone. Having a wide range of options for patients continues to be important." 

"As the landscape in cancer treatment evolves to include cancer immunotherapy and other innovative treatment options, medical professionals have a responsibility to collaborate with patients and patient advocates to meet the current and future needs of patients," says Dr. Marcus Butler. "If we work together, we have the potential to improve access to treatments, companion diagnostics, and supportive care and, most importantly, ensure the highest safety and effectiveness of care for everyone."

Summit topics will include the importance of taking a patient-focused approach to care, a panel discussion about the role for patient advocates in the regulatory process, and issues of access to cancer immunotherapy and innovative treatments. The group will develop an action plan that will identify tangible areas of improvement in cancer care delivery. 

The event will feature speakers offering diverse perspectives and opinions based on their experience, including:

  • Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, University Health Network
  • Dr. John Bell, Researcher, The Ottawa Hospital
  • Monette Greenway, Principal & Co-Founder, Precision Rx-Dx
  • Imran Ali, Senior Manager, pan-Canadian Pharmaceutical Alliance (pCPA)
  • Scott Gavura, Director, Provincial Drug Reimbursement Cancer Care Ontario (CCO)
  • Alexandra Chambers, Director, pan-Canadian Oncology Drug Review (pCODR)
  • Marie Hotte, Scientific Coordinator, Institut national d'excellence en santé et en services sociaux (INESSS) via video
  • Heather Logan, Executive Director, Canadian Association of Provincial Cancer Agencies (CAPCA)
  • Dr. Reiner Banken, Senior Fellow, Institute for Clinical and Economic Review (ICER)
  • Joanne Castonguay, Research Director, Institute for Research on Public Policy (IRPP)
  • Dr. Femida Gwadry-Sridhar, Founder & CEO, Pulse Infoframe
  • Ryan Peck, Executive Director of the HIV & AIDS Legal Clinic Ontario (HALCO)
  • Martine Elias, Director Access, Advocacy & Community Relations, Myeloma Canada

About the Immuno-Oncology Network for Patient Organizations 
The Immuno-Oncology Network for Patient Organizations emerged when several patient organization leaders from across Canada began to discuss the needs for a collaborative strategy focused on access to cancer immunotherapy treatments for patients in Canada. The Immuno-Oncology Network for Patient Organizations is dedicated to raising awareness of the needs of cancer patients and their families. Our goal is to work 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 members of the Immuno-Oncology Network for Patient Organizations include the following:

  • Kathy Barnard, Save Your Skin Foundation
  • Canadian Cancer Survivor Network
  • Heather Chappell, Kidney Cancer Canada
  • 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
SOURCE The Immuno-Oncology Network for Patient Organizations

For further information: Kate Hanna, Public relations consultant, 647-962-9948,; Sabrina Hanna, Managing Director, Immuno-Oncology Network for Patient Organizations, 514-972-0031,

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