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Metastatic Breast Cancer Advocacy IN Canada

Impressions of an Metastatic Breast Cancer patient advocate at the 2017 Canadian Cancer Research Conference in Vancouver

From November 3 to 7, I was fortunate to join 13 patient advocates at the first Patient Involvement in Cancer Research Program (PIP) at the 2017 Canadian Cancer Research Conference.  The patient group included breast, brain, lung, anal, blood cancer survivors, young adult cancer survivors, and family members/caregivers.  There were two of us with metastatic breast cancer.  PIP brought together patient advocates and mentors with an impressive collection of advocacy approaches and experiences. 

Exploding with Ideas

The conference was primarily on fundamental research, with streams, sessions and posters beyond my level of biology (grade 10 back in 1982).  It was nonetheless gratifying to be exposed to efforts to advance knowledge and identify potential new treatments/cures.  Some streams were more accessible to patients and included health economics, health technology assessment and psycho-social oncology. 

I arrived at the conference with questions about trials and metastasis.  I wanted understand how priorities in research were influenced.  What changes would make accessing clinical trials easier?  I had to find my own trial and travel outside of Canada for it.  I met several like-minded people who had faced similar challenges.  My hope is we’ll keep the conversation going on what needs to be done to help patients navigate and find trials, and, of course, to encourage more trials. 

From a broader perspective, I wanted to find out more about barriers to conducting research into metastasis. It appears that less research is done on metastasis because its complexity – so I’ve come away knowing that this is still a challenge be taken on.  It seems most effective to encourage/influence researchers to consider a focus on metastasis when they are just starting out. 

I returned from the conference exploding with ideas.  Here are some takeaways, but the list is not in any way exhaustive. 

Advocacy

Patrick Sullivan, a patient/family representative on the CCRA Board, was the instigator of the PIP stream.  He spoke of his advocacy for pediatric cancer research. 

He suggested four responsibilities for the research advocate: 


  • Learn about the relevant science, but don’t expect to become an expert
  • Learn how the system works
  • Be professional and participate
  • Listen carefully. 




















Source:  Patrick Sullivan

This slide from his presentation (Know the Difference – Vision/Strategy/Tactics) is helpful as I try to prioritize advocacy issues and projects.

Barry Stein from Colorectal Cancer Canada (CCC) outlined some patient advocacy projects.  CCC’s work is inspiring because they are involved in areas that are also very important to MBC patients:  patient values input into the pCODR (pan-Canadian Oncology Drug Review) process; clinical trials; and patient registries.  Stein also spoke during the “Decision Making in Cancer: Evolving Perspectives” session with more details on the CCC and the ongoing Patient Values Project at the University of Calgary. 

Plenary -  Cancer and the Immune System


Immunotherapies are some of the best news in cancer research.  While still evolving, some of the treatments are game changing.  I hope that triple negative breast cancers will benefit too.  The three presentations were informative and educational – I keep returning to the slides such as these two from Mellman’s presentation:

1) The cancer immune cycle and where the treatments in development fit in and

2) The continuum from immune “inflamed” to immune “desert”. 

 





















Source:  Mellman, I, “Mechanistic Basis of Cancer Immunotherapy” (2017)






















Source:  Mellman, I, “Mechanistic Basis of Cancer Immunotherapy” (2017)

 
Two ideas that I’ll watch out for –

1) The Canadian Car-T program as a way to control costs but have Canadians benefit from this advancement (Nelson)

2) Patient-specific vaccines to make tumours more immunologically active (Mellman). 

 

Plenary - Metabolism and Cancer

These presentations were super interesting but above my biology pay grade.  The presentation by Julie St-Pierre on PGC-1α, metformin and breast cancer was fascinating, but still a long way from the clinic. 

I’ve seen the Hallmarks of Cancer model previously, which helps understand how cancers happen.  David Wishart’s presentation showed a slide with linked these hallmarks them with metabolism.



















Source:  Wishart, D, “Cancer as a Metabolic Disease”, (2017)

 
Health Economics, Health Technology Assessment & Clinical Trials


Hearing about personalized medicine and other advances was very exciting as a metastatic patient who needs options and cutting edge treatments now (and knows others who do too).  But true to economics’ moniker as the “dismal” science, the health economists’ presentations pointed out the high costs and reminded us that dollars spent on one thing can’t be spent on another.  One slide even referred to “winners and losers”.  Yep! Difficult to listen to when you are likely among the “losers”, especially with challenges such as extended review and price negotiations for new drugs (ie., palbociclib), potentially slower approvals and delisting (removing options) with new committees (CAPCA/CDIAC), insufficient investment in clinical trials, etc... 

One takeaway from the session on Innovative Clinical Trials was that the role of Randomized Clinical Trials (RCTs) as the “gold standard” for decision-making is under scrutiny. 
 

Psychosocial Burden

I am most interested in research that will lead to a cure.  However, one can’t be involved as an advocate in metastatic breast cancer and not acknowledge big gaps in psychosocial care and patient navigation.  It’s good to see these sessions included. 

 
Future

I hope the CCRA will continue its PIP program for 2019 and expand to include a larger group.  The ratio of 1000 researchers to 14 patient advocates was daunting.  I would like to return because I’ll know how to engage more fully but I also think it is important to let many more patient advocates gain this experience.  I appreciated our Cancer 101 introduction.  It might also be useful to have a Cancer Biology 101 as well, and some guidance to navigate the poster sessions.  Ideas that arose during our post-conference debrief include more patient introductions to the sessions (
such as Nathalie’s that was so well received) and patient advocacy posters. 

Thank you to Kim Badovinac for her work putting it all together, to the mentors for taking time to assist, and to Patrick Sullivan and Diana Ermel, the two patient/family representatives on the CCRA Board for being key supporters. 

Lastly, the CCRA deserves kudos for fully embracing the introduction of the Patient Involvement Program.  As patient advocates we were treated with respect.  Conference attendees were reminded of our presence and encouraged to seek us out.  The researchers were all welcoming in their conversations.  It was a great beginning and I look forward to the next one. 



Disclaimer –I am grateful to the Canadian Cancer Research Alliance (CCRA) members who sponsored the PIP program and covered my expenses.  Opinions are my own and descriptions are based on my perception/understanding.