Friday, March 30, 2018

Queen's Park 2.0

Again this week I had the opportunity to visit Queen's Park, a little more than two years since the first time the girls and I were invited by Save Your Skin Foundation to attend a reception and presentation on the landscape of melanoma treatment in Canada. 

In fact I was there twice this week, once to meet with our very own Bruce-Grey-Owen Sound MPP Bill Walker, and a second time to attend a breakfast event to inform on the topic of immuno-oncology in cancer treatment.  One of the big parts of my cancer story is that I was lucky enough to receive immunotherapy treatments in the adjuvant setting, following my stage IIIb nodular melanoma diagnosis in April 2014.  I am a special snowflake in this regard, as I received it by clinical trial, when it wasn't (and still isn't) available in Ontario - or Canada.  It quite possibly saved my life; with each month that passes I celebrate that I am getting that much more time than I was first given when diagnosed.  

Anyway, in the name of sharing the importance of a story like mine in order to to give hope to others, and to advocate for better access to these life-saving treatments, I was invited this week to represent Save Your Skin at the "Queen's Park Advocacy Days" in Toronto.  This event was coordinated and hosted by Canadian Cancer Survivor Network (CCSN), and included a series of advocacy meetings with MPPs and other provincial government advisors and representatives, to discuss the importance of timely access to the cancer treatments that Ontario patients need.  

CCSN is a patient organization based in Ottawa, which works on behalf of all cancer indications, recognizing the value of immunotherapy treatments in various types of cancer such as lung cancer, some types of lymphoma and myeloma, and even bladder cancer.  Melanoma is the poster child for research in immunotherapy, as it was among the first to respond to this type of treatment, one that uses the body's own immune system to fight cancer cells.  

CCSN President Jackie Manthorne delivered heart-warming opening remarks at the breakfast event, and then we heard from an Ottawa-based Oncologist as to how immunotherapy works and what benefit it holds for treatment of lung cancer, as well as Sudbury MPP France GĂ©linas who commented on the need for improvement in the Ontario healthcare system, and the importance of the patient voice in our drug approval process across Canada. 

It was my first time seeing Jackie speak, since I first "met" CCSN online in 2016, and she did a great job of addressing the patient advocates in the room, as well as the government folks who took the time to attend the event.  Any opportunity to connect patients with decision-makers is a great one.  I was pleased to represent Save Your Skin Foundation as a friend of CCSN, and enjoyed seeing my colleagues from fellow patient groups such as Lung Cancer Canada, Myeloma Canada, and Lymphoma Canada.  We often work together in this field and join voices at events such as these.  

Another group we have crossed paths with in the past is Bladder Cancer Canada, and I had the pleasure of chatting with one of their representatives this week at both meetings.  Bladder cancer survivor and incoming Chair of their Board Ferg Devins, a communications strategist in Toronto, was my advocate-buddy in meeting with Bill Walker, and an experienced navigator of the many hallways and entrances/exits of the "pink palace" that is the Queen's Park main building.  We had a productive discussion about cancer care in Ontario with Bill, and I expect we will collaborate again in future. Shout-out to Ferg - and thanks to Bill Walker for generously offering for us to use his parking spot yesterday! (super huge help for this non-city girl trying to find a parking spot anywhere in downtown Toronto agh! - and a nice bonus for those of us who wear stylish high heels to meetings ;-) 

I also had the honour of bringing my daughter Cass with me, so she saw first-hand what I work on in my job every day.  She was pleased to realize she understood what everyone was talking about, and she even had a nice conversation with a curious MPP who asked her what it was like being the caregiver of a cancer patient who received "this immunotherapy stuff."  
She had expressed some nervousness on the way to the event, worried that she might not know what to say if anyone asked her a question, but I assured her she would be great, as she has first-hand experience with the topic at hand... and sure enough she was a fantastic spokesperson!  And who knows, she may have touched a nerve with the gentleman she spoke to, and he may have left the meeting with just that little bit more insight into the reason for the event and the need for government to understand and work to improve. 

After the immunotherapy information session we were invited to attend Question Period!  Thanks to CCSN and to Bill Walker MPP, Cass and I, along with my colleague Louise Binder, Health Policy Consultant (Toronto) with Save Your Skin, were introduced in the Legislative Assembly of Ontario.  It was awesome to hear our names and that of Save Your Skin Foundation go on record in Ontario, an experience I was happy to relay to my boss and friend Kathy Barnard, President & Founder of this Vancouver-based group. Save Your Skin Foundation is a national not-for-profit patient organization, and we were all thrilled to be recognized in Ontario.  We support patients across the country, and have many friends in Ontario, so it was a sweet moment to make it official.

Was interesting to witness Question Period too, especially the day after the budget dropped - woo hoo lots of clapping and table-banging theatrics between party representatives! You can view archives of the Question Period HERE. Of course we couldn't take any photos inside the chambers, but at that link you can see what we saw.  Cass and I concur it was worth leaving Meaford at 4am to travel to!   
I also got a look at the new Minister of Health and Long-Term Care for Ontario, so I can picture who I will be addressing in an upcoming letter about melanoma patients' needs in immunotherapy treatment.  :-) 

A few more pics from the day, enjoy...

Oh and as we were walking around the outside of the building too, and I was oooh-ing and ahhh-ing about the architecture and lamenting the history of this building, Cass sweetly breezed past me unconcerned, and with a flip of her hand said "MOM... please remember I just travelled to EUROPE!"  LMAO - point made.  This is not Gaudi.  But I do appreciate the history of our local capital.  Huff.  ;-)

PS - the kid did have a great trip to Italy and Spain, we all survived. LOL  I am proud of her for putting herself far outside her comfort zone and achieving that trip (and daily gelato tastings!)  And I am proud of her twin, for holding her own while her sister was away, and for going to school yesterday while Cass and I went to the city.  Claire - I will ask Mr. Walker for another opportunity to visit Queen's Park, so you too can see the spectacle that can be our government in action.   Love you both!

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