Recap and update:
April 14th - Dr. Alison Bested (via phone), Margaret Parlor (President of National ME/FM Action Network) and myself met with one of Federal Health Minister Dr. Jane Philpott's Policy Advisors, Dr. Jesse Kancir. Submission of a Patient Perspective proposed 2 next steps: a Stakeholders Meeting, and request that Minister Philpott acknowledge ME Awareness Day.
April 15th - I sent an email to Dr. Kancir to thank him for the meeting.
April 28th - I sent an email attaching Patient Perspective II calling for a Federal Framework for Myalgic Encephalomyelitis, included an invitation to the Parliamentary Breakfast (co-hosted by National ME/FM Action Network), an invitation to a post-Breakfast meeting to discuss a Federal Framework, and a request that Minister Philpott acknowledge ME Awareness Day.
May 9th - Dr. Kancir replies, his email is below.
May 11th - My reply to Dr. Kancir, my email is 2 below:
Hi Scott,
Sorry for taking so long to respond to this request. I was reminded of this email today when an invitation to the ME/FM breakfast this week landed in my inbox. It doesn’t seem like at this point I’ll be able to make it out to that breakfast, though I’ll approach some colleagues and see if they are interested in attending. It may be that one of our regional desk staff members may be able to head out. One of the difficulties with a breakfast meeting is our earlier starts to our days and these invitations frequently have to be missed by us. If one of my colleagues can attend, I’ll let them know of the invitation to meet and perhaps something can be arranged?
I’ve printed off your last submission and will aim to read it this week, as well. I know the passion that you bring to this file and I appreciate you taking the time to personally address a submission to me.
Finally, regarding the announcement around International ME Awareness Day, I’ll forward along the request internally to the appropriate team member. Decision on announcements are outside of my scope here and so perhaps there’s already something in the works I don’t know about.
Again, thanks for reaching out. I hope you are doing well and that the struggles you mentioned a few weeks back ago with your health have improved.
Take care,
Jesse
My reply on May 11th:
Hi Jesse,
Thank you for your email responding to my request. However, the content provided little confidence that I have been successful in my attempts to adequately convey the urgency to prioritize the needs of Canadian ME patients and develop a Federal Framework for Myalgic Encephalomyelitis.
Now that I have communicated details of egregious harm to Canadian ME patients within the medical system to you and Minister Philpott, we share an ethical responsibility to stop the harm, start the research, and start the treatment. Jesse, I do not make that statement flippantly. Inaction is a moral failure.
I understand your concerns about jurisdictional boundaries. Yet, those boundaries are the reason the Minister must intervene. The Federal Framework for Lyme Disease conference beginning May 16 is a current example of federal intervention working towards improving healthcare in Canada.
The need for intervention is obvious. Canadian ME patients not only have the highest unmet health care and research funding; but also, they are being harmed by the medical system with contraindicated treatment. Each of these individually would merit review; collectively, they are indicative of ongoing systemic failures.
Past behaviour is the best predictor of future behaviour. Minister Philpott has “walked the talk” with respect to HIV/AIDS. She identified patients’ needs, and responded accordingly. Now, it is Canadian ME patients whose needs are greatest. The systemic issues presented in my Patient Perspective documents can only be addressed by federal leadership implementing a Federal Framework for ME.
Jesse, if it is not within the scope of your position to meaningfully bring this issue to Minister Philpott’s attention, please let me know who I need to contact within the Ministry of Health to ensure this important initiative receives the attention it deserves. I look forward to hearing from you.
Sincerely,
Scott