Friday, October 09, 2015

Let's write!

I'm several blog posts behind --- time seems to be hopping out of my hands! My apologies. I'll get to post the story about an amazing party held for us on September 26 (post added), about a visit to a quaint town in upstate New York and about dipping a toe (literally!) into the waters at the very southern tip of Canada. But first --- an important post and request for help if Canada is to set up a federal framework to deal with Lyme Disease. 

As per Bill C-442 *, the Lyme Disease Conference is required to be held by December 16, 2015 - but Health Canada hasn't planned for the event. There is no venue, no agenda, no date confirmed, no budget and no invitations to attendees.
Time has run out to stage a professional conference.

[ * Bill C-442 is the Federal Framework on Lyme Disease Act, which was posted in December 2014. See post ]

Jim Wilson has sent the following information and background:

The bureaucrats responsible for organizing the conference delayed appointing the chairpersons to organize the conference until late July 2015, despite many requests to get things going. Three chairpersons were finally appointed:

  • Jim Wilson, president and founder of CanLyme (link
  • Dan Gregson, President of the Association of Medical Microbiology and Infectious Disease of Canada (AMMI) (article plus picture
  • Dr. Greg Taylor, Chief Public Health Officer for the Public Health Agency of Canada (link with picture

The first meaningful meeting was set in August - but then the election was called for October 19.

Once the election was called, the Public Health Agency of Canada claimed that they could no longer talk to the chairpersons until after the election because election rules of Caretaker Convention applied which stipulates that only routine government businesses can be undertaken.

As a result the chairpersons have not been able to plan for the conference as required under Bill C-442 and in no way can they effectively execute a professional medical conference in the 7-8 weeks between October 19 and December 16, 2015. Medical conferences typically require many months of planning.

Currently there is no budget for this conference, no venue, no date, and no attendees.

They have sought advice from insiders and found that we can ask for an extension to the requirement that the conference be held by Dec. 16th this year - if major stakeholders agree. We want that date extended by at least six months, preferably into May 2016. 

Each Lyme patient is an important stakeholder.

Please use your own words to get the following message through:
"Bill C-442 requires that a medical conference be held by December 16, 2015.
Due to bureaucratic delays in not appointing chairpersons to organize the conference until the election was called, no discussions have been allowed and will not be allowed until after the election due to Caretaker Convention rules. There is no budget, no venue, no date, and no selection of presenters or attendees. In no way can a professional medical conference be structured with stakeholders in the few weeks following the election until Dec 16, 2015.
I am asking for your support in requesting an extension to the time commitment under the legislation for the medical conference to be held, moving that date forward to May 2016.
Only then can a properly structured conference be executed that will meet the good faith intent of the Bill that received unanimous support from all parties. The issues of diagnosis, treatment and surveillance are complex, requiring experts from various fields of science and medicine to provide input.
Looking forward to your reply."
The people to write to are:

1) Stephen Harper

2) Justin Trudeau

And very importantly, to the federal Deputy Minister of Health which can be done at

If you wish you can also send cc's to your local party candidates.


Thank you for taking action and for sharing this message with other Lyme patients in Canada! Every person counts. Together we are stronger.

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