February 7th, 2017
As per the requirements of Bill 442, An Act respecting a Federal Framework on Lyme Disease Health Canada held a conference on Lyme disease in May of 2016. It was a well balanced conference that revealed significant divergent opinions among experts on the most important issues to the affected Canadian… diagnosis and treatment.
Without engaging the stakeholders for input, the Public Health Agency of Canada has written a draft version of the report that is to be presented by the Minister of Health to parliament by May 15th of this year. Rather than follow the good faith intent of the legislation that would have seen good robust discussion on the wording of the report, the federal bureaucrats fell back into their closed door non-transparent in-house mode of operation.
The report in no way meets the mandate of the legislation. It ignored everything that was presented by experts and patients at the legislated May 2016 conference. It is NOT a framework and there is nothing to build upon. It has to be set aside and rewritten with the patients and their experts.
Now, they are asking for your input by sending an email to their email address no later than March 8th, 2017 …Lyme.Framework.Consultation_Consultation.Cadre.Lyme@phac-aspc.gc.ca
They had 9 months to draft this poor document and expect Canadians to draft a well founded response within 30 days. This is a tactic they use regularly to control messaging.
Patients were not heard … for example watch this clip of Sarah Cormode’s testimony at the conference, she was one of 100 patients who told their story.
We recommend CanLyme be cc’d at firstname.lastname@example.org on any communication you send them in order to assure what input was actually provided by you does not end up being open to their “interpretation” of what your input actually was. If afterwards we ask for more details of actual input they will hide behind privacy rules just as they did with the terribly designed online survey they ran in June of 2015, again with no consultation with stakeholders in the design and data gathering methodology.
Please read the wording of the framework carefully, specifically Sec 3.
” … for the purpose of developing a comprehensive federal framework that includes
(a) the establishment of a national medical surveillance program to use data collected by the Agency to properly track incidence rates and the associated economic costs of Lyme disease;
(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and
(c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within Canada, designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management. ”
The draft report that PHAC has written HAS MET NONE OF THE REQUIREMENTS LAID OUT IN SEC. 3 and it certainly was not consultative. .
SIGN THIS PETITION AND HAVE YOUR FAMILY AND FRIENDS SIGN AS WELL.