Patients excluded by federal framework – 4 million to be squandered on yet more data gathering.
May 30th, 2017 Global TV News
The federal framework released by government embraces the status quo and cedes responsibility for Lyme research and management back to the same bureaucratic self appointed experts who have mismanaged the issue for decades. The patient and their experts are excluded from the process yet again.
There are a relatively small handful of people within our bureaucracy who have access to our tax dollars and these people make all decisions on Lyme disease behind closed doors. A good ole boy research network receives funding from our Canadian Institute of Health Research (CIHR) while not living up to the rules of ethics that govern the CIHR. It is very clear under rules of ethics that patients and their chosen experts must be at the table and engaged but once again this fundamental rule was simply ignored.
There should be an independent review of why rules of ethics within CIHR and the university through which the funding was sought, have been broken or stretched to the maximum, by whom, how frequently over the years, and remedies put in place. Too many lives are at stake to not undertake this review.
The framework names the same bureaucratic agencies such as the the Canadian Public Health Laboratory Network, the Public Health Agency of Canada as well as lobby group the Association of Medical Microbiology and Infectious Disease of Canada (AMMI) as though these layers of organizations are separate and diverse. They are not when it comes to the Lyme file. Now you add to it the national Lyme Disease Research Network (LDRN), just another layer of the same 40 to 60 people taking our money to do nothing for the patient except devise roadblocks to accessing appropriate care, while excluding the patient and their experts in the process.
We have concrete evidence the AMMI was consulted in the writing of the framework while our experts were denied the same privilege. This needs to be challenged by our lawmakers.
To exemplify the level of disdain for patients and their experts, during the first conference of the LDRN one of their members from the BC Centre for Disease Control suggested they seek funding from CIHR to build a website to compete with CanLyme in order to lower CanLyme in the search engine rankings. Rather than explore good, open ethical discussion while engaging patients this is instead the childish mindset of those spending our hard earned money.
As Dr. Tam reiterates in this Global news piece her focus is on yet more surveillance. They haven’t got surveillance right in 30 years… poor data in equals poor data out. Dr. Tam… tell doctors to stop worrying about where you think Lyme disease occurs. It occurs everywhere in Canada yet physicians are still being told to judge the sick patient by some alleged knowledge of risk which is the same nonsense that got us to the need for Bill 442 in the first place.