Parliament – Bill C-442 transcript and patient concerns over term “Best Practices”
March 4th, 2014,
On March 3rd, 2014 in Canada’s House of Commons, Elizabeth May brought her private member’s Bill C-442, the National Lyme Disease Strategy Act, to the floor for second reading. It has support across all parties.
The one point that CanLyme has received many emails and phone calls about in the past 24 hours was the indicated desire to change the term ‘standard of care’ to ‘best practices’. Victims of Lyme Disease over the past decades fear this term ‘best practices’ the most.
Chronic disabilty and death are not the ‘aches and pains of daily living’ as stated in the current ‘best practice’ guidelines. Lyme Disease cannot be defined by the poor test (now acknowledged as a very poor test) as the ‘best practice’ guidelines have defined it. An infection from Borrelia and other co-infections that come from the same tick must define the illness in that Lyme Disease has been shown to be caused by many strains of Borrelia that we may be exposed to, and frequently, other confounding pathogens. Each strain of Borrelia does not cause the same symptoms as shown in research, yet the current ‘best practice’ guidelines reflect only one, non-wild, laboratory strain and the symptoms it may cause.
The victims of this disease (and victims of ‘best practices’) attempted to have their voice heard during the past 25 years but were shut out of the process. As a result ‘best practices’ continued to cause death and disability Canada-wide. Those ‘best practices’ guidelines were dogmatic and ill conceived, yet were imposed upon the Canadian public without regard for the wide international debate in medical science circles questioning the quality of the science used to to impose a lifetime of disability and financial collapse on the many thousands of victims. ‘Best practices’ have left a trail of devastation in spite of the arguments from the patients and their experts over the past 25 years, arguments which have now been shown to have been correct.
Whatever term is used, the victims and their experts must be brought into the process as equal partners to write these ‘best practice’ guidelines, otherwise this was all for not. There is an intentional movement within the medical leadership of Canada to prune research to select only that which fits their dogma. This is clearly evident in the many Freedom of Information searches done in various provinces across Canada.
The lowly public do not have a chance up against the powerful medical lobby across Canada and only our politicians, who watch their once healthy constituents fall to ‘best practices’, can change the system to the benefit of all.
Another 25 years of imposed ‘best practices’ without equal patient input will bring the medical system to it’s knees in terms of health care dollars required to administer the rapidly increasing chronically ill population. Employers with large contingents of outdoor workers are already being affected and this will only increase significantly unless the system includes the watchful eye of the victims and equal input from their experts.
The time is now for our elected representatives to ensure the public is protected from poorly contrived ‘best practices’. It is common sense that simply having a specific degree in medicine, or microbiology does not give one licence to exclude the very educated voice of the victims and their experts. Will we truly see common sense brought into the medical bureaucracy, who to date have been allowed to do whatever they want with our lives and to hell with anything we say (because they can), and will our elected officials protect us and insist on an equal partnership?