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.
Another disgusting misuse of our own tax money! These doctors and politicians only care about the bottom line! Can’t help with Lyme it will effect the bottom line! What other sickness, disease or injury has to endure these warped ideals!
I was very concerned when they made the puppet Dr Philpott Health minister! She clearly either does not care or she is protecting the bottom line! Never should we put a fox in charge of the hen house ever again! We all know the outcome!
Clearly our battle is still not over. We must not give up!
Excellent synopsis of what has been and continues to happen.
Thank you for the excellent summary. There will be no leadership here. Provinces will have to jointly pass legislation protecting physicians who wish to treat their patients what is currently allowed in the guidelines as they have recently done in Maine. HIV/ AIDS was in a similar situation until activists got involved and it was discovered that it killed and it wasn’t just a disease of gay men. It took the authorities about 15 seconds to realize Zika virus was sexually transmitted. The pharmaceutical industry earns $55 billion a year from AIDS medication and diagnostics. With 300,000 new cases of Lyme disease every year in the U.S., we must convince industry that they could be making far greater profits from Lyme disease if they would develop better diagnostics and targeted medications since it is 6 times more common than HIV/ AIDS.
What we need now is not surveillance or advice about how to NOT GET THE DISEASE. We need help dealing with it, since there is no social safety net for people with this disease. THAT is now the more immediate crux of the problem for those of us who already have it. Drugs have their place in treatment (i.e. combined properly with naturopathic remedies) but once we’re finished with the antibiotics, naturopathic remedies must take over the whole job, and no they are not all herbs – some of them are machines, actually (!) but the best way to describe what we need is:
~ OHIP coverage for Naturopath consultations and remedies (i.e. provincial health plan coverage);
~ A workplace health insurance plan coverage for Naturopath consultations and remedies;
~ Disability options that include coverage for Naturopath consultations and remedies (today they offer free drugs – but drugs are not what we need)
~ Canada’s National Lyme Disease strategy to ensure that these extensions are available to every person who has a diagnosis of Lyme Disease or Chronic Lyme Disease in a Naturopath’s office.
It’s fine to invest $4 million into research for future generations, but Lyme sufferers and their families are falling quickly out of the middle class and landing in trailer parks on account of the expense associated with adequate treatment and the failure of the medical system to recognize the 6 or more years of study that Naturopathic doctors must undergo to be licensed to practice.