Tuesday, July 27, 2010

Turning up the volume / Stage 2

Recently we gave the Ontario Ministry of Health some grief regarding the quiet launch of its Lyme awareness campaign in June. Awareness is so vitally important, if it is not done effectively, one would question why they would do it at all. Well we must give credit where credit is due -- we are very pleased to report that, as hoped, the Ministry has indeed turned up the volume.

The Ministry's Let's Target Lyme campaign continues to roll out. Brochures are reported to be popping up in LCBOs and other retail establishments. They have also added an informative and entertaining video segment to their website, introducing a character named Curtis "The Bug Guy". The video clip is embedded below -- definitely worth a watch.

Included in the video are instructions of how to properly remove and save a tick, and take it to your doctor for testing. What the Ministry doesn't tell you here is that the existing tick testing protocol dictates that only Deer Ticks will be tested -- any other types will simply be discarded, regardless of whether you have symptoms of Lyme disease or not. Granted, Deer Ticks are the most common tick known to spread Lyme in Ontario -- but they are definitely not the only ones. As we have come to understand, migrating birds play a major role in the distribution of ticks throughout the province. We have a gentleman in our group, for example, who was bitten and infected by a Lone Star Tick up in Ontario's cottage country. As its name would imply, this kind of tick is much more prevalent in the south-western United States. But just as our Border Control Services do not stop ticks at the border to Canada, similarly, migrating birds don't control what kind of ticks hitch a ride with them. This is a weak point in the Ministry's tick testing protocol that should be addressed.

Additionally, over the last several weeks, the Ministry has been sending out a mailer to Ontario physicians across the province. You can access the 2-page document here (Message from the Chief Medical Officer of Health). One of the highlights of this document is that it dispels the myth that Lyme disease can only be contracted in endemic regions. It informs doctors that Lyme can be contracted anywhere in Ontario. Unfortunately, the document fails to inform doctors about the limitations of the existing Lyme testing protocol in Canada. This is where the whole awareness campaign gets a very low mark -- and it really could do more harm than good. Unless physicians know that the existing testing protocol is unreliable, many Lyme patients will unfortunately be misdiagnosed. This is precisely what happened to so many of us across the country who are now battling Chronic Lyme disease. A delayed diagnosis most certainly results in serious chronic illness. Physicians need to be made aware that a negative Lyme test should never ever be used to rule out Lyme disease. Much more needs to be done to make physicians aware of the clinical presentations of this disease. To that end, CanLyme has prepared this "For Physicians" information -- what every physician should know about the disease.

Last week, CTV News aired a Lyme story on its Lifetime segment, with Health Reporter Pauline Chan. You can watch the video clip here. CTV continues to do a great job of providing good information about Lyme disease, such as:
  • the number of cases of the disease continues to rise in Ontario
  • the disease is difficult to detect
  • it can cause years of debilitating illness if not diagnosed quickly
  • up to half of those infected may not even show a Lyme rash
  • it is often misdiagnosed as MS, Chronic Fatigue, Arthritis and many other illnesses

CTV kindly acknowledged that last week marked the official retirement of Ontario Lyme physician Dr. Jozef Krop (pictured above).  What they left out, was that this doctor's retirement is largely the result of an investigation by the College of Physicians and Surgeons of Ontario (CPSO). The CPSO launched this investigation back in 2008, without one single patient complaint. The investigation centred around the doctor's treatment of Lyme disease. Dr. Krop, who has taken a particular interest in this disease, is trained by the International Lyme and Associated Diseases Society (ILADS). He used ILADS treatment protocols based on the latest research into this debilitating illness. But it so happens that the ILADS approach to Lyme disease is distinctly different from that of the mainstream Infectious Diseases Society of America (IDSA). And this is the centre of the political divide that has callously left so many Lyme patients without access to appropriate care. The CPSO, like other Colleges in the country, has ruthlessly declared open season on progressive Lyme doctors who are earnestly trying to help their patients. So Dr. Krop's departure means that experienced Lyme physicians are perilously close to becoming extinct in our province, forcing many patients to make the costly choice of seeking medical care in the United States. Infectious Disease specialists in Ontario routinely turn away Lyme patients because they have negative Canadian Lyme tests on file -- tests that are known to be seriously flawed and produce high rates of false negative results. While several American States have passed Lyme physician protection laws (Massachusetts is the most recent as of this month), the political courage has yet to be found in Canada to take such a bold move in support of Lyme patients and their physicians. There is so much more that still needs to be done.

A grateful shout-out goes out this month to Dale Goldhawk. His popular program, Goldhawk Fights Back, helps consumers where the powers-that-be have failed to do so. Recently he has taken up the cause of Lyme patients in Ontario. He has conducted several Lyme-related interviews on Zoomer Radio AM740, including an interview with Dr. Maureen McShane, who treats Lyme disease patients in New York State. There is another interview scheduled this week, Thursday July 29th, at 12:10pm (the whole program runs from 11:00am until 1:00pm) with an Ontario Lyme patient/patient advocate. If you are not within broadcasting range, you can listen live from the station's website. Don't miss it!
Please send a brief note of appreciation to Dale Goldhawk and thank him for his interest in Lyme issues and what he is doing to increase awareness. A link to the audio from Thursday's interview will be posted when it becomes available.

While all of these positive efforts are underway, there are still those who are steadfastly opposed to making changes to Lyme treatment protocols in Canada. You can count among them our Federal Health Minister, Ontario's Health Minister and many of her provincial counterparts. What these people fail to comprehend is that the perceived risks of aggressive and early preemptive treatment of Lyme disease do not even remotely begin to compare to the devastation that late stage or Chronic Lyme disease causes to patients. The message of many of these policy makers is that Lyme is difficult to get, easy to treat, and our testing protocols are not only reliable, but if anything tend to produce false positive results. Here is a recent example of a particularly unhelpful Public Health Official from a news piece in British Columbia (Disease Expert Dismisses Lyme diagnosis).

And on that note, a closing thought:
All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
                    Arthur Schopenhauer
                    German philosopher (1788 - 1860)
Welcome to Stage 2.

p.s. Stay tuned for details of events coming up in September, including a Toronto screening of Under Our Skin (with special guest and film director Andy Abrahams Wilson!) and the annual Wall of Hope public demonstration at Queen's Park.