Urgent Message! Contact your MP! Help get Bill C-442 passed!

This is Elizabeth May, leader of the Green Party of Canada.  About a year and a half ago, she tabled Bill C-442 which would create a National Lyme Disease Strategy for Canada.  The bill is finally coming up for debate in Parliament, beginning on March 4. 

Please read her letter below, and write to your MP in the next week or two to urge him or her to support this bill.  For all Lyme disease sufferers, this bill could be the beginning of everything we have been fighting for!  There is a link below to all of the MPs' contact info, as well as a sample letter you can send.  You may want to edit the letter as the sample provided requests an in-person meeting with your MP.

Here's hoping for good things!



Dear Lyme disease advocate,

Today, I am asking for your help in making a difference in the lives of tens of thousands of Canadians. On March 4th, 2014, the House of Commons will begin debate on my Private Members’ Bill, C-442, an Act to Create a National Lyme Disease Strategy.

Many of you are already too aware of the shortcomings of the Canadian medical system in dealing with Lyme. And while not a panacea, Bill C-442, if passed, would bring together Canada’s Health Ministers, medical professionals, scientists, and the advocates for Canadians with Lyme Disease to work toward common goals: increasing awareness and prevention, ensuring accurate diagnoses, tracking the spread of the disease, and establishing national standards for the care and treatment of Lyme that reflect best practices.

This is not about politics, it is about helping the thousands of Canadian families who have had their lives turned upside down by this terrible disease. We have received strong indications of support from the NDP and the Liberals, and many Conservative Members of Parliament have similarly expressed their willingness to stand behind this important initiative. We are cautiously optimistic that this plan can succeed, but we can’t take anything for granted.

We need you to help make sure that this Bill becomes law. Members of Parliament will be back home in their communities during the week of February 17th and, during this time, we are asking you to meet with your MP to share your story, help educate them about Lyme, and explain to them why Canada urgently needs a National Lyme Disease Strategy. Please go to www.greenparty.ca/lyme-disease to call your MP and schedule a meeting during the February 17th constituency week.

Many of you have already shared your stories with us, and we urge you to continue to do so. Please go to www.greenparty.ca/lyme-disease to write how Lyme has impacted your life of that of your loved ones, and why Canada needs a National Lyme Disease Strategy.

Finally, if you haven’t already, please add your name to the online petition and, if you are able, please print out the paper petition and collect signatures in your community. These petitions will be tabled in the House of Commons, and shared with other Members of Parliament who have indicated their support for Bill C-442.

Thank you for taking action. If you would like more information about Lyme Disease or Bill C-442, please go to www.elizabethmaymp.ca/national-lyme-disease-strategy.

With hope,

Lyme Research Facility in Canada

Allow me to pick my jaw up off the floor!  I can hardly believe it.  The wheels have been put in motion to build a Lyme research facility in Canada.

Rossana Magnotta, CEO of Magnotta Winery, whose husband passed away from Lyme disease in 2009, has created the G. Magnotta Foundation for Vector-Borne Diseases which received charitable status on July 3. 

The research centre is slated to open in 2015 at Toronto's Humber River Hospital. 

Rossana saw first-hand what the lack of research, lack of knowledge, lack of proper diagnosis, and lack of treatment options can do.  We are so grateful to her that she has taken up this cause.

I always knew it would take someone in an important position, with the available funds, and who had been affected by Lyme, to get something like this started. 

Thank you so much, Rossanna Magnotta, for giving Canadians hope.  I hope and pray that this facility gets off the ground smoothly, thrives, and makes Canada a leader in Lyme research and treatment. 

Click here for more information about this exciting news.

FAQ: "So why can't you get treatment for Lyme disease in Canada?"

Hi Everyone!

A while back, I mentioned that I had started to read Pamela Weintraub's book, Cure Unknown - Inside the Lyme Epidemic.  I'm 2/3 way through the book now, and all I can say is that it is excellent!  

 

This book is truly a must-read for anyone who wants to better understand the history of Lyme disease and the controversy surrounding diagnosis and treatment.  Weintraub is a fabulous writer, and she masterfully blends her family's personal story with the science and history behind Lyme.

 

One of the most common questions I'm asked is.....Why do you need to go to the U.S. for treatment?  Why don't they treat it here in Canada?

 

Wow.....that's a hard question to answer in a couple of sentences.  There is an entire history behind that question.  Just read chapter 32 - The Lyme Inquisition:  Doctors on the Run.  That will give you some background into the craziness of this illness.  I sat in a coffee shop this morning and brought the book with me to pass the time, and I just couldn't leave until I had finished that chapter.  Gripping.

 

If you have done any Lyme research at all, you have no doubt heard of Dr. Joseph Burrascano.  He was one of the first big U.S. Lyme doctors to treat chronic Lyme successfully, and also to be hauled up before the New York State OPMC (Office of Professional Medical Conduct) in 1999.  For all intents and purposes, he WON that hearing, and we in the Lyme community have benefitted greatly from his research and expertise since that time.

 

In 1993, Dr. Burrascano had spoken before a Senate committee on Lyme disease, chaired by Ted Kennedy.  His words were sharp and cutting:

 

There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight.  Unfortunately many of them act unscientifically and unethically....They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own.  They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed.  They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions.  They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest....Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy...even if the patients will suffer.  This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.

                                                                                                         Cure Unknown, p. 221

 

I am happy to report that since then, the U.S. has come a long way in its understanding and treatment of Lyme disease.  Yes, there is still a divide in the medical community.  But one by one, states are passing laws allowing physicians to treat chronic Lyme disease with long-term therapy.

 

Sadly, Canada is currently at the spot where the U.S. was in the 1990s.  Physicians are bound to adhere to the outdated IDSA (Infectious Diseases Society of America) guidelines, or else suffer repercussions from the medical boards.  Canadian doctors who have helped a great many Lyme sufferers in the past few years, have been shut down one by one.  Some have chosen retirement, and others have stopped treating Lyme patients cold turkey.

 

I think the reason for this lag in understanding is the simple fact that Lyme disease is relatively new in Canada.  It has been working its way northward for many years, and now it is HERE in full bloom.  But doctors here don't know what to do with it!  They have no training in how to recognize it, diagnose it, and treat it properly.  So, Canadian Lyme patients are forced to flock to the States and pay out of pocket to regain their health.

 

In a nutshell, there's your answer to, "Why can't you get treatment in Canada?"