CBC Television The Nature of Things with David Suzuki – Ticked Off: The Mystery of Lyme Disease

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Just sent this out to family and friends….. Hoping this week’s event will further the Lyme discussion in Canada.

 
Dear Family & Friends,
 
I felt that it was important to let all of you know about an upcoming special on CBC’s “The Nature of Things.” I don’t know for sure whether or not David Suzuki’s show will reflect my reality and my concerns about tick-borne infections in Canada, but I trust that he will make a good attempt to thread the needle, to be fair to all sides of a rather emotional and even controversial topic among health care professionals and patients.
 
Show: “Ticked Off: The Mystery of Lyme Disease”
Where: CBC Television
When: Thursday, October 10, 2013
8 pm EDT (or later, if you have access to CBC Manitoba, Vancouver, etc…)
 
Public awareness is important to me for a number of reasons. As you know, we have been through a lot as a family, mainly due to the scourge of lyme disease. In the United States, the CDC (Centers for Disease Control and Prevention) recently updated their estimate of the number of Americans diagnosed with Lyme disease each year from 30,000 to around 300,000. Although the Public Health Agency of Canada has not officially commented (to the best of my knowledge), this revision finally acknowledges a more accurate (but still low, IMHO) view of the expanding health problem that is lyme disease. I have always called it a health care tsunami. And this is where each of you comes in. I don’t want to scaremonger…. but please watch the show, and be mindful of ticks which may be carrying lyme bacteria (borrelia) and other equally problematic co-infections. Ultimately, I hope that public pressure translates to political pressure, which then affects policy decisions around health care research and practices in our country. Many of us have been involved toward this end by doing everything we can to support an upcoming private members’ bill in the House of Commons, Bill C-442, the “National Lyme Disease Strategy Act.” One of my small contributions has been a YouTube video , an “open letter” to Federal Members of Parliament and Senators, encouraging them to support the bill. Others have been lobbying directly in Ottawa. Many have been in contact with their Members of Parliament, urging them to recognize the scope of the problem and to do something about it. We are not doing this just for ourselves, but for all Canadians who are in the path of this growing health crisis.
 
Thank you for your friendship and support.
 
David
 
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Resources:
 

What to give your MP to read

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OK, now I have your attention. For sure, my MP is very literate. All can read. But have they read anything truly useful about Lyme Disease and its impact on Canadians? Or about the policy implications of a growing problem that looks like it is only getting worse?

My federal MP is Craig Scott. He is still fairly new to the job, since he was elected only a few months ago in a by-election, to replace our late, beloved Jack Layton. I have been corresponding with Craig’s assistant, who was open to the idea of a “Lyme Disease Primer” to quickly bring Craig up to speed on the complexities of the illness.

At first I came up with about a dozen articles. Too many. So I pared the list down. The first may offend other lymies, but he might as well see it now in context, in direct comparison to other more robust sources written by people who actually have or who actually “treat” lyme disease. For Craig will ultimately be given the PHAC “Lyme Disease Fact Sheet” when the Bill is being considered. He is a federal MP, and PHAC is the “Public Health Agency of Canada.”

Here is my list of Lyme Disease “reading material.” They can be skimmed in half an hour. A careful read might take an hour. I am not advocating this as the holy grail of lists, just my hurried thoughts about what might help my representative in Parliament to understand my plight, ask intelligent questions, watch out for the twisted arguments of some of the “vested interests,” and come to humane, reasonable and responsible conclusions.

  1. Lyme Disease Fact Sheet by the Public Health Agency of Canada (PHAC)
  2. Basic Information about Lyme Disease by the International Lyme And Associated Diseases Society (ILADS)
  3. Symptoms of Lyme Disease – see link to Word document compiled by Dr. Murakami, Canada
  4. “Our Mad Medical Wonderland: Infectious Lyme Disease is virtually ignored in Canada” – by Helke Ferrie, medical science writer and publisher. Published by CCPA Monitor, June 1, 2010.
  5. “Lyme Disease Goes Under The Microscope” – by Helke Ferrie, medical science writer and publisher.
  6. Letter from Ontario Lyme victims to Provincial Ministry of Health and Long term Care, 2011

There were some pretty major constraints: time, length, availability, complexity. And most of all, if I gave this list to anyone who was willing to invest an hour on focussed reading, would they have a clear glimpse of my world? I hope so. Craig is visiting me soon. It is imperative that our MP’s are educated about the real, tangible effects of Lyme Disease and their co-hosts, the other nasty tick-borne infections. I know many many people who are making solid efforts to do just that. When Elizabeth May’s Private Member’s “Lyme” Bill is introduced and eventually debated, I trust that they will be prepared, and willing to act in unison to avert a growing Canadian health crisis.

Introduction of Lyme Strategy Bill slips one day to June 21st

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Elizabeth May, MP.jpg (graphic from Elizabeth May, MP)

The latest news from Jim Wilson, Canadian Lyme Disease Foundation:

The introduction of the Private Member’s Lyme Bill by MP Elizabeth May, Green Party, has been postponed from Wednesday to Thursday.

It will be held at 11:30 am Thursday, June 21st, 2012 in the Charles Lynch media room, Parliament Hill, Ottawa.

For those who have questions and who want to be there, please contact Elizabeth May’s office at 613-996-1119.

Assuming this takes place without further delay, it should be followed by the tabling of the Bill in The House of Commons. Hopefully lots of supporters will fill the public gallery, as long as there is still room!

After that, the process will be determined by a number of factors. For instance, Elizabeth May is apparently 110 in line for Private Member Business. Since the opening of Parliament last May, there have been something like 60 items brought forward by Members of Parliament. These are at various stages. So the likelihood of the Lyme Bill being debated in 2012 is unfortunately rather slim. On the other hand, 2013 should bring much-needed debates and a public airing of escalating health needs, stories of illness and loss, and vested interests. By then there will be another ten thousand of us after this “summer of the tick,” so the outcry should be that much louder. Bittersweet 🙁

MP Elizabeth May to introduce “National Lyme Strategy Bill” on June 20th

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David Leggett.jpg

I have had lyme disease for almost eight years, and have been bedridden for close to six of those years. For a long time I have been gnashing my teeth at the weak response by our Canadian leaders toward the escalating problem of lyme disease and other tick-borne co-infections in this country. So… it is with great excitement that I can finally pass on some wonderful news for Canadians! All Canadians.

June 20th, 2012 is the day that the following groups of people should pay careful attention to MP Elizabeth May’s announcement.

  1. Those who have lyme disease and are desperately trying to get some help in this country.
  2. Those who have friends or loved ones who are struggling with lyme disease and tick-borne infections.
  3. Those who know someone with lyme disease. (BTW, this group is getting larger as lyme disease continues to become more prevalent).

My prediction is that within a few years it will be difficult to find anyone in this country who doesn’t know someone with lyme disease. For now, the 20 million of you that currently meet the above criteria can help to get lyme disease treated seriously in this country (see end of this post for specific instructions on how to help).

Although Elizabeth May is the Green Leader, this bill is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the massive roadblocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care. Excerpts from Elizabeth May’s statement on her web site give a little more context to her decision to offer support to the growing cadre of Canadians who are ill or disabled with lyme disease.

May will introduce a Private Member’s Bill calling for the development of a national strategy to address the challenges of the timely recognition, diagnosis, and treatment of Lyme disease. The bill also calls for funding for provinces and territories to implement the strategy.

“Lyme disease can be devastating. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease. The public and the medical community need to be educated as to the increasing incidence and range of this disease,” said May…..

“Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive,” said May.

[From Elizabeth May, MP]

Details

  • On Wed. June 20th, 2012 in Ottawa, Elizabeth May is planning to introduce a private member’s bill relating to Lyme disease. Look for a press conference that day and the reading of the bill by Elizabeth to our federally elected MP’s later the same day.
  • The bill is multi-faceted, with detailed timelines that require adherence by the Federal Minister of Health at various stages, including when the conference must be convened, when the health minister would report back to MP’s, timeline for posting new national strategy on the official gov’t website, and many other critical details to ensure that the job is done right!
  • CanLyme has been consulted at length by Elizabeth to make sure patient’s interests will be heard.
  • Elizabeth is allowed to introduce one private member’s bill in her four year term. She has chosen to help Canadians with Lyme disease get their right to health care back.

How can each one of us help Elizabeth pass this bill?

We ALL need to do the following and ask for friends, & family wherever they live in Canada to do the same to support you and get this National Lyme Strategy Bill passed:

  1. Find out who your federal MP is. Click here.
  2. Contact your federal MP and if at all humanly possible set up a face-to-face meeting.
  3. Tell them your story, and how lyme disease affects you, your family or your friend(s).
  4. Tell them that you know others across Canada in the same predicament (like me, for instance)
  5. Tell them that you, your family or friend(s) are being denied the right to health care.
  6. Ask if you can count on their support to get this bill passed.
  7. Make sure your MP knows this is not just a ‘Green’ party bill, it is a bill that could affect every single Canadian including themselves, or their loved ones.
  8. Remind your MP to vote with their conscience as this is a private member’s bill; no party vote needed.
  9. Contact friends, family, acquaintances, people in your local communities. Let them know how important support is. Ask them to contact their MP.

If you need further information, check out Elizabeth May’s web site. Also, use my contact page to ask for assistance, or to find out how to include your picture in the display of Canadians suffering with lyme disease – this display will be part of Elizabeth May’s press conference scheduled to occur before the bill is introduced in parliament on June 20th.

Is the Canadian Lyme policy mindset beginning to change course?

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I haven’t written for a long time. I am often gripped by the futility of fighting against lyme disease, against the powers that make and enact policy decisions which affect my health and helped put me in bed, my own prison. And sometimes I wonder if I ever really make any difference? …..

OK, enough of the self-pity, on to some more uplifting signals 🙂

It appears to me that lyme activism in Canada is growing. The unfortunate yet inevitable increase in the number of lyme-infected Canadians has a powerful impact – more and more people are getting louder and louder. And more organized. And more impatient with the “minimalist response” status quo. And more familiar with the media, politicians at all levels, and government ombudsmen.

It used to be that no one would listen. We were deemed “crazy” and “misinformed” and “ignorant” and “hypochondriacs”. Now we only get called these things half the time 😉

Most of the time The Ombudsmen will listen, politicians will at least offer some support, and even doctors may be more willing to listen. And some media outlets (especially in rural areas whose populations are embedded in prime tick habitats) are putting the lyme issue out there.

Unfortunately, lyme patients saying “enough is enough” brings out some very defensive reactions. Circle the wagons. Circulate rumours (such as that IGeneX has failed its certification). Suppress reports which indicate that there is a problem. Even communicate misinformation or “quarter-truths” to the public.

One of many lyme advocacy projects in Ontario was a May 2011 letter writing campaign to the Minister of Health and Long Term Care. Well over a thousand were sent in by “snail” mail. Unfortunately, response letters were delayed and very weak and patronizing.

Another project is currently underway by Sarnia-Lambton area MPP Bob Bailey. He is spearheading a petition to present to the Ontario Legislature this fall.

The wind appears to be shifting. The ship is slowly changing course. Go lymies!!

Defending Canadian Health Care: my perspective as a lyme disease patient

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In spite of the rhetoric in some quarters, it is important to maintain and improve health care in Canada. Especially improve when it comes to lyme disease recognition and care. When I saw the following notice I wanted to contribute in some way. Granted, the focus was on a broad swath of health care needs, but lyme disease is a rapidly growing concern for Canadians.

Hon. Ujjal Dosanjh, Health Critic for the Official Opposition, will be hosting a Special Town Hall meeting “Defending Health Care” on January 23rd in Toronto. He will be joined by Hon. Carolyn Bennett, Member of Parliament for St. Paul’s.

This Town Hall on the future of Canadian Health Care will continue a national dialogue on how we can best defend, strengthen and improve our health care system over the course of this important decade.

I believe passionately that now is the time for innovative public solutions that preserve our Medicare system and defend the principles of universality and accessibility. We need increased support for family caregivers found in our Family Care Plan. In the long run, we need to address other challenges, like the increasingly prohibitive cost of medicines by bringing pharmaceuticals as well as home care into the Canada Health Act.

The federal government has the jurisdiction and the responsibility to play a leading role in proposing these solutions. The federal government must be committed to defending Canada’s health care system against those who would in the name of protecting health care make it less than universal and public.

Now is the time to ensure that Medicare survives and thrives for generations of Canadians to come.. Canadians who believe in Medicare can no longer, in good conscience, remain silent.

Working together, we can defend and improve health care in Canada for the benefit of many generations to come. I need your ideas and insight into how we can move forward together on this key national priority.

I encourage all those who support our public health care system to come out and join us at this town hall.

Best regards and see you at the Town Hall,

Hon. Ujjal Dosanjh, PC, Q.C., M.P.

My response below perhaps wasn’t that well thought out, but I wanted the Health Critic to know about our situation, and how the health care system has ultimately impacted on our journey through lyme disease. A slightly edited version follows:

—–

My name is David Leggett. Until November 2004, I was a secondary school principal in Toronto. I am currently completely bedbound (24/7). My wife and daughters look after me, and I have limited support from caregivers while my wife is at work. To make a long story short, I have lyme disease. Treatments failed, and I have been in bed for more than 4 years. This seems inconceivable, but even more inconceivable has been the response of the medical and health care system to my plight. Doctors will rarely treat lyme, and are not equipped to deal with the many thousands of Canadian patients who have lyme. The testing at the national labs (Winnipeg) is notoriously unreliable. In spite of this, assurances have been continuously given (esp. since 2006) that the Public Health Agency of Canada has the interests of lyme disease patients in mind and that all testing and information to doctors is sufficient. IT IS NOT!

Health Care in Canada not only needs defending, but needs some specific improvements:

  1. Access to health care has not helped me, since doctors didn’t recognize my health issues. I went from doctor to doctor, specialist to specialist. No one could help. After over a year of being off work and getting sicker and sicker, a sharp doctor did recognize symptoms and referred me to one of the few doctors in Canada willing to brace himself against the onslaught of the Colleges who do not approve of lyme recognition and treatment.
  2. The two-tiered testing (Canadian ELISA and Western Blot) is an inappropriate standard which simply causes more suffering by missing the vast majority of those truly infected. Very few will deal with all the people with lyme disease who are missed and end up being simply shuffled off to the side.
  3. A significant number of lyme sufferers and their families have chosen to sell their homes and assets, and head to specific U.S. physicians to get treatment. This is extremely costly, and is where our Health Care system is going if we are not careful. Lyme is an escalating disease which currently affects somewhere near 200,000 a year in the U.S. (as per the CDC), and likely close to 10,000 per year here in Canada. Many in positions of power scoff at this Canadian estimate, but when you get to set the testing standard, you get to dictate the results… Meanwhile, many thousands suffer.
  4. My wife (primary caregiver) gets some support, and gets little sleep, burning the candle at both ends. My care is very time-consuming and stressful. I wish that she could be freed from the burden that I feel I cause for her. I am thankful for family and friends who help us in so many ways, but greater professional assistance would help. A Family Care Plan could help in this regard.

Thank you for listening. My wife was unable to attend the meeting in Toronto on Sunday, so we wanted to say our piece. I have frequently been in touch with Jack Layton – although the response was supportive, ultimately nothing substantial has changed. Will the Federal Liberals put Canadians in need of lyme diagnosis and treatment on the front burner??