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Evidence of meeting #30 for Health in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was tick.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Jim Wilson  President, CanLyme
Nicole Bottles  As an Individual
Christine Powell  As an Individual

9:45 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thanks so much to you, in light of what you were just saying, and thanks to Terence for mentioning the company IGeneX. The president of the company, Nick Harris, speaking in 2006, pointed out that part of the problem, in his opinion, is that about 20% of Lyme disease patients never make the antibodies, or they're only present at very low levels. That makes it harder for testing.

Clearly, the diagnostics can be improved. Science is always moving forward. I'm not going to jump into saying which test is going to be better than another. I'll leave that to the medical community.

I just want to say that I am a bit apologetic about being your first witness. I did push back a bit, saying “You don't need to hear from me, we should only hear from experts”, but in consultations with the health committee, I was asked to come forward first. I feel as though it would have been a better hour to hear from somebody who is an expert in the field. All I am is a member of Parliament who thinks that we ought to do something.

I think the structure of this bill will bring a significant shift, federally and provincially. Territorially is not so much of a problem because, territorially, the ticks haven't spread that far. I haven't heard of a territorial case of Lyme. It's spreading very quickly in southern Canada, but we do want to make sure that we're cognizant of our role as a federation and involve federal, provincial, and territorial ministers of health in getting to the best possible federal framework to prevent, treat, diagnose, and understand this disease better. That's going to include all those very complicated issues around why it is difficult to diagnose.

Certainly, we have better treatments than we did 10 years ago. We know what to do in ways the medical community didn't know, even a decade ago. Getting the match of the patient, who needs the help, with the right treatment as quickly as possible is something we can help with by getting this bill through as quickly as possible.

9:45 a.m.

Conservative

The Chair Conservative Ben Lobb

You have time for one brief comment.

9:45 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

With diagnosis, it's so important to establish what you're treating, because long-term courses of antibiotics are really problematic. The World Health Organization recently put out an alarm bell on this, that we're developing resistant organisms. We want targeted treatment that's actually effective rather than broad-spectrum treatment that is missing the mark and perhaps contributing to antibiotic resistance.

9:45 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

That gives me another chance to thank your side of the House, and particularly Terence, for bringing forward Bill C-17, because we shouldn't always believe what the pharmaceutical industry tells us. We should rarely believe it.

9:45 a.m.

Conservative

The Chair Conservative Ben Lobb

Okay. That's great.

That concludes the first hour of our meeting. We're going to suspend for a minute to allow our guests to come up: Ms. Bottles, Ms. Powell, and Mr. Wilson.

9:50 a.m.

Conservative

The Chair Conservative Ben Lobb

Welcome back, ladies and gentlemen.

We're in the second hour of our meeting. We have three witnesses here.

Ms. Bottles and Mr. Wilson are each going to do a 10-minute presentation, and then we'll open it up to questions and answers again.

Mr. Wilson, you may go first, sir, for 10 minutes or thereabouts. Thank you.

9:50 a.m.

Jim Wilson President, CanLyme

Thank you, everybody. Thank you for giving the Canadian Lyme Disease Foundation this opportunity to speak before you today on this very important issue.

Thank you, Elizabeth May, for putting this important bill forward.

Bill C-442 is a very important first step toward developing a made-in-Canada solution to a very serious illness now affecting Canadians in the thousands. Lyme disease is a bacterial infection caused by a spiral-shaped organism called Borrelia, and we have many strains of Borrelia in Canada and North America. Therefore, Lyme disease is a Borreliosis.

The first case was confirmed in Canada in Ontario in 1977. Here we are in 2014, almost 40 years later, and we still do not have a good definition of what Lyme disease is. Tens of thousands of Canadians have been tested for suspected Lyme over the past decades and have been wrongly told they didn't have Lyme, based on a test that cannot look at all strains of Borrelia. Yet all research and testing has stemmed from only that one strain that is recognized in the current testing model. To date, it is that poor test that has defined what Lyme disease is.

It's been known for decades that we have multiple strains. They are not new, and more strains are still being discovered as technology improves. The Public Health Agency of Canada recently published a paper showing that we have a strain of Borrelia called miyamotoi, and we have that coast to coast. There currently is no human blood test for that particular strain of Borrelia that causes Lyme disease.

In reality, Canada has no idea how much Lyme disease is in our chronically ill population. An entire set of guidelines was created in the United States that revolved around that one strain, to the exclusion of all other strains. The U.S. guidelines were adopted overnight in Canada without any discussion except within a small group of individuals from within government and the infectious disease community, who were also in regular contact with that small group of their peers in the United States who created the now infamous guidelines.

We patients and our experts were excluded from those discussions despite our years of repeated requests to be involved. As a result, our hard questions were never considered and never heard. As a result, we have a much larger problem on our hands now.

The first Lyme society was formed in B.C. in 1989 by Diane Kindree. Another was formed the next year in 1990 in Ontario by John Scott, a researcher who has now since published many papers on Lyme disease, its genetic diversity, and how it is transplanted randomly in vast numbers by transplanting the ticks via migratory birds, both on the north-south migratory flyways and the east-west migratory flyways.

Since then, the victims of Lyme disease have been connecting with scientists and physicians around the globe, developing a great deal of expertise. We've pointed out many times since then that testing was flawed and that many Canadians were falling through the cracks—or actually, falling through the gaping holes.

It has come to our attention that there is this amendment to the wording of Bill C-442 changing the term “standard of care” to “best practices”. As soon as Lyme patients from across Canada heard that mentioned on television, we got inundated with calls and e-mails from patients. That term terrifies patients. Many years ago, without giving a fair hearing to the patients and their experts, those poorly contrived, narrowly focused guidelines were imposed and from that point forward were referred to as “best practices”.

People with Lyme disease became not only the victims of the disease, but they became the victims of best practices. The term best practices became the phrase most used in media and literature to simply quiet the discussion, as though some all-knowing group had everything under control. They did not, and we have a huge and growing problem in Canada and around the world. The U.S. government announced last summer that they had been underestimating the number of cases of Lyme disease: instead of 30,000 cases a year, there are 300,000 cases per year.

Patients were too lowly to be listened to, despite our warnings since the early nineties. In one letter sent to us here at CanLyme from the Public Health Agency of Canada, in response to our request to be at the table for policy and guideline discussions, we were told we were just an advocacy group, end of story.

We pointed out that we had expertise in all the necessary fields of science and medicine at our fingertips, and that we had a great deal to offer; still nothing.

We pointed out that we had a vested interest in what they were deciding, as we represent the most significant and important stakeholder—the victim—whose life is directly affected by what they decide; still nothing.

Best practices continued to be imposed upon the system, yet there was no diversity of opinion allowed in their creation. Diversity of opinion is the foundation of a healthy society.

Best practices for Lyme are currently wrong on many levels, yet any physician who dares operate outside of these best practices is immediately targeted and sanctioned. Less than 2% of all physicians are investigated because of their practices, yet almost 100% of physicians in Canada who dared use their best judgment on Lyme issues and not followed the poor best practices have been effectively shut down. The complaints in almost 100% of these cases against the doctors did not come from patients; they came from specialists who did not like their initial diagnoses being questioned. The complaints were specifically that the doctors were currently not following best practices.

Best practices currently trivialize the many symptoms caused by Lyme disease, labelling them in writing as the aches and pains of daily living.

These so-called aches and pains of daily living have been causing people to no longer be able to work or go to school. These aches and pains of daily living have been putting people in wheelchairs, continuing to confine them to bed, or, in an unknown number of cases, causing death.

These are hardly the aches and pains of daily living.

Best practices ignore the fact that thousands of Canadians have been misdiagnosed with having everything from multiple sclerosis, Alzheimer's disease, Parkinsonism, Lou Gehrig's disease, lupus, chronic fatigue syndrome, fibromyalgia, psychiatric disorders, various forms of arthritis, and many more, only to find out later it was treatable, chronic Lyme disease all along.

Best practices have allowed inadequate level-3 evidence to guide health care, when only level-1 evidence should be allowed where lives and health are at stake. Best practices have denied treatment for chronic Lyme disease because the best practice states there is no such thing as chronic Lyme disease.

Each committee member will be receiving a compilation of references to over 300 published papers that show quite convincingly that chronic, active, persistent Lyme disease, beyond short rounds of antibiotics, is very real. Best practices ignore and dismiss this body of research; no discussion allowed. Instead, they made up a name for symptoms after short-term antibiotics, calling them “post-treatment Lyme disease syndrome”, a term for which there is no research to support; no discussion allowed.

We haven't even identified what Lyme disease is yet, and we have not explored all the various strains of Borrelia for their response to treatment and for their broad symptomatology. Yet we have best practices in place and enforced.

Physicians refuse to diagnose and treat Lyme disease regularly by claiming they follow best practices. Tens of thousands of people who chose to ignore best practices now have their life back, including me and my daughter. My son didn't make it, though. He passed away in 2005. I contracted Lyme disease in 1991 in Dartmouth, Nova Scotia. My children contracted their infection in B.C. a decade later, along with other kids in our area, another of whom is deceased as well.

If this committee recommends the change of wording from “standard of care“ to “best practices“, we believe it must be made clear in the wording that there can be no best practices put in place without full participation and approval of the victims and their chosen experts. We cannot continue to allow the current autocratic system to further erode what should be a common-sense democratic process of evidence-based health care. That demands a diversity of opinion.

Bill C-442 is only a start, but it can be the hand that opens the door to a new era of cooperation and discussion. If we simply use the term best practices without open discussion and all-inclusiveness, then that door will quickly close again.

According to Health Canada, we have two million Canadians suffering from conditions of unknown origin, many of which, as I mentioned, are those misdiagnoses given to Lyme patients. We have no idea how many in fact have Lyme disease, but we do know that number is significant.

Those chronically ill people are also the biggest user group of our health care dollars. Many of those people have had their careers stopped short. That affects employers from coast to coast to coast. Still others will be unable to enter the workforce and will instead draw on our public disability payment systems.

There is much more needed to be done. Victims and their experts must be allowed an equal voice at all levels from this point forward.

10 a.m.

Conservative

The Chair Conservative Ben Lobb

Excuse me, Mr. Wilson. We're quite a bit over time. Are you close to concluding?

10 a.m.

President, CanLyme

Jim Wilson

Ten seconds.

10:05 a.m.

Conservative

The Chair Conservative Ben Lobb

Perfect. Thank you.

May 29th, 2014 / 10:05 a.m.

President, CanLyme

Jim Wilson

CanLyme supports Bill C-442, and our preference is that the wording not be changed to reflect best practices over standard of care. The term best practices has been used far too many times to justify the wrong directions.

Besides, what purpose does the term best practices serve other than to make a claim of excellence and highest standards? History shows us the term was used to hide behind or to ignore contradictory research and opinion. Do we need that again? Ask yourself why.

Thank you.

10:05 a.m.

Conservative

The Chair Conservative Ben Lobb

Thank you very much.

Next up, for ten minutes, is Ms. Bottles.

Go ahead.

10:05 a.m.

Nicole Bottles As an Individual

Thank you so much.

My name is Nicole Bottles, and I'm here with my mother and caregiver Chris Powell. l'm 21 years old and live in Victoria, B.C.

I'd like to give you a glimpse into my personal battle with Lyme disease, and also remind you that I am not alone in my struggles. My story mirrors that of so many Canadians whose progression of illness follows a similar path: a mysterious illness; multiple specialist visits; negative lab work; which culminates—possibly years later—with misdiagnosis or no answers at all. The tragedy is that the longer you leave this infection unchecked, the more dire the consequences.

I was 15 and halfway through my grade 10 year, eager to be planning my future. All that changed when, several months into a prolonged illness, I realized one day that I couldn't get out of bed, not even to attend a few hours of school. It was one of the hardest decisions I've had to make.

My symptoms began in 2006 with migraines, breathing problems, and fatigue, and gradually expanded in 2007 to migrating joint pain, dizziness, nausea, weakness, and memory and concentration issues. As my mysterious illness progressed in early 2008, I developed intense pain, swollen joints, exhaustion, severe short-term memory, and cognitive impairment. Within a few months, I was no longer able to walk, remember new things, go to school, or live in a way that could be conceived as tolerable or acceptable.

The culprit, we would later discover, was a tick the size of a poppy seed. We visited many specialists, none of whom could figure out why I went from being a healthy, active teenager to a girl barely able to walk or function.

The months that passed between the initial onset of my illness, the specialists' circuit, and my eventual American diagnosis wasted precious time and resulted in my becoming much, much sicker. At this point, I will most likely suffer permanent damage from the infection.

While doing research, my mom learned about a complex bacterial infection that could wreak havoc with every organ and body system and cause severe neurological problems. All my seemingly unconnected symptoms matched a classic manifestation of this infectious disease, which I had yet to be tested for.

I was so relieved we were on the right track, and I assumed that with a few months of antibiotics I'd be fine. We didn't know about the controversy, but we learned quickly when we brought a checklist of Lyme disease symptoms to my specialist appointments. I had three-quarters of the symptoms at that point.

We weren't prepared for the unusual response that inquiries into Lyme disease elicited. “Lyme disease is very rare” we were told by every specialist as they completely disregarded our concerns. I needed to “start living” with my disability, and essentially get on with my life, which at age 15 was unacceptable.

After months of repeatedly requesting to be tested, I was finally given the ELISA test. Like so many other Canadians, I had a negative test result, which doctors incorrectly assumed rules out Lyme disease, despite my classic clinical symptoms. We weren't aware of the 2005 NIH study at Johns Hopkins University, which showed that the test is less accurate than a coin toss. More sensitive serological testing available from U.S. laboratories like IGeneX later revealed that in fact I did have Lyme disease.

With no diagnosis in Canada, and my health rapidly deteriorating, my family made the difficult decision to seek the help of Lyme-literate experts in the United States, as thousands of other Canadians do. We lived in Connecticut for 10 months of intensive treatment. It was a choice that saved my life and started me back on the road to health.

Four leading experts clinically diagnosed me with Lyme disease and two co-infections. Almost six years of antibiotic and natural therapy are slowly helping me to regain my well-being. I no longer experience seizures and blackouts, and my pain, overall cognitive ability, and abdominal issues have improved.

In spite of my illness, I graduated from high school in 2010. I love teaching knitting classes at my local library; I practice yoga, I sing in two choirs, and I try to “fill the unforgiving minute with sixty seconds' worth of distance run”, as Rudyard Kipling wrote. l've come a long way but realize that I still have a long journey ahead of me.

Over the course of the past five years, l've seen three infectious disease doctors in Victoria. Each stated categorically that I do not have Lyme disease, based solely on the flawed negative ELISA test. They did not take into consideration the 85 years of collective experience from the four U.S. physicians I've seen, who've treated thousands of patients with Lyme disease. One of the ID doctors admitted they had never seen a case of Lyme disease in their 10 years of practice.

The Canadian Adverse Reaction Newsletter in October of 2012 stated that: “Serological test results are supplemental to the clinical diagnosis of Lyme disease and should not be the primary basis for making diagnostic or treatment decisions.” Additionally, the article stated emphatically that Lyme disease test kits are not designed to screen patients or to establish a clinical diagnosis.

Another example of the need for doctor education can be seen in the results of Dr. Bonnie Henry et al from the BCCDC survey of over 1,600 doctors in British Columbia: 63% of the physicians did not know that the “bull's-eye rash” was diagnostic of Lyme disease. The gulf between the medical literature and patients' experiences in their doctors' offices has a far-reaching impact.

The most heartbreaking part of our collective story is the unnecessary suffering. Lyme disease is easily cured in its early stages with $100 worth of antibiotics. Instead, like so many Canadians, l've spent the past six years battling this illness and the medical establishment, while my family has accumulated well over $100,000 in medical bills not covered. Our family home was sold, bank accounts and life savings drained. My father is 67 and is unable to retire due to the financial burden.

A 2006 study from the CDC found that the annual burden of disease, the BOD, when Lyme was treated early in the course of infection, was under $1,500 for only one year. If the illness was left untreated, developing into a chronic infection like I have, the burden of disease jumped to $16,000 per year, every year. The cost of being misdiagnosed is astronomical for our health care system. The cost to patients could be their lives.

There are two standards of care for the treatment of Lyme disease. Patients are abandoned in our current system, because Canada follows the IDSA guidelines that limit our ability to access care beyond 30 days, as stated in the treatment guidelines. The polarity between the IDSA and the International Lyme and Associated Diseases Society, that advocates patients be treated until their symptoms resolve, suggest that the two standards of care need to be re-evaluated.

Lyme disease is a global issue. We need a made-in-Canada framework, such as the regionally specific strategies adopted by Germany and Scotland. The Schmidt report, commissioned by the B.C. PHSA in 2011, investigated the challenges faced by Canadian Lyme patients and outlined a bold action plan. Tragically, none of the eight recommendations have been implemented, but could serve as a blueprint for the constructive change the national framework envisions.

After decades of denial and suffering, and a crippling deficit of knowledge, our country's ability and willingness to fight the Lyme epidemic is at a turning point. Ahead, the changing climate and human encroachment on wildlife habitat will lead to an explosion in tick population. The national Lyme disease strategy, if successfully executed, will set about reconciling the two standards of care into a workable set of guidelines, transforming a toxic situation into a constructive environment for patient care.

When I first became ill, I made a promise to myself that I would do everything in my power to ensure that others would not have to endure life in Canada as a Lyme-leper . l'm asking you to do the same.

Thank you so much.

10:10 a.m.

Conservative

The Chair Conservative Ben Lobb

Thank you very much.

We'll go into our rounds of questions now.

First for seven minutes, Ms. Davies. Go ahead.

10:10 a.m.

NDP

Libby Davies NDP Vancouver East, BC

Thank you very much, Chairperson.

To both of the witnesses, Mr. Wilson and Ms. Bottles, thank you so much for coming. I'm sure it's not easy to come before a parliamentary committee and literally bare your life to us and put it on the table. I really want to say thank you for sharing your own experience, because I think it does help us understand what you're facing.

We have a brief opportunity here; we have this meeting today, and then there's another meeting on Tuesday, where we'll go through the bill clause-by-clause to look at amendments. There's a brief window here to get it right. I'm sure you're hoping that we do get it right, and the information you've provided us is invaluable.

I have lots of questions, and I'm sure we won't necessarily get to all of them.

First of all, Mr. Wilson, you spent a lot of time talking about the amendments. I'm sure you've read the bill. The bill as it is now, in paragraph 3(b), says:

the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, including a recommended national standard of care that reflects current best practices for the treatment of Lyme disease;

You suggested that there will be a government amendment. We didn't hear them from Ms. Adams earlier, so maybe others are coming, but you're suggesting that this paragraph is going to be changed to talk only about best practices.

Are you happy with the way it's written now? It still does say “reflects current best practices”, but you're telling us that really doesn't fit the bill.

10:15 a.m.

President, CanLyme

Jim Wilson

Right. Current best practices are a real sore point with us and patients, because the term best practices implies they were derived and developed with an all-inclusive, diverse opinion, where input came from all directions. The current best practices have been developed by very few people.

10:15 a.m.

NDP

Libby Davies NDP Vancouver East, BC

Are you okay with the way paragraph 3(b) is written? Or do you think that this is going to create a problem? It does say “reflects current best practices”. It does talk about a national standard of care.

10:15 a.m.

President, CanLyme

Jim Wilson

My understanding is that it was going to be amended to just reflect best practices.

10:15 a.m.

NDP

Libby Davies NDP Vancouver East, BC

But are you okay with the way it's written now?

10:15 a.m.

President, CanLyme

Jim Wilson

We would prefer that the term best practices not be used, or, if it is going to be used, it cannot be used in the framework of “current” best practices, because the current best practices are terrible.

10:15 a.m.

NDP

Libby Davies NDP Vancouver East, BC

Okay. Well, that's helpful, because we will be getting to amendments.

Based on what you've said, Ms. Bottles, which has been very helpful, is the whole question of testing. Both of you spoke about this.

I find it so surprising that you had to go so far to get the test you needed to get a proper diagnosis. Is it that the test that you did finally get, and the treatment you got in the U.S.—I think you said you had to live in the U.S. over 10 months—was not available to you in Canada?

10:15 a.m.

As an Individual

Nicole Bottles

The test has to be ordered through a physician. The laboratory is in the States. If you went to your GP or an infectious disease doctor, they would tell you outright that this test is from an unaccredited lab, that the results therefore cannot be trusted. I've taken that test to many doctors and heard the same thing.

10:15 a.m.

NDP

Libby Davies NDP Vancouver East, BC

So when you did get the tests done, and you got the diagnosis in the United States—I think you mentioned from four physicians—when you came back to Canada it wasn't recognized here, is that it? So as far as the Canadian system is concerned, you're not seen as someone who's suffering from Lyme disease, is that correct?

10:15 a.m.

As an Individual

Nicole Bottles

That is correct. They are positive that I do not have Lyme disease.

10:15 a.m.

Christine Powell As an Individual

They don't know what she has, but they're positive that she doesn't have Lyme.