Thank you, Mr. Chairman, and thank you to all members of the committee. I will not trespass long on your time, because we have with us people I want you to hear.
I wanted to set a bit of context. Some of you were in that Parliament—Don, certainly—in June 2012 when I first tabled Bill for first reading. We have had tremendous non-partisan, all-party support from the beginning. The bill was supported in the House of Commons unanimously and went to the Senate, where it was also supported unanimously.
The bill's nuts and bolts required a conference to be held, bringing in medical experts, federal-provincial government health departments, and people from what we now think of as the Lyme disease community, people such as some of the witnesses before us today, Sue and Jennifer.
I wanted to give you a sense that the conference was an extraordinary success. Our public health officer at the time, Greg Taylor, was very strong in saying that we needed to do more. We've been failing our patients. We've been failing people with Lyme disease across Canada.
I wanted to say briefly that now that the framework has been published, the committee's work for two days this week is very important. I know you'll hear evidence about how serious Lyme disease is, how fast it's spreading, and frankly, the hell on earth it has been for patients with Lyme disease. One of my constituents went to 18 different specialists before finally thinking, “Okay, maybe we'll try going to the States,” and then finally got some help.
The bottom line here, I believe, is that any Canadian experiencing Lyme disease should be able to get treatment in Canada, and we're not there yet. The herself doesn't have a magic wand, nor does she have the jurisdiction to make it so, but the framework gives us some tools. I wanted to point us in that direction, as the positive work going forward.
In the framework document, in appendix 1 is the federal action plan. I wanted to turn your attention to point 2 on education and awareness and point 3 on guidelines. Both of these sections point us in the direction of finding ways to educate medical professionals.
Medical professionals are a very educated bunch. I have the deepest respect for the doctors of this community. In fact, the Canadian Medical Association endorsed Bill . Their letter endorsing it made the point that Lyme disease is an extremely difficult disease to diagnose. The advice, which I agree with in this framework, is that the diagnosis is primarily a clinical diagnosis. In other words, lab tests are quite unreliable, no matter where they are taken. False positives and false negatives are problems.
What we need, when someone presents with a weird range of symptoms, is for every medical doctor in Canada, every family doc, to think to themselves, “I wonder if it's Lyme disease.” If you respond quickly and with early treatment, if it is Lyme disease, this person will be restored to full health, but if you delay, thinking that maybe it's something else, you can actually end up having the disease become much more serious and last much longer.
Here are the two pieces I'm referring to. Under “Education and awareness,” it reads:
Develop a national tick and Lyme disease education and awareness campaign
—this is the federal commitment—
in collaboration with partners, that addresses...Recognition of Lyme disease symptoms [to assist] front-line professionals [to] perform early diagnosis and treatment
Then, under “Guidelines and best practices,” in point 3, it says:
Work with international public health partners
—because, by the way, Lyme disease is spreading very quickly in Europe—
to share best practices and disseminate domestically
These are areas where we don't yet have a clear sense of how we're going to do it. The commitment is there. It's clear that we can't polarize this issue with good guys and bad guys. That's not appropriate. Everybody here is a good guy. Everybody is trying to figure out what to do, to use the right tools, and to start ensuring that every Canadian who experiences Lyme disease is helped.
There are many people who have had it for a very long time, and those particular patients are a represented group where the research money will be very helpful. We have $4 million for research. That money, I hope, will go towards finding a vaccine but also towards finding ways to help people who have what's either described as post-treatment Lyme disease syndrome or chronic Lyme disease. I don't want to get involved in that ideological divide. I just know there are a lot of people in wheelchairs who need help.
I've taken longer than I actually told you I would, Mr. Chair. You said I could have five minutes. I said I wouldn't need that, but at 4 minutes and 43 seconds I will stop, and I thank you for your attention.
Thank you very much. I'd like to say that, speaking as a patient advocate, I'm not going to read my brief because I really want to speak from the heart here. On behalf of people who have Lyme disease and the people who end up looking after the people who have Lyme disease, we're really concerned that the framework at this point doesn't have enough patient representation.
Our expertise is really looking after these people who are very, very sick, so we have some concerns about all three of the pillars. Just as an example with surveillance, when I looked at the case definition, I was going through it, looking at it, and saying, “You know, this is looking pretty good. It's sure looking a lot better than it used to look.” Then I got to the end and I realized we only had nine provinces.
The way we undertake the surveillance is going to make a very big difference to what we see when we come out at the other end. We really need to have patient advocates pointing out some of these things that are really important because it does depend on where you are in Canada. The education and awareness needs to be locally adapted. As an example, in coastal B.C., you run into the Lyme disease tick generally in the wet winter months, and it's exactly the opposite in Ontario, so we need to have recognition that Canada is a very big country, and it is different from one end of the country to the other.
When we have this sort of standardized education, it's very important that we don't just rely on the IDSA guidelines. We need to make sure that Lyme disease as it exists in Nova Scotia is recognized, and I don't actually expect it to be exactly the same by the time we get to B.C.
I think the most important thing for the patients is that the IDSA guidelines made no attempt to apply themselves to Canada. They're looking at it from a very different perspective. We need to recognize that across the country we have variants of Lyme disease. The IDSA guidelines right now are confusing what's called surveillance criteria with diagnosing the patients. Surveillance criteria are very important, and those are the ones that need to be standardized, but the actual diagnosis and treatment of the patient don't have to rely on surveillance criteria. The IDSA guidelines fail to recognize a lot of research that shows that there is persistent infection. I do want to point out on the plus side that the really important part is that they recognize that the Government of Canada has a very important role to play.
The problem I see now with the national research network is that it stresses that you're going to consult with the provincial and territorial health regulatory authorities, but unfortunately, these are the people who have a history of minimizing Lyme disease. If you're not going to include the patients as equal partners, I see a problem. We know that early cases of Lyme disease continue to be missed because often doctors haven't understood that you can't take the serological result, especially early in the disease. We know that we have a lag time, and we're going to continue to have new cases of Lyme disease.
I'd like to quote a Canadian doctor and a professor who says, “...historical precedent repeatedly illustrates that diversity of thought and opinion, dissonance with the status quo, and openness to exploring new ideas are what moves medicine forward.” That's Dr. Stephen Genuis.
The Lyme disease network right now appears to be set up by restricting to the status quo, and science is the best tool that we have. There's no question that we have to use the very best science we have, and yet the guidelines are missing large chunks of science. If we rely on the same Lyme authorities that landed us in this situation, without inviting divergent opinions to the table, we're going to delay a Canadian solution to a Canadian problem that's continuing to get bigger.
Now, the infectious diseases doctors are tasked with reducing the use of antibiotics, and rightly so—there's no question there—but this does very little to support the family doctors, who are left with very sick patients. I'd like to close just by giving two very recent examples: one of them was last Friday, and the other one was as I was getting ready to leave for the airport yesterday.
Last Friday I was walking down the hall, and one of the building maintenance people stopped. I said, “How did it go? You went to the doctor, and how did it go?” He said he was afraid that the doctor looked at his girlfriend, who has a diagnosis of fibromyalgia, and said they would not make a referral to one of our highly respected Lyme-literate medical doctors. The basis of the refusal to send this very sick person for an opinion, that perhaps this could be a clinical case of Lyme disease, is that Lyme disease is a fad illness. What happened, the end result, was this very sick patient was sent home with physician-prescribed fentanyl. The poor lady is sitting on the couch, she's unable to work, she's in unbearable pain, and the response was to give her fentanyl.
The second story, which was on Monday, is of a dear friend of mine who got Lyme disease in 2008 in Germany. She got positive first-tier when she came back to Canada—and that was a positive C6 peptide—but they did a Western blot for the Lyme disease you'd get in the United States, and she didn't get a positive there. So she was considered wholly negative. Now her family doctor was listening to all this information about Lyme disease research and the framework, and he said, “Great, I'm going to phone up. I'm going to make an appointment for you to see the infectious diseases doctor because you're a classic case of somebody who's been missed.” She was refused the appointment with infectious diseases because she doesn't have two-tier positive serology.
These people really need to be dealt with very differently. The rigid system, which won't even see the patients unless they have two-tier positive serology, risks now being rewarded with more funding. If the funding is going to the same people, then the treatment isn't going to be any different. The same people who have denied the consideration of Lyme disease are the people to whom the research funding seems to be flowing. So at best, this framework is a baby step in the right direction, but it risks cementing in place the same rigid structure that failed patients for the past decades.
My name is Sue Faber. I'm a registered nurse by profession, with a majority of my experience as an ER nurse. I'm a Lyme sufferer, advocate, and married mother of three daughters who also have Lyme. My husband Andrew has been my rock and has focused me on this unrelenting, exhausting, and often overwhelming journey, which feels to me like mission impossible.
My personal Christian faith is my anchor, and my belief is that God often chooses to use the weak and weary to accomplish his purposes to reveal his power in the midst of what feels like a continuous raging storm.
I'm calling on each of you here today to lace up your sturdiest pair of well-worn hiking boots and join me as I take the lead for just a few moments as your guide. What qualifies me to speak to you today isn't a Ph.D. or a position of authority. My qualifications come from a personal journey into the hazy suffocating shadows of what I would like to call the Lymelands, where those affected by the same plight must band together and unite to survive.
We are the weary, the wounded, and the sick. We find each other, as we have no choice but to look for answers together. We share an illness which is insidious, disabling, and destructive. It is a disease that comes like a thief in the night to snatch away childhoods and steal careers. It is a disease that cripples active contributing Canadians, bankrupts families, and breaks down marriages. It is a disease that, in some cases, has driven Canadians to end their own lives.
I ask you to take the time to read the three Lyme letters, which I have been given permission to share in my brief, to give you a clear and disturbing picture of the reality of the suffering of Canadian adults and children alike. Jennifer and I have been brought to tears as we receive regular phone calls and read letters received through the Lyme letters campaign that I started in January of this year. We now have over 2,500 letters.
These are letters that I am waiting to hand deliver to , and I truly trust that she will open her doors to receive them very soon. I believe I see Jordan Crosby here today from the minister's office. I hope he will reach out to me and that we can make arrangements for these letters to be passed to Minister Philpott, and for us to speak to them personally.
Parents are horrified and panicked as they watch their child's health disintegrate in front of their eyes. They are writhing in pain, collapsing on the floor, screaming that their brain is on fire. They have paralyzed limbs and bizarre rashes. When they take their child to an infectious disease doctor with positive Lyme tests from the U.S. or even Europe, these patients are flat out told that they are wasting their time and energy on garbage tests. Some families have been messaged that their precious children are being accused of faking or even self-inflicting their symptoms.
We have heard of an infectious disease doctor recently demanding that a child get out of their wheelchair and walk, despite their legs buckling beneath them. Parents are being pressured to commit their sons and daughters to psych wards. Parents are being threatened that they're painting their children with the same paintbrush, insinuating a Munchausen by proxy mental illness. Parents are being forced to do their own research and to sell their possessions to cover the costs of flying their disabled child to expert clinicians outside of Canadian borders. What happens to the families who don't have the money and who don't have the resources?
The reality is that these children indeed are treatable. They have a multisystem infectious illness, triggering an autoimmune encephalopathy. With appropriate and prolonged treatment, which often involves multiple antibiotics as well as other therapies, these children can regain their lives and their hope.
Many parents across Canada believe that their children contracted Lyme disease through pregnancy. I am one of those parents. I will never forget the day I happened upon an article on gestational Lyme disease. I had just been diagnosed with chronic Lyme in Canada. As I read this particular report, I was shocked. Did this mean that Lyme disease could be passed from an unsuspecting mother to her unborn child? This particular case report listed a diversity of clinical manifestations of congenital babies. I started completing a mental check box for each of my daughters. It all started to make sense, and my gut instinct compelled me to get my children tested. With all three girls, Lyme Western blots came back positive from a lab in the U.S., with undeniable evidence of exposure to Lyme. It made perfect sense to me.
All three of my children have been sick since birth with all kinds of unknown ailments that are cyclical in nature—fevers, joint pain, headaches, rashes, abdominal pain, vomiting, anxiety, and OCD. I was an emergency room nurse, and I didn't know what to do, and the doctors kept saying, “We don't know what it is, but just keep plugging along. You're a good mother.”
Later on, one of my daughters actually tested positive—here in Canada, using our two-tier serology—for a European strain. Funny enough, she never travelled to Europe. I also tested positive for a European strain. Also, members, I want to say to you today that I had to lie on the public health requisition to get her tested for the European strain, because the only way they would test her blood is if she had recent travel history to an endemic part of Europe. And guess what? It was positive.
I'll never forget the day I shared my daughter's positive Canadian serology results with my infectious disease, ID, doctor. I looked her straight in the eye and asked her about congenital transmission. She said she knew about case studies on maternal transmission, but she wasn't an expert in the area. She went on to tell me, in her words, that she certainly admired the fight I had undertaken on behalf of my kids. She said I was doing the right thing, and that I contradicted everything that people had been taught.
So where is the reality? I don't know.
To this day I am completely disgusted and frankly outraged that, despite diagnosing me with chronic Lyme in Canada, this expert, whom other physicians look to as an authority on Lyme disease, had been coldly silent to making me aware of the possibility of mother-to-child transmission. I had to figure it out all by myself, without any support from any Canadian physician.
There was a very recent CBC radio interview with Dr. Caroline Quach, who is the president of AMMI of Canada. Dr. Quach was interviewed as an expert in the subject matter and was asked directly by the radio host whether Lyme disease can be transmitted in the womb. Her response was that there is no evidence that this is actually happening and there hasn't been any evidence in humans that this has happened, at least none that has been reported in the literature. She flat-out denied evidence of congenital Lyme transmission. She was speaking out as an expert, and thus her words would hold considerable weight and be seen as trustworthy and an authoritative source of information by her medical colleagues.
I ask you, honourable members of this committee, does this not disturb you as it does me? Denial of truth cannot be accepted or tolerated, not in the past, not in the present, and certainly not in the future. This denial must stop now, and it is clear to me that when it comes to Lyme disease, infectious disease doctors have an alternate agenda, which must be examined. They have clear biases, which must be questioned. They must be held accountable for their actions.
My story gets more disturbing, because when I reached out to my local public health unit to discuss my concerns of congenital transmission, instead of being granted a face-to-face meeting, I was mailed a letter, which stated that both I and my daughter would not be counted or reported as positive Lyme cases in Canada. You see, we presented a rather inconvenient truth to our public health authority, so instead of acknowledging and engaging, they dismissed, denied, and erased us from the record.
Just to reiterate, the number of positive Lyme cases in 2016 did not include me or my daughter, for reasons that escape my comprehension, without any meaningful rationale, and certainly—in my mind—with completely unethical behaviour.
I was also told in the same public health letter that there was no scientific evidence of congenital transmission, so not only AMMI but also our public health authority denied the reality. Could it be that the infectious disease doctors in public health who take a lead on this illness deny the very existence of scientific research that contradicts their rigid dogma?
Yesterday, Jennifer and I had the opportunity to speak with Dr. Njoo, deputy chief public health officer. We asked Dr. Njoo why congenital Lyme transmission had not been mentioned in the federal framework, considering the available body of scientific literature and evidence, including pathology reports, case studies, and an entire chapter written and dedicated in a reference medical textbook, which I have brought with me today. It is quite disturbing that this textbook is no longer available as a reference resource, and in fact Jennifer and I had to find it through used book dealers on Amazon. I will be leaving a copy of this edition with the committee clerk today.
I ask that this textbook be available to the committee and anyone else who wants to learn about the devastating reality. I hope this textbook will be permanently archived as clear evidence of what I have shared with you today.
I also ask Dr. Njoo why the Public Health Agency has not mentioned the June 4, 1998 Canada Diseases Weekly Report, which is included in your brief. It states: “Transplacental transmission of B. burgdorferi has been documented and may be associated with an increased risk of adverse pregnancy outcome.” Why has nothing been done in 29 years to address this concern? There is no Canadian research, no further mention, nothing. Our public health officials are fully aware of this information, yet they choose not to share it. In their silence, they are allowing more children to become infected.
I have more to say, but I am going to close because I realize that my time is up.
Thank you for joining me on this uphill battle. We are still far from the top. I know we must climb to the top, because at the pinnacle of this mountain we will experience a freedom and be able to clearly see the truth. Climbing to the top can be accomplished only by reliance on and trust of those who climbed this mountain, the patients. They, and only they, can speak to their journey with clarity and insight. It is devastating that this strong and authoritative voice was completely left out of the federal Lyme framework. In fact, the voices, testimonies, and pleas of thousands upon thousands of Canadians were clearly blacked out, shut out, and, in essence, ignored.
Despite this failed framework, I still have great hope that this isn't the end of the story, but rather a fresh beginning, a reawakening to the reality of the Lyme crisis, which continues to sweep across our nation. Your decisions and actions on this issue will directly impact the fate of millions of Canadians.
Hello. My name is Jennifer Kravis. I live in Oakville, Ontario. Thank you for having me here today.
I used to be a lawyer and a bank executive, but 11 years ago, at age 36, I was suddenly debilitated and bedridden by a mystery disease that took me hundreds of thousands of dollars and five years to determine was Lyme disease.
I had to go to the U.S. and pay even more money. I spent two years getting continuous antibiotic treatment, including a PICC line, which gave me my quality of life back, and my family's as well.
I still cannot work, but I advocate for Lyme disease now. There are five people in my family with Lyme, and my dog has it as well, but my dog was treated promptly with compassion and care, and he got five months of antibiotics, and he made a full recovery. My niece got early treatment with a bull's eye rash after seeing four doctors . The rest of us—me, my mother, and my two daughters—are permanently affected. As a mother, I live with the guilt and horror of discovering I probably infected my two kids. They both have chronic Lyme and multiple co-infections. One has encephalitis causing neuropsychiatric issues and arthritis in the spine, and she's 14 years old.
In the last week I've spent many hours thinking about what I could possibly say to you in 10 minutes to convey to you the suffering, the despair, the abuse, the financial ruin that is sweeping this country.
I can talk about my full story. I was financially secure, a Bay Street professional. I had money, connections, and access to the very best health care, but it did not protect me and my family, and it will not protect you.
I could talk about the 40,000 Canadians who signed our petition or who wrote thousands of Lyme letters for , letters that bring us to tears on a regular basis. But on Thursday you will be told that petition comments are really about ticks, and stories are anecdotes not evidence.
I could talk about the independent, professional benchmark survey we did in Canada to ask how many people were affected by Lyme disease. The survey asked, have you or someone you know in Canada been diagnosed with Lyme disease? The answer is between 2.8 million and five million people.
Public health numbers are a joke because people are denied testing and not counted. People get false negative results, and they are not counted. People get positive results. They are told they are false, and they are not counted. People get positive tests from international labs, and they are not counted. Finally, those who, by some miracle know about Lyme, convince their doctor to order tests, pass the first tier, pass the second tier, prove they were in an endemic area, get to the doctor in time, get a bull's eye rash, and have the doctor visually inspect the bull's eye rash. Even the majority of those cases are not counted, just as Sue Faber talked about.
I thought about asking questions. Why has public health ignored 35 published, peer-reviewed tick studies compiled over the past 27 years by an Ontario researcher named John Scott? Why has public health not warned first nations that they are living in hyperendemic areas like Kenora, Ontario, where John Scott estimates ticks have been established for 50 years? Why have our doctors never heard of co-infections?
My 13-year-old daughter has Rocky Mountain spotted fever. This is a disease that could be fatal in up to 75% of untreated cases. I had to fight for this test, and when it came back positive, my GP fired us.
This leaves my going back to my original question, which is, what could I possibly say to you to convince you something tragic, shocking, and disturbing is happening in plain sight?
I decided I would speak about the truth, the real truth, the truth that nobody wants to talk about or believe. The truth is the bill was great, but the final framework is useless. It is inaccurate. It's going to cause harm to Canadians. The process was mangled by some powerful, unethical, and self-serving interests.
The truth is we have a massive global pandemic, one that is not easily prevented by pulling your socks up and staying in the middle of the paths. The truth is people are so desperate to get life-saving antibiotics they beg their vets, and they beg their doctors to try to get six weeks of antibiotics in a desperate attempt to avoid lifelong disability. The truth is there's a secret network of Canadian doctors who risk their licences to treat their patients. The truth is Lyme patients are horribly abused by doctors, but if they file a complaint to the college, they are harassed and blacklisted. The truth is millions of Canadians, including first nations and children, are walking around with the wrong diagnosis. The truth is U.S. doctors are getting paid by us to learn about this disease, instead of our own doctors gaining this knowledge and expertise. The truth is we have thousands of parents who live in agony and despair, hiding in their homes with sick, disabled children who scream and cry, have seizures, and are in horrific pain. The truth is people with bull's eye rashes in every province every day are being turned away and denied treatment, sent home to wind up disabled in excruciating, unrelenting pain.
Some doctors say, “I'm sorry, I can't help you; I will get in trouble and I have to protect my family over yours.” Some doctors say, “I'm not allowed to help you, but if you go to the U.S. and get treatment, you will get better.”
Many doctors say, “I guarantee you don't have Lyme disease” and, in fact, they are correct, because the system at every stage guarantees it's virtually impossible to get a Lyme diagnosis. When the Canadian test is negative, it is called gold standard; when the test is positive, it is called false; and when the test is from out of the country, it is called garbage, except if it's negative.
The truth is that surveillance is a sham and a waste of money, because ticks are dropped everywhere by migrating birds; and surveillance is not progress. It is a tool used to deny the disease. The truth is that some people don't get their Lyme test back from the national lab for months, and too many people are told their test results are lost.
The newest weapon in the Lyme war is anti-microbial resistance, which denies very sick Lyme people life-saving treatment or the dangerous side effects of antibiotics. The truth is that people with arthritis, syphilis, Crohn's disease, tuberculosis, relapsing fever, rheumatic heart fever, rosacea, MS, and acne are given months and years of antibiotics without hesitation; and cancer patients are given the choice of drugs with side effects so dangerous they can kill them.
Let's review the so-called facts of Lyme disease that we are told by public health and infectious disease specialists: one, our testing is fine; two, ticks must be attached for 24 to 48 hours to transmit the disease; three, only black-legged ticks carry Lyme; four, your risk of contracting Lyme is very low, so don't worry, and virtually zero outside of endemic areas; five, you can't have Lyme if you don't get a bull's-eye rash; six, two or three weeks of one antibiotic is all you need to be fully cured; seven, if you have any new, lingering symptoms, you have a new disease, which is called post-Lyme-treatment disease syndrome, which looks and feels exactly the same as the infectious disease you just had three weeks earlier; eight, we are told there is no scientific evidence of persistent infection or that long-term antibiotics help, and we are told there's no scientific evidence of congenital transmission.
We are told, “We don't know what all these people have, but it's not Lyme” and we're told that people fixating on Lyme could miss the chance to get a real diagnosis.
Finally, we are told other countries' tests, all of them, are invalidated, from for-profit labs, not FDA approved, purchased positives, garbage, or run by profiteers and quacks. But the truth is every single one of those sentences is untrue.
The truth is that doctors, patients, and the public are being misled, and we need you to do what no one has been able to do—despite fighting for decades—not advocates, not Bill , not celebrities, not politicians, not journalists, and not even an international organization of medical doctors and scientists.
We need you to ask yourselves if it makes sense that tens of thousands of Canadians have a shared delusion about their own health and welfare, their body, and their symptoms? Does it make sense that tens of thousands of kids who've never met are suffering from a shared psychiatric disease that causes them to fake symptoms? Does it makes sense that previously rational, healthy adults are conspiring to obtain antibiotics, which if abused, give you a stomach ache and a sunburn. Does it make sense that desperately sick people bankrupt themselves for treatments that provide no relief to them?
We need you to ask the questions that always reveal the truth. Who benefits or profits from the denial and suppression of these diseases? Who benefits from patients missing the early cure with a cheap generic antibiotic, and wind up labelled with fibromyalgia or an incurable neurodegenerative disease like MS, ALS, or Alzheimer's. It's not patients, it's not taxpayers, it's not families or kids, it's not businesses, it's not our health care budget, it's not family doctors or clinicians, and it's not our economy.
The truth is that it is too late for me and my family, because there is no amount of money, drugs, connections, or treatments that will restore our health. We are here for you. We are here for all those Canadians who are so sick and in pain and feel abandoned and are on the verge of suicide. We are here for all those Canadians who will be unknowingly struck down in the parks and in their backyards. We are here because we cannot bear to hear one more story of a child with a bull's eye rash being sent away to end up disabled.
The truth is that Canadians desperately need you to stand up and do the right thing. We need your help. Please help.
I have speaking notes, but I won't necessarily read from them. I want to provide a bit of context about where I'm coming from. I have had Lyme, and like many others I had to seek treatment in the United States to return to health. In this case I'm speaking as a scientist, and I'm going to focus on the science of the Lyme disease framework. I apologize for the people who are now thinking they have to sit through nine and a half more minutes of science, but I'll keep the science part light.
My feeling, in reading the framework document—and in being on the conference planning committee and presenting at the conference—was that this framework fails to provide the leadership that the scientific community and the medical community need. It completely fails patients. I'm going to go through the reasons I'm saying this.
The first reason is that the framework doesn't have a place for the patient voice. The patient voice did show up at the conference, and it was a spectacular conference. It was the first time we had brought together patients, scientists, and the medical profession. All the voices were heard. They were difficult conversations, but they were respectful conversations, and I felt we were making progress. Unfortunately, none of that material ended up in either the draft or the final framework, which were fairly similar, with some differences in window-dressing.
Without the voices of the patients, we don't know what's important and anything going forward will be more or less meaningless. There's too much of a disconnect between the people who need this framework and the way the framework currently exists. I would also point out that having the patient front and centre is intrinsic to the ethical guidelines for both medicine and science. This framework fails to meet either scientific or medical-ethical guidelines.
I'm going to talk briefly about science and the framework. The term “evidence-based” is tossed about quite liberally in the framework, but it is misused. What evidence- or science-based means is not that someone somewhere has done a study, and you like the results and they're convenient, and then you just declare the results to be correct. Rather, it means that you take all the relevant peer-reviewed literature and you ask whether it all says the same thing. If it doesn't say the same thing, you have to figure out why. You don't just ignore the stuff you don't like—that's the antithesis of science.
There's been an enormous history of cherry-picking within the whole development and management of Lyme disease in Canada. We've heard stories of that so I won't go into it, but it feeds into every aspect of the problem, from how long it takes a tick to transmit the disease to whether or not long-term antibiotics will help the patient. Really, we have to do better with science—it's the only tool we have. We have to do proper science, and that also means ethical science.
I have a list of science glitches, errors in this document. I'm not going to go through it, because lists are boring, but I will point out that the first sentence of the document is factually incorrect, and so is the second. That really isn't a good start. The first figure features the dots of doom that everyone in the surveillance section at the conference agreed to—this was the one section where people achieved consensus. There was consensus that it was not a good way to represent data, but still it shows up in the framework.
The real problem, from my perspective, is that the partners named as the people who worked together to bring this framework into action and to bring out its potential include a number of partners who have no research capacity. It excludes—and I do not know why it excludes them but it does—the two federal funding agencies, NSERC and SSHRC. NSERC regulates and funds research in the natural sciences, which is critical for a disease that's transferred via ticks from wildlife. The Social Sciences Research Council is critical because we're looking at what this disease does to people, what it costs the health care system, and what it does to communities.
I do not understand why scientists were excluded from this document. A corollary of scientists being excluded is that $4 million will now not be available for science.
I'm going to talk briefly about non-transparency. How the framework was assembled was non-transparent. The conference was transparent, but it was not used to inform the final framework document. In addition to being non-transparent, essentially people went away and nine months later the gestated document sprang into being. There was privileged access by the AMMI membership of the planning committee and that was documented, apparently by the AMMI member of the committee, unaware that other members did not have access to the document. Some people were allowed to see the draft document and comment on it, but certainly the patient groups were not and the science people, as far as I know, were not.
It's disturbing to have preferential input into a controversial issue where there are divergent opinions. We need to pull together. We need to accept that there are divergent opinions and talk to each other, and not privilege one side or the other. That is seen in the fact that the document specifically endorses one of the two treatment guidelines available for Canadian patients, but not the other, and it does not endorse the more recent one and the one with stronger scientific evaluations. It's also not clear to me why a policy document is dictating patient treatment modalities, because that should be determined by the physician who has examined the patient.
Funding is equally non-transparent, and we can see that in the fact that the funding priorities that are picked out are not the priorities that are important to the patient groups. I don't know where they came from; they did not come from the conference. They just appeared. In addition to all the issues that are important to Canadians—we've mentioned some in terms of congenital and sexual transmission—are there other vectors out there, is our blood supply safe? These are very important issues that are not addressed, and I don't know what happened to them.
To emphasize the importance of doing good science, on Friday of last week there was an announcement that they had found that for multiple sclerosis patients, long-term antibiotic treatment was reducing by half the number of patients who showed disease progression. All of a sudden when you start treating multiple sclerosis patients with treatment that would be appropriate for Lyme disease, you're seeing an improvement. That's really frightening. People will die of multiple sclerosis—I think that emphasizes how important it is to get this right. Canadians are dying of this disease when it's not recognized.
I'm coming to the end. I'm a scientist, and as my supervisors are keen to say, no scientists should be allowed outside unescorted, so I ended with questions that I don't have an answer to. Perhaps there is expertise in this room. Is it appropriate when drafting a framework to give some experts but not other experts, and certainly not the patients, access to directing the framework?
The document is essentially written so it will be reviewed in five years, but in this field, the knowledge of science doubles in slightly under two years. So we're left with a document, which you may feel is excellent or you may feel is terrible—I'm in the latter camp—but it will be even more out of date in another two years.
Is there a way to make this a living document? The reference within the framework that the Public Health Agency of Canada will continue checking diagnostics is not part of being a living document. It's their mandate to be continually staying up to date. Is there a way to have input into this document, ideally patient input, and definitely science input?
I'm unclear about whether it's appropriate for policy to be dictating patient treatment guidelines. That seems a dangerous thing for a high-level document like this to be doing.
My final point is just to emphasize that the ethical guidelines in both science and medicine state very clearly that the patient must be not just consulted—consulted can mean anything from, this is what we've decided to do, are you good with that?, sign here—it means the patients must be equal partners. They must be asked, what's important to you? How are we going to get there? Patients are not just fodder for being fed into science studies, and they're not just, here, take this treatment and go away and be grateful that you got it. We have to talk to Canadians who have this illness, and we have to help people.
Thank you for your time.
Thank you very much, Chair, and thank you very much, to all of you, for very powerful and personal testimony.
I know that you're not just representing yourselves, you're representing a large number of people with Lyme disease across Canada. I do want to thank you for your advocacy. The work you've done has been great, from your advocacy that got the Federal Framework on Lyme Disease Act in place— and there's the assistance that my colleague, Ms. May, brought to that—which resulted in the draft framework. I know there's been a lot of advocacy and consultation in improving the draft framework, so I really did want to thank you and recognize that.
We have a meeting on Thursday with some of the people from Health Canada and others who were part of the framework design. How do we best talk with them? I did hear in your testimony something about the current state of recognition, surveillance, and treatment of Lyme disease in Canada, but some of that is what the framework is intended to do. I think we need to get the framework rolled out to address those issues. The three pillars of surveillance, education, and awareness, and guidelines and best practices, would address some of the concerns that I heard, particularly around primary care treatment and recognition of the disease, and best treatment protocols.
Then, in the listening stage between the draft and the final framework, there were four key areas that were amended based on your advocacy and your feedback.
One is research funding, so $4 million for the Lyme disease research network, addressed through the Canadian Institutes of Health Research. Dr. Lloyd, you and I may differ on this, but I have a great respect for the CIHR and their evidence-based science, peer-reviewed approach to this. That is looking specifically at improving diagnosis and treatment, so a big step forward is research funding.
There's the recognition that there are chronic symptoms. I know there's still a tension between recognition of chronic symptoms versus recognition of chronic Lyme disease as a case type. It identifies that research is needed yet to determine that.
Then there's improving health lab networks. I think everybody's in agreement that there needs to be better lab testing. I think all of our witnesses spoke to the need for better and more exact testing.
Then, finally, there are migratory animals and recognition that migratory animals can carry Lyme, which I think, Jennifer, you specifically mentioned as well.
From there, the easiest way for me to proceed—I have to ask questions and I only have seven minutes—is to ask what would you want me to ask the people who are coming on Thursday to make sure they hear your concerns, and that if we are able in any way as a committee to improve the framework or make suggestions, how do we do that?
I have some down so I don't repeat them.
I have, what happened to Dr. John Scott's research? Why wasn't it used? Why wasn't it referenced?
I have congenital transmission and is it true, is it not? Why is it not referenced and spoken to directly?
I have funding priorities. Who sets the funding priorities? Are they based on evidence and science?
I also then have a question around the patient voice. Why is the patient voice silent in the framework? How would the authors think that the patient voice would be best drawn into it?
That's what I have so far. Those are my four questions from your testimony.
What else would you like me, or any of the committee members, to ask on Thursday that would further, in your minds, improve the framework?