Mount Allison campus stretches across the background on a summer day, with Mario Levesque smiling happily in the foreground.

Meet Mario Levesque, a tireless advocate for patients living with long Lyme

Professor of Public Policy and Canadian Politics joins CanLyme's advisory board.

Mario Levesque says his passionate advocacy for people with disabilities, and those with chronic Lyme disease, goes all the way back to his days in junior high school where a good friend of his struggled with muscular dystrophy.

“He had a lot of trouble walking around school … and there were no elevators in schools at the time,” said the associate professor of public policy and Canadian politics.

“So we had to carry him up and down the stairs all the time to get from classroom to classroom,” Levesque recalled last month in a Zoom interview from his office at Mount Allison University in Sackville, New Brunswick.

“That always stuck with me.”

So much so, he says, that he’s spent the last 20 years studying government policy and its impact on those living with disabilities, as well as looking for ways to help improve those policies. As Lyme disease gained a foothold in the Maritime provinces, infecting thousands of people, his research brought him into contact with chronic Lyme sufferers and the challenges they face getting proper medical care. 

Starting in 2018, that not only inspired him to study how government and public health policy affects the care long-term Lyme patients receive in this country, but also to advocate for much-needed change.

The new member of the Canadian Lyme Disease Foundation’s Advisory Board sat down to talk about his research and advocacy for reform with Emmett Shane. This interview has been edited for length and clarity. 

Emmett Shane: Why don’t we start with an overview of the research you’ve been doing on Lyme disease, the impact of public policy and public health authorities on the way the disease is diagnosed and treated in Canada, and how that affects patients’ lives?

Mario Levesque: The recent work that you’re referring to … was done in collaboration with my colleague Marilyn Cox. She’s a research associate at Queens University in Kingston, Ontario in the Families Matter Research Group, and her particular interest is the patient dynamic … especially how they insert themselves … as part of the medical community; the research, number one, but also in terms of their own health care and treatment. My research is a little bit different. I’m focussed … on how public policy is made, or not made, and all the pitfalls that go along with that. We may have good intentions initially when we pursue some policy changes as either academics or as a patient community … But oftentimes, though, with what they do to it and by the time it comes out as regulations or legislation, it looks very different than what we started with. My question I’m always puzzled with here is, “Why is that? What happens in this black box of policy making?” What I do is apply that to Lyme disease.

ES: So, what does that research look like?

ML: So what we did in the one paper … called Small Wins For Those With Lyme Disease In Canada: Patients In An Embodied Health Movement … is we started to piece together how Lyme disease in Canada has become an emerging field. We know that the leading edge of ticks in Canada is Nova Scotia followed by a bit of southern Manitoba, southern Ontario and southern BC, and of course we can’t forget the border between the US and Quebec. But Nova Scotia’s really the brunt of it and ground zero in Canada. And yet we have a government in that province that continues to subscribe to outdated protocols that deny patients a voice in their health care.

ES: You’re talking about the government of Nova Scotia …

ML: Yes, that’s because the government of Nova Scotia follows the Health Canada protocols, which follows the IDSA (Infectious Diseases Society of America) guidelines, which is American-set guidelines about how to diagnose and treat Lyme disease. The problem in those guidelines is that they basically deny the existence of chronic Lyme, of long-term Lyme. So they say it’s basically an unexplained phenomenon and that doctors should look for other types of problems at the root of it. In opposition to this, there is the ILADS guidelines. These are guidelines that are also based on scientific evidence …

ES: ILADS. Sorry, can you explain that, please?

ML: It’s the International Lyme and Associated Diseases Society… They have put forth a … diagnosis and treatment protocol that’s very different; it does acknowledge the fact that there is chronic Lyme out there … The problem is that it’s not recognized by governments and so what you have is a process right now where patients are excluded from … their own health diagnosis and treatment and where doctors are prevented from using their clinical judgment to look for things and to order more tests. They can do a certain basic minimum but they can’t really prod and poke hard enough to find out, really. The ILADS guidelines allow them to include the patient experience, to include the clinicians’ diagnosis, the expertise of the actual doctor on the ground in combination with testing that they do. So it’s not just based on narrow testing. This is important because the existing testing we have in Canada, in North America, is highly problematic and there’s a lot of false negatives … 

Lyme causes a lot of family stress

ML: So there’s a lot of people that are told they don’t have Lyme but they actually do … And then they’re dismissed from receiving antibiotics or other forms of treatment and anything else associated with it and are told that it’s all in their head, or something like that, it’s psychosomatic, and yet they’re left in a debilitated state for years and years and years. This is where the ILADS approach comes in, and if they were to follow this, they would have a more proactive approach, a better testing protocol, to actually get the diagnosis correct and get the treatment within the first year … preferably within the first month of discovering a tick bite or the fact that something’s wrong … The longer it persists, you may improve your condition with treatment, however you’re going to have persistent problems with your health, whether that’s swelling in your joints, whether that’s constant brain fog, whether that’s Lyme carditis, perhaps … 

ES: So how does that affect patients’ lives?

ML: The result of that for patients is that they … have to quit their jobs or they have to reduce their hours. It causes a lot of family stress. It can bankrupt them too because a lot of the treatments they seek are not covered by the provincial health-care plan. And it leaves them isolated because their friends and family dismiss them as, you know, “You look fine; there’s nothing that seems to be wrong with you… get over it…” That’s very problematic because every person that has it, that contracts Lyme, their experience with it is unique. This is what the trouble is trying to get a diagnosis; we can’t say, “If you have these three things, you’ve got it.” In terms of symptoms, it’s like 350 different symptoms that people can have …

Governments ‘acting as blockages’

ML: So enter the role of the patients … The patients get educated about what they have, on Lyme disease and everything else, but the governments are not helping them. They’re actually acting as blockages … And so patients actually become activated themselves to advocate on their own behalf and partner and develop patient organizations to try to contest the [limited] scientific evidence, to create and to partner with researchers to create new scientific evidence and to try to create new research … and then to combine with people to create the needed policy changes. 

ES: So tell us more about the “Small Wins” paper.

ML: So what we trace in our paper is the changes in these patient organizations and the small wins they’ve made over time, over the past 30 years in Canada, to try to address needed changes … For example, Lyme advocates were able to get the attention of the federal government and the Public Health Agency Of Canada (PHAC). There was a huge conference in 2016 that the Public Health Agency Of Canada led, the politicians were there. (Green Leader) Elizabeth May definitely put forward her bill to get the needed changes done. Patients were actually involved at the table presenting their own cases as well …

Federal government ‘totally sidelined the patients’

ML: What came out of that federal process in terms of the new standards was very different than what the conference embodied. And it totally sidelined the patients … And they basically said they can’t include patients in the process because that’s not evidence based … They’re saying, “You don’t matter in this process …” And on top of that, the guidelines really prevent doctors from using their own clinical judgment to make a proper diagnosis because if they pursue a Lyme diagnosis too far, doctors get sanctioned and they’ll risk losing their medical licence in their province. And what happens is you have doctors looking at patients saying, “What do you want me to do? … I work within this framework that won’t let me treat you properly …” 

You have to be in this for the long game

ML: In a public policy sense, as I teach my students, anytime you’re trying to pursue a change you have to be in this for the long game … You can’t go to government and challenge something for six months to a year and expect the change to happen. That ain’t gonna happen. You have to be in there for 30, 40 years or more to change … these bureaucracies, and that’s tiring. But it’s important … that these organizations build on that progress and that they keep pushing for change going forward … These people that are patients, not only do they see their family doctors, they get referred to neurologists, internal medicine experts … Think (of the health-care cost) versus if you had a proper testing protocol in place … We have tests from Germany that are very highly accurate, we have tests in the US that are highly accurate, yet the government of Canada and the individual provinces don’t want to recognize those tests … and the question is, why won’t they recognize it? And that leads to … a different piece of research I’m working on now exploring that question and illuminating the patient experience …

ES: I know you’ve just begun that research into why, but that was one of my questions: What ideas do you have on why governments are so hesitant to change these protocols? What’s going on here?

ML: That’s a big question, boy … So Marilyn and I have partnered up again … We said, “Let’s go and speak to people with Lyme disease, let’s go and interview them directly.” What we want to do is speak to at least 20 people in each province of Canada with Lyme disease … And then from there tease out the common threads of their experience … as to what they see as needed changes. 

It’s really easy to find people with Lyme disease

ML: So we thought we’re going to start off with Nova Scotia as a case study first and then we’re going to expand it to the other provinces. We just finished Nova Scotia, we did the analysis … and we’re just starting the interviews in some of the other provinces right now. On what we learned from Nova Scotia, first off, it’s really easy to find people with Lyme disease … If you go around southwest Nova Scotia … people we spoke with there said, “I don’t know anybody here that doesn’t have Lyme. Everybody’s got Lyme here. Everybody’s been bitten by ticks everywhere. We don’t even discuss it anymore because we all have it.”

ES: I guess what I’m wondering is, though … apropos of what you’re working on … is how does politics influence the data that goes in and the response that comes out?

ML: From Nova Scotia, we’ve identified a few factors … One is (patients) wonder if the government of Nova Scotia is trying to protect the tourism industry. That’s a huge industry … And if it’s known widely that there’s a huge tick problem in the province, that may scare off some people from coming to Nova Scotia. Number two is people wonder about the relationship between the government of Nova Scotia and Big Pharma. As they indicated to us, (pharmaceutical companies’) goal is not to necessarily cure people but just to address a few of their symptoms, to still keep them sick enough to keep buying meds.

ES: And this is what patients have told you?

ML: It’s what patients have told me in terms of what they’re wondering. And another one is they’re wondering about the commitment to health care in Nova Scotia for patients with Lyme disease … Premier Houston, the current premier, when he was the opposition leader …  was a big advocate for getting positive changes for Lyme disease, better testing, better treatment for people with Lyme disease … He’s become premier … he done very little of that. Why is that? Same thing with Stephen MacNeil before he became premier. He was big on making some changes, but again, there was little progress under his tenure. Why is this? 

Unscientific denials of long-term chronic Lyme

So we get into the role of the government versus the role of the public health official … Dr. Robert Strang, who’s the public health officer for Nova Scotia, he and the government … deny that there’s long-term chronic Lyme … There’s videos of him online saying it’s a bunch of “mumbo jumbo,” all in people’s head, which is just striking that a top public health official would say something so dismissive overall when there’s ample scientific evidence to prove otherwise. So we have a blockage here in that the top public health officials do not accept it … It’s been suggested that their argument is that testing is too expensive and the [ILADS] protocol is too expensive and that the province can’t afford it. I would argue that the patients can’t afford to not be working and the government cannot afford to have people not be working overall and to be bleeding their savings … and also to become dependent on the government …

Atlantic Canada needs Lyme centre of excellence

There’s only one real testing body in Canada, which is in Winnipeg. What Atlantic Canada needs right here is a centre of excellence for Lyme…. It’d be easy for the government to throw $25 million at this centre and have cutting edge diagnostic, treatment and educational resources … That would not cost a lot of money.

ES: I wanted to move from the provincial side of things to the federal side … A year ago the Public Health Agency of Canada essentially shelved a preliminary report that looked at methods of public participation research and gathering Lyme patient data. And its reasoning for doing so from what I could tell was quite vague. What was your reaction to that?

ML: Yeah, it’s unfortunate, because they don’t value the patient experience in research and they say it’s not based on sound evidence. What they’re doing is dismissing qualitative evidence. And they only want biological or natural science research to approach it. I think that’s a big miss … At the end of the day, it’s about people. And if you dismiss people in the process and try to take them out of there, you’re not going to understand the full situation. 

They’re missing a big part of the puzzle

So they have to find a way, a mechanism in here to partner with the public and patients as they do the research. This happened a few years ago too. The Canadian Institute for Health Resources denied funding to some Lyme groups because how they approached research was they had a prominent role for patients and patient organizations. And they said, “Because you’re doing this, we’re not funding you, because we don’t believe in that kind of research.” I think they’re missing a big part of the puzzle.

ES: What more do you think patient advocacy groups and groups like CanLyme need to do to influence the way governments, public health authorities and physicians approach Lyme disease?

ML: Number one is keep doing what you’re doing. Be active as much as possible … Partner with organizations and other groups doing like-minded research and try to get yourself inserted into the policy process. Talk to politicians, talk to decision makers, not just at election time but year-round, all the time. Make your voice heard, write letters to the newspapers, write letters to your politicians, as well. 

Be persistent

ML: Be persistent … It’s going to take a long time so make this part of your daily work, your weekly work … What I would do for the next four years or five years is continue with the federal government but direct your efforts more to your home province. Why? Because we’re going to be hard hit by the … Trump administration and so our attention is going to be diverted to trade issues and other things and not public health issues like Lyme … Then, be out in public, develop policy briefs on what your Lyme experience is, what changes you want made, then send that in … and give that to the decision makers continuously … If you take a look at the provinces, we don’t all do things the same, so sooner or later someone’s going to do things a little bit differently … We’re almost like a living laboratory, right? One province does something differently. Another province sees it and says, “Hey, that’s better than what we’re doing. Let’s do that” … Other provinces will join in and eventually force the hand of the federal government to make changes as well.

ES: What made you decide to come on board as an adviser to CanLyme after being so long on the academic side of things?

ML: How we crossed paths was I had applied for funding from CanLyme. They had a student grant that I could get for my students of up to $7,000 to help fund the research. And I applied for that for some of my research a number of years ago. I was successful in it and that’s what led to that article that we talked about – that “Small Wins” article. And so, my current work, I’ve got a small grant from CanLyme again. I was asked by them as a non-natural scientist … to join them in terms of their advisory council to share some of my insights into how government works and how government does not work and to see if we can make progress in that way …

CanLyme puts the patient first

ML: What I think I can contribute is some ideas for strategizing on how to make changes in public policy … and hopefully we can get more patient testimonials and more engagement with governments … at the provincial level to push them for needed changes … When they asked me to get involved, I did not hesitate because they’re patient focussed. They put … the patient first, which to me is the way research and advocacy should be done overall.

I want to see positive changes

ML: Because of my work I was asked to work with some different disability groups in New Brunswick here – The New Brunswick Coalition For Persons With Disabilities – I was there when it was founded and I acted as their research adviser actually for about four or five years … I did a bunch of research for them on basic income, accessible transit and other issues … Right now, I’m president of the board of directors for Ability New Brunswick … the province’s largest mobility-disability organization. We advocate for people with mobility disabilities in the province … So that activist side is in me. I want to see positive changes … 

We can’t be naive in this process

ML: Here’s the problem I’ve faced and it’s what I instruct my students on. A lot of times, people are very naïve … They think, “Here’s how we can do better so let’s take this to government. If we give it to government they’ll automatically do better, right? They’ll change the laws and everything else and things’ll be better.” That’s not how government works, ok? (laughs) Governments … have their own priorities. So if you fit their priorities, you might make progress. But if you don’t, they’re going to stall you, they’re going to dismiss you … So we can’t be naïve in this process. We have to strategize how to insert ourselves into that policy process to get the changes we want. And that’s the part that takes a long time and that we need to really work on and think about.

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