62. The role of patient organizations with Mario Levesque

In this podcast we speak with Mario Levesque, Associate Professor of Canadian Politics and Public Policy in the Department of Politics and International Relations at Mount Allison University. His teaching and research focus on Canadian politics and public policy, with interests in Atlantic Canadian politics and Lyme disease policy in Canada. He recently co-authored a paper with colleague Marilyn Cox, “Small Wins for Those with Lyme Disease in Canada, Patients in an Embodied Health Movement”.¹

Lyme disease and disability policy intersect

Mario talks about his entry into policy work, navigating policy between the private sector and government. This early work sparked his interest and motivated him to learn more about public policy. After receiving his PhD in public policy, he started working in the area of disability policy,  work that overlaps with the work he’s now doing regarding Lyme disease policy. After his conversations with Vett Lloyd of Mount Allison University, Mario developed an interest in studying Lyme disease policy in Canada.

“We have this blockage and this debate between the main schools of thought…in terms of what guidelines should be followed, and what should not be followed. But we’re seeing something that’s troubling, and that is the fact that we have the marginalization of Lyme disease patients in this process. Their own experience is being dismissed by the health professionals that are out there, and they’re pushed to the side.”

Mario Levesque, PhD

Treatment guidelines failing patients

Mario talks about the ongoing debate between different schools of thought regarding Lyme disease in Canada, and the marginalization of Lyme patients that has occurred because of the gap that has developed as a consequence of these different approaches. He found that patient’s experiences were often dismissed by health professionals, and points out that simply relying on guidelines is not good enough for Lyme patients. He also emphasizes that research needs to consider different approaches to treating the disease.

“One of the biggest problems is, if the medical establishment, if you don’t fall within what their guidelines say it is, well then it’s unexplained and therefore they have to look for something else. And that’s unfortunate because physicians here are very restricted and what they’re told that they’re to look for. Perhaps they even face repercussions from their own medical establishments or what not, from their provinces, So they’re not using their full judgment. They’re trained to use their judgment. Let them use their judgment in this process and let them ferret it out and go further for the actual patient.”

Mario Levesque, PhD

Patients in an embodied health movement

Mario and his colleague Mariliyn Cox looked at how patients responded as they sought solutions to the challenges they faced. He describes this response as an embodied health movement in which patients become aware of the situation they’re in, look at what needs to be done and become leaders in advocating for themselves. 

“So we frame this as an embodied health movement where patients first have to become aware of what the condition is, their own situation and, and treatment steps going forward. They have to become able to be leaders in advocating for themselves in this process as well.”

Mario Levesque, PhD

Restrictive guidelines leave patients seeking alternatives

Mario talks about how restrictive guidelines for Lyme disease have marginalized patients, by reducing their chance of receiving a diagnosis and treatment. He gives the example of Nova Scotia, where criteria such as a specific rash and seasonal activity of ticks are central to the diagnosis of Lyme disease in that province. He notes that if patients don’t fit specific criteria, their doctors often dismiss the possibility of Lyme disease. Many patients aren’t able to receive the care they need, and seek alternatives outside the public healthcare system in Canada.

“We have people falling through the cracks, and so they turn around and look for other alternatives. A lot of people go elsewhere. They try to go to private clinics, they go to the US or Europe for treatment at a huge cost to them personally and to their family.”

Mario Levesque, PhD

Supporting doctors who treat Lyme patients

From the perspective of healthcare providers, Mario points out that physicians are not always encouraged to use their judgment in treating these patients, even though they’re trained to use their full judgment. He notes that some physicians have faced repercussions for treating outside of the restrictive guidelines. 

Patient partnerships: working with experts to solve problems

As a result of better understanding their disease and their situation, patients become their own advocates and partner with others in order to solve their problems. Mario calls these partners oppositional experts; medical practitioners, researchers, and other key individuals. He notes that, even with these collaborations, it’s very difficult to challenge the health framework surrounding Lyme disease in Canada. 

“Patients have evolved to become aware of themselves, of their condition, be leaders of change in advocating for themselves, but crucially, they’ve partnered with other people. So this is what we call oppositional experts…medical practitioners and other key individuals…to partner with them in research and trying to change…really challenge the health framework surrounding Lyme disease in Canada, and it’s like going up against a brick wall. The challenge that’s happened though, is when we get governments on board…the discussion narrows to medical professionals only and they adopt a very narrow interpretation of what should be put forward.”

Mario Levesque, PhD

Change is slow

Mario points out that discussions about how to solve these problems often narrow to include certain medical professionals only, and the interpretation of what is put forward narrows as well. When individuals in key positions in governments across Canada support restrictive guidelines, this affects not only health policy, but also the types of research that is being done.

Research that meets the needs of Lyme patients

Mario describes the challenge that exists in trying to develop research that incorporates the needs of the people it is meant to serve. He believes that patients need to be more involved in that research, beyond tokenistic participation that often occurs when patients are involved in Lyme disease research. He explains that changes in Lyme policy have been slow, and calls this a small wins approach in which, despite gains being small, people need to continue to keep working on solutions.

“So this is a challenge in trying to create research that is more holistic and that incorporates people. The one thing that we want to do in research going forward and in the guidelines is involve the individual, the Lyme disease patient. Involve them in, right from the start, in designing the research and partnering with them, involve patient organizations for sure and oppositional experts.”

Mario Levesque, PhD

More funding is needed

Mario believes that patient organizations have done a good job in trying to disseminate awareness and information, and validate peoples’ experiences. He also believes that organizations need to secure funding, including private sector funding, to continue to move forward with the research. He encourages everyone to continue to advocate and push for discussions, including with those who may be at polar opposites to their point of view. 

Supporting different approaches to treatment: Lyme can be complicated

When it comes to physicians who are treating Lyme patients, Mario highlights the importance of accepting different approaches to care, trusting doctors to use their best judgment, and protecting those who are trying to do their best to help their patients. He notes that when it comes to Lyme disease, because the disease manifests itself in different ways for different people, a cookie cutter approach doesn’t always work.

“We have to accept the diversity of approaches and actually trust the doctors that we train in this process…we can’t have a cookie cutter approach because the disease doesn’t manifest itself in the same way necessarily. So, you know, governments like cookie cutter approaches. This isn’t one of those times when you can use that kind of an approach.”

Mario Levesque, PhD

Continuing research to better understand Lyme disease in Canada

Mario is currently working on research looking into comparisons between health policy between Nova Scotia and the neighbouring state of Maine. He’s also researching the relationship between deer populations, the expansion of ticks and the spread of Lyme disease. Thank you Mario (and Marilyn) for your research on patient advocacy and Lyme disease in Canada and your ongoing research regarding Lyme disease.

Transcript

Catherine Kinsella: Welcome to Looking at Lyme, an educational podcast of the Canadian Lyme Disease Foundation, designed to increase awareness, empower listeners with expert knowledge, and explore solutions. I’m Catherine Kinsella. 

Sofia Osborne: And I’m Sofia Osborne.

Catherine Kinsella: In this podcast, we’re excited to welcome Mario Levesque. Mario is an Associate Professor of Canadian Politics and Public Policy in the Department of Politics and International Relations at Mount Allison University.

His teaching and research focus on Canadian politics and public policy with an emphasis on Atlantic Canadian politics and disability and environmental policy. Mario has an emerging research agenda on Lyme disease policy in Atlantic Canada, and has published in a variety of journals, including Canadian Public Policy, Canadian Public Administration, Canadian Parliamentary Review, and the Journal of Parliamentary and Political Law.

He recently co-authored a paper with colleague Marilyn Cox called Small Wins for Those with Lyme Disease in Canada, Patients in an Embodied Health Movement.

Sofia Osborne: Welcome to the podcast, Mario.

Mario Levesque: Thank you for having me.

Sofia Osborne: So, how did you become interested in studying and working in the field of politics and public policy?

Mario Levesque: Oh, that’s fascinating. First off, I love politics. I breathe it. I live it every single day. And to be honest with you, I was in the private sector years ago and I got involved with the business association working with government to try to get needed changes to workplace health and safety regulations in Ontario.

It was a very positive experience and it was really good working with government, and we were able to make a lot of progress and reduce workplace accidents. Based on that work, my association asked me to again volunteer and work with government on other issues related to pesticides of Ontario and bringing in a regulatory framework for the province that would be doable for the industry as well.

And I have to tell you, Sophia, that was just utterly frustrating. And it got me thinking, why is it that you can work with government sometimes, and you have a shared interest and you’re able to make good progress, and other times you just end up in a dead end all the time and just really, things break down. And with the pesticides, things did break down.

That got me curious about public policy. And then it was like, well, You know what? Where can I learn more about this? And so I then decided to do my master’s work in public policy. It was at Western. And then from there, I was still curious. And, I was, uh, well, you know what? I think I’m going to do a PhD in this.

And I went to McMaster afterwards to do a PhD in public policy. And then here I am today researching all these issues and everything else. So I’m very lucky. I’m able to study these issues and try to Illuminate problems in the policy process for people.

Sofia Osborne: And so since doing your master’s and PhD in public policy, what kinds of projects have you been working on?

Mario Levesque: So since then I’ve developed an ongoing research agenda on disability policy in Canada. This is accessible transit, this is political participation, this is accessible housing, basic income for people with disabilities, issues like this. Something that comes across in the disability sector that dovetails with Lyme disease actually and ticks is the fact that the end result for some people here, or a partial result in their processing here, is that people can become disabled in this process, whether that’s temporarily or from an episodic perspective or long term, and so when I was talking to a colleague here at Mount Allison University, Dr Vett Lloyd in the biology department, probably Canada’s leading tick expert, and she was doing a lot of work on this, and it got me curious about what’s done in the policy angle regarding Lyme, and there wasn’t much that I found, and so I got curious and started doing a little bit of research on it.

Sofia Osborne: So could you tell us a bit about your recent paper on patient organizations? 

Mario Levesque: Sure. When we start reading it and start studying Lyme disease, um, so first of all, Marilyn and I are new to this field of Lyme disease as of about four years ago, five years ago, and doing research on this. And so it is emerging in terms of the research for us, but we see this dialogue, so we’re social scientists, so we don’t study the actual disease, the biological aspects or the ticks or anything else like that. So we study the human interactions and also the policy dynamic. And so we find a big void, so we have this blockage and this debate between the main schools of thought that are in this process in terms of what the guidelines should be followed and what should not be followed, but we’re seeing something that’s troubling, and that is the fact that we have the marginalization of Lyme disease patients in this process. Their own experience is being dismissed by the health professionals that are out there, and they’re pushed to the side. 

And we know from history that just relying on the guidelines from the health professionals, that’s not good enough simply because they’ve become, I would argue myself, captured to a select few individuals or bodies, and in that process, they’re not allowing new research that contests their own approaches.

So the research looks at what’s happened with patients in this process. So we frame this as an embodied health movement where patients first have to become aware of what the condition is, their own situation and, and treatment steps going forward.

They have to become able to be leaders in advocating for themselves in this process as well. And then we trace the methods that they’ve done in order to move forward. But right away, we see that the marginalization is significant. We know that a lot of Canadian provinces rely, like Nova Scotia, for example, rely on outdated standards where they, uh, they want to look for the bullseye rash that they mentioned that is typical.

It can maybe present itself in as few as 9 percent of the population, depending on the study you actually see. So that’s not good in terms of just really relying on that as your main marker. They also then, for example, in Nova Scotia rely on that, for example, you have to have been bitten by a tick in season.

Well, you can be bitten by a tick in all four seasons. So we see patients going through a process where they have difficulty in trying to get treated for their conditions that they actually express. And one of the biggest problems is if the medical establishment, if you don’t fall within what’s, their guidelines say it is, well then it’s unexplained and therefore they have to look for something else.

And that’s unfortunate because physicians here are very restricted and what they’re told that they’re to look for. Perhaps they even face repercussions from their own medical establishments or what not, from their provinces, So they’re not using their full judgment. They’re trained to use their judgment. Let them use their judgment in this process and let them ferret it out and go further for the actual patient.

So We have people falling through the cracks, and so they turn around and look for other alternatives. A lot of people go elsewhere. They try to go to private clinics, they go to the US or Europe for treatment at a huge cost to them personally and to their family. 

So when we take a look at this, we see that patients have evolved to become aware of themselves, of their condition, be leaders of change and advocating for themselves, but crucially, they’ve partnered with other people.

So this is what we call oppositional experts, in here. So medical practitioners and other key individuals, that are researchers, that are working on these key issues, to partner with them in research and trying to change, trying to change, but trying to really challenge the health framework surrounding Lyme disease in Canada, and it’s like going up against a brick wall.

The challenge that’s happened though, is when we get governments on board trying to come along and to recognize Lyme disease, elaborate a framework. All of a sudden the discussion narrows to medical professionals only and they adopt a very narrow interpretation of what should be put forward.

Part of that is in relation to the fact that they belong to specific health associations based out of the U. S. that still subscribe to the outdated 2006 guidelines. And these individuals are in key positions in various governments across Canada. So, so they block changes going forward. So we have to push beyond these individuals in trying to make progress. 

Another good example is the government of Canada came out with funding in trying to support lyme disease research, but they turned around, gave the bulk of it to one group of individuals, which is challenging, instead of sharing that a little bit more broadly across the country,  in order to try to make progress. The challenge there is that the one group they gave a lot of it to, subscribe to the old guidelines as well.

So this is a challenge in trying to create research that is more holistic and that incorporates people. The one thing that we want to do in research going forward and in the guidelines is involve the individual, the Lyme disease patient. Involve them in, right from the start, in designing the research and partnering with them, involve patient organizations for sure and oppositional experts. The problem is, though, CIHR, so the Canadian Institute for Health Research, often blocks individuals when they bring in patients into their research because they say that’s anecdotal evidence in this process, and it’s not scientific enough. So again, we have gatekeepers in this process. So we need to be able to figure out a dynamic to unblock this limited thinking.

Sherry Arnstein did some work back in 1969. So a long time ago here, and she documented the type of engagement that governments used to engage people in consultations. And she called it the ladder of citizen participation. At the very bottom of that ladder, that first step, is called tokenistic consultation, which means they basically just tell you what they’re doing and you’re there. You know, I’m the expert,. I’ll tell you what’s going on, and that’s it. There’s no more involvement than that. That’s still that step where we’re at today in regards to Lyme disease research, unfortunately.

So we adopt what we call a small wins approach in documenting the trajectory over time of how this has progressed and we think it’s a good model to use because there have been some small wins of changes along the time, but they’ve been very small.

But it also shows though, that you need a very long timeline to address this type of an issue overall. And we’re talking here over 30 years or 40 years at that, you know, we’ve been working on this and we’ve made limited progress. But I would argue we should not stop fighting for it. We need to keep pushing forward.

We can’t give up in these types of things. There’s, there’s too much there. People matter at the end of the day. We can’t dismiss them. And I guess that’s, that’s the best way to sum it up. 

Catherine Kinsella: What recommendations do you have for patient organizations moving into the future from what you’ve learned in the past?

Mario Levesque: I think patient organizations have been doing a really good job, number one, of trying to disseminate awareness, trying to disseminate information, validate people’s experiences as well. People are not crazy in this process. Their experiences are real. And then trying to partner with experts in the field and research and trying to move the agenda forward.

I think they need to keep doing that. One thing they may need to keep doing as well is trying to secure funding. That’s the proverbial challenge for it. It’s so hard, you know, when governments are very restrictive in how they choose which projects to fund. You know, it’d be great to appeal to the private sector if there is an individual out there or some individuals out there that, that would like to approach it from a patient-centered perspective. I mean, I’d love to speak to them

Catherine Kinsella: Beyond awareness and prevention, is there anything else that health authorities and associations could do to support patients and their doctors in the context of all the unknowns that still exist? 

Mario Levesque: For patients, I would say, continue to advocate. This is something that I think the disability community does really well. Because they’ve been dismissed for so long, they’ve become very hardened, and become very strong advocates, and not accepting no. You know, they say no, they get a door shut in their face, they go down again, and they try to break it down the next day, and they keep pushing and pushing hard, until they can make some progress.

There are different strategies for how to try to affect change. And I think we need to keep doing this and I would extend it for Lyme disease here. Not just the politicians, but also the medical community and in meeting with them and talking with them and talking through ideas and research and, not not yelling or anything like that. I don’t think that that’s very progressive or very helpful to a discussion, but I think sitting down with someone we may be polar opposites in our thinking, but we shouldn’t be able to agree to sit down and listen to each other and explain to each other why we feel differently and why we need changes.

And they may explain to us why they can’t change at that time. And then it’s like, what can we do? And how can we at least move things forward a little bit? We should be able to have those discussions. And so we need to be out there more and to continually have those discussions. I think a lot of organizations have been trying to do this.

I think they’ve been doing a good job on this front. It sounds discouraging to just keep doing more of the same because we’re not seeing the large progress, the large steps being taken. I would argue the more persistent we are, the more chance of success we’re going to have overall. 

Catherine Kinsella:  And just in terms of medical professionals having the capacity to treat these patients, I know that in 2009, 17 US states enacted legislation and other initiatives to protect doctors who treat chronic Lyme disease. And I know our healthcare systems are quite different, but do you think something similar could occur in Canada? 

Mario Levesque: It depends on the payment system. And, um, the regulation. So what happens to someone in Canada if they don’t follow, so say you’re a Nova Scotian, you don’t follow the 2006 guidelines, and you persist in trying to help out your actual patient. Are you sanctioned? What happens in this process? If you are sanctioned, then it becomes, well, yes, we do need some type of legislative change in this process to protect doctors who are just doing their job and trying to help out the actual patient. We have to accept the diversity of approaches and actually trust the doctors that we train in this process, as well is what I would, I would argue.

So that may lead to different approaches to investigating things. And we can’t have a cookie cutter approach because the disease doesn’t manifest itself in the same way necessarily. So, you know, governments like cookie cutter approaches. This isn’t one of those times when you can use that kind of an approach.

Catherine Kinsella: Yeah, and with the, certainly the lack of one size fits all treatments, you know, they’re, they really have to use their skills and their, their training to treat these patients. 

Mario Levesque: And that’s what’s being sidelined right now. They’re not being allowed to use those skills in training. I mean, I feel for medical doctors, they, a lot of them do want to help and stuff, but they basically come to a wall and say, I can’t. I have to follow this, and I’m limited. So in that regard, we need to go back and to work with the politicians, but keep educating people, keep working with them, keep meeting people, publicizing it in as many ways as possible. Anytime there’s anything, be there and ask people, you know, the next election and, for example, in New Brunswick 2024, there’s going to be a provincial election.

We should be asking our Candidates here. What are you going to be doing with regards to Lyme disease? How are you going to be approaching this? What’s the, what’s the, what’s the party’s policy, uh, surrounding the treatment of Lyme disease? Put them on notice that we’re watching them and ask those tough questions.

Catherine Kinsella: And so you mentioned that one publication that you’re working on. Are there any other projects that you’re working on right now? 

Mario Levesque: Yes, actually, there’s a couple of them. There’s another project I’m working on, is looking at the Lyme disease framework in terms of policy framework in the state of Maine versus Nova Scotia. So comparing the two and their evolution and finding that Maine is much more advanced than what Nova Scotia is, yet we’re side by side in terms of each other, right? I mean, it’s just a short body of water that separates them. So that’s interesting. And so for us to think that it’s not that Nova Scotia is not endemic, it’s like, yeah, no, that doesn’t hold water at all.

Another project I’m working on is with another colleague, and that’s looking at deer and ticks and spread of Lyme disease, and especially in the control of deer in two small communities, actually, and the approach to the control of deer because deer are an important vector for for the expansion of ticks.

Catherine Kinsella: This is such important work that you’re doing now. And I really want to thank you and also Marilyn for co authoring that paper and moving forward doing some other work together. So thanks very much for being with us, Mario. 

Mario Levesque: Thanks Catherine and Sophia as well. And I want to thank Marilyn. But I think just on her behalf on my behalf, we both want to thank first CanLyme. They had funded a portion of our study 7000 dollars actually for research assistance. So I think that’s important, but also all the Lyme disease patients.

We want to tell them that people are out there. We are listening as researchers. We want to work on these issues and we are working on them and we do want to partner with the community and we’re going to make progress on this. It’s just going to take a lot of time. I apologize ahead of time for the time it takes, but I think collectively, working together.

I think we’re going to break through in this. 

Catherine Kinsella: I agree. 

Sofia Osborne: Thank you so much. Thank you for joining us. 

Mario Levesque: Oh, you’re welcome, Sophia.

Sofia Osborne: Wow. That was such an interesting and like, really refreshingly frank conversation. 

Catherine Kinsella: Yeah, you can tell that Mario’s been doing this for a while and he’s done his research for sure and really articulated a lot of the problems that are occurring  in our healthcare system and different approaches to trying to solve those problems.

Sofia Osborne: Yeah, it was really interesting to hear his recommendations for patients and patient organizations as someone who has spent a lot of time and has a PhD and everything, in public policy and advocating for change, especially around disability policy as well, and how that intersects with Lyme disease. Yeah, I think he just had a lot of inspiring words about, you know, it does take a long time and it is, it is the series of small wins, but that change can still be made. 

Catherine Kinsella:  I like that he talked about, even in terms of research, just sitting at the table and allowing everybody to have a voice and, you know, if you have a disagreement, then to talk it over and to not just always present one side of an argument, to look at all the different perspectives that are involved.

Sofia Osborne: Yeah, I think the thing that kept coming up over and over again in that interview was the idea that there are gatekeepers who are trying to have just one sort of narrative around Lyme and that that needs to be shaken up and that new voices and new research needs to be allowed into the conversation. 

Catherine Kinsella: Exactly. Yeah.

Sofia Osborne: Well, make sure to tune in next time as we engage with more experts from Canada and around the world. Thanks for listening.

1. Cox M, Levesque M. “Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement. Zoonotic Diseases. 2024; 4(1):22-36. https://doi.org/10.3390/zoonoticdis4010004