Health Committee on Oct. 3rd, 2024

[The Chair, Liberal, Sean Casey]

I call this meeting to order.

Welcome to meeting number 130 of the House of Commons Standing Committee on Health.

In accordance with our routine motion, I'm informing the committee that all remote participants have completed the required connection tests in advance of the meeting.

You have these cards on the table. Everyone who's here in person, please read the guidelines on those cards. These measures are in place to help prevent audio and feedback incidents and to protect the health and safety of all participants, including the interpreters.

Pursuant to an order of reference of June 12, 2024, the committee will start its study of Bill C-277, an act to establish a national strategy on brain injuries.

I'd like to welcome our panel of witnesses.

We have, appearing as an individual, Dr. Miriam Beauchamp, neuropsychologist and professor with the department of psychology at Université de Montréal. She's with us by video conference.

We have Elisabeth Pilon, peer support worker with Concussion Cafe Yukon, who is also appearing by video conference.

From the Concussion Legacy Foundation of Canada, we have Tim Fleiszer, executive director, who is here with us in the room.

From the Constable Gerald Breese Centre for Traumatic Life Losses, we have Janelle Breese Biagioni, clinical counsellor.

Thank you all for taking the time to appear today.

Colleagues, we're going to leave a few minutes at the end. We have a couple of study budgets to adopt, but otherwise we will proceed in the normal fashion, beginning with opening statements, followed by rounds of questions.

We're going to start with Dr. Beauchamp.

Welcome to the committee. You have the floor.

[Miriam Beauchamp, Neuropsychologist and Professor, Department of Psychology, Université de Montréal, As an Individual]

Thank you very much.

Good afternoon, everyone.

My name is Miriam Beauchamp. I'm a pediatric neuropsychologist, full professor in the department of psychology at the Université de Montréal, and director of the brain and child development axis at the Sainte-Justine hospital research centre in Montreal. I'm speaking here as an individual, as a researcher. I will make most of my presentation in French. Since I also work with members of several pan-Canadian groups that support Bill C-277, I will conclude briefly in English.

I am honoured to have the opportunity to present to you today. I speak to you as a researcher supported by the Canadian Institutes of Health Research, the Fonds de recherche du Québec and the Canada Foundation for Innovation. I also hold the Canada research chair in pediatric traumatic brain injury. Therefore, I would like to start by thanking Canadians for supporting my research.

My presentation today has two objectives. First, I want to support Bill C‑277 for the well-being of people living with brain injury. Second, I want to demonstrate that the scientific ecosystem is key to achieving the objectives of the legislation, and thus to highlight the importance of increasing federal research funding.

For the past 15 years, I have been dedicated to advancing our knowledge on the prevention, diagnosis and treatment of brain injury in children from birth to age 18. In Canada, we do excellent research and are well recognized around the world, but our research is fragile. Conducting research is an iterative process that requires constant renewal of our projects and staying ahead of rapidly evolving technology. Undertaking high-quality research is therefore costly, and depends entirely on financial support from our government.

This funding is crucial in three regards. First, it is used to fund large-scale research projects that lead to concrete clinical action for people with brain injury. For example, in my group, we are following over 1,000 babies and preschoolers to understand the impact of brain injury on development. We have identified significant behavioural problems and are now testing family-based interventions to address them.

Second, the funding is important for having the best equipment and infrastructure and remaining competitive with other countries. For example, in my laboratory, we use mobile neuroimaging technology that enables us to obtain brain images on the field when youth sustain a blow to the head. We have also developed a virtual reality treatment to improve the mental health and social life of teenagers after a brain injury.

Finally, the funding is critical for supporting our teams, made up almost entirely of motivated, dedicated and passionate students and post-docs who devote up to 12 years of their lives to research, without pay. For example, in 15 years, I have supervised 48 students who depended entirely on government grants to pay their tuition, rent and groceries, so that they can concentrate fully on improving the future of Canadians with pediatric brain injuries.

Although progress has been made in recent years in the management of brain injuries, there is still much to learn about this complex, multi-faceted condition. Maintaining and increasing federal funding for research is essential to the full implementation of Bill C-277 and to saving the lives of Canadians with brain injuries.

Concrete recommendations include: direct investment in research funding that specifically targets brain injury across the lifespan, from birth to aging; implementation of the recommendations of the Report of the Advisory Panel on the Federal Research Support System; support for pan-Canadian collaborative initiatives, such as the Canadian Concussion Network and the Canadian Traumatic Brain Injury Research Consortium, which enable us to pool our expertise and develop a concerted strategy.

In summary, I recommend that the committee not overlook the importance of research in the proposed national brain injury strategy, Bill C-277, and ensure that federal funding is increased to guarantee the sustainability of all research groups that ensure the survival and well-being of Canadians with brain injury.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Beauchamp.

Next, from Concussion Cafe Yukon, we have Elisabeth Pilon.

Welcome to the committee. You have the floor.

[Elisabeth Pilon, Peer Support Worker, Concussion Cafe Yukon]

Thank you.

Honourable members and guests, I am here today both as a person living with long-term impacts of brain injury and as an advocate for my community as a peer support worker for people living with brain injury. Thank you for having me as a part of this important conversation.

I sustained my injury by simply falling on the ice. I was 29 and working in a promising career. Eight years later, I am just one year into secure and meaningful work that sustains me financially for the first time since my injury. It has taken me this long to heal enough, learn how to manage my symptoms, tend to the intense struggles with mental health and nervous system dysregulation, and find balance with my well-being and capacity.

I have had a lot of help from different practitioners, whom I mostly sought out myself. I learned how to build the support team around me and become my own expert, in a way, out of necessity, which I have learned is a very common experience. To do so with compromised cognitive, emotional, and physical capacity is almost impossible to explain. At times, I was unable to walk more than a few steps without falling over, to make sense of how to cook myself a meal, or to string words together in a meaningful way. I didn't understand what was happening to me, and I needed supports that I didn't have. I tried to learn about concussions by trying to make sense of what I could find on the Internet, which can be a really dangerous and unreliable source without proper guidance.

It is also impossible to explain the loneliness and isolation that come from this experience. As I shared in my brief, if I hadn't had the financial, emotional and practical support of my family and close friends, I would have very likely ended up homeless and/or would have succumbed to my suicidal thoughts as a way of escaping the pain, as many, many do—all of this from an injury classified as a mild traumatic brain injury. As Dr. Charles Tator has said, “There is nothing 'mild' about concussions”.

Four years after my head injury, I started Concussion Cafe Yukon, a peer support group in Whitehorse. People with injuries of all kinds attend, from stroke to electrical injury, concussions, and survivors of severe traumatic brain injury. Four years later, I am being compensated to continue this work due to the high need. It is the only brain injury-specific community support in Yukon.

The gaps in our brain injury support systems are so vast they are difficult to cover, but I'll name a few.

Currently, there is no category of support for adults with acquired brain injury within disability services, whether you had support prior to becoming an adult or not.

Many people are encouraged to drive themselves home from the hospital—if they can get there—with very little information on what to expect and how to take care of themselves, and often with inadequate follow-up. Many have to travel south for proper care and rehabilitation like I did, which is stressful and challenging at the best of times, and it can provide added complexity and slow recovery.

Most of us pay for our care out of pocket, which can be an intense burden. Women experiencing intimate partner violence can face further barriers to leaving dangerous situations and to recovery, given the particular challenges of brain injury. Many members of our community struggle with daily tasks, like food preparation, transportation, and executive functioning skills without access to support workers, which is taxing both on the survivors and on their loved ones.

The parents with brain injury in our community face immense pressures and challenges that impact the whole family system. Some members of our Concussion Cafe Yukon community are homeless. Brain Injury Canada shares that at least 50% of people who are homeless have had a brain injury. Every member of our brain injury community faces mental health challenges, as well as the caregivers, who report feeling taxed, undersupported and alone.

We don't have any statistics on how many Yukoners are injured each year or how many live with the long-term impacts of head injury. I do know that most people I speak to have a personal story to share.

As shared in a paper by Lasry and colleagues in the National Library of Medicine, we know that the occurrence of brain injuries is higher and outcomes are worse in remote communities. They are also disproportionately higher in first nations populations, meaning that remote Yukon communities are in significant need of supports and care. We also know, through Government of Yukon statistics according to per capita sales, that alcohol consumption in Yukon is the highest in the country. Substance use, struggles in mental health, isolation and brain injury are all correlated.

It is impossible to understand the need without necessary data, or for frontline workers to provide brain injury-informed care at hospitals, in mental health settings or in substance use spaces without more resources, education and supports.

Thanks to the dedication of family members, survivors and brain injury professionals across the country, we now have a Canadian charter of rights for people with brain injury to reference. It is deeply impacting for me to have this on my wall for those I serve in the community as a guide for a standard we are orienting towards and to remind people that they matter, despite what is being reflected back to them through our health care system.

However, identifying an ideal is not enough. We need to take collaborative action across the country in order to make change in how we respond to and provide care for brain injury in Canada.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, Ms. Pilon.

Next, on behalf of Concussion Legacy Foundation Canada, we have Tim Fleiszer, executive director.

Welcome to the committee, sir. You have the floor.

[Tim Fleiszer, Executive Director, Concussion Legacy Foundation Canada]

Good afternoon.

My name is Tim Fleiszer. I'm a retired athlete who played professional football in the Canadian Football League for 10 seasons. I also played soccer, hockey and rugby in my youth. My three young boys play soccer and hockey.

Today, I'm here as the founder and executive director of Concussion Legacy Foundation Canada.

Along with our sister organizations in the U.S., the U.K. and Australia, we are the leading global charity dedicated to brain injury for youth, military personnel, veterans and athletes.

As a football player at Harvard and during my time in the CFL, I witnessed many of my teammates suffer multiple brain injuries. Tragically, this has led to several of them struggling with severe mental health issues. Some have even taken their own lives. Far too many of these athletes were diagnosed with chronic traumatic encephalopathy, or CTE, after they passed.

CTE is the only neurodegenerative disease that is completely preventable. Our mission at the Concussion Legacy Foundation is to eliminate CTE by preventing repeated hits to the head, whether on the job, in combat or while playing the sports we love. Prevention and education are at the heart of what we do, and we are committed to raising awareness around this issue every single day.

I will devote the rest of my remarks to the subject at hand today, Bill C-277.

The CLFC supports Bill C-277 in its current form as a first step to significantly reduce incidents of concussion and related brain injuries in Canada. This legislation has the potential to protect young athletes, promote safer sports environments and contribute to the long-term health and well-being of future generations.

This includes improving return-to-play guidelines and raising awareness among coaches, educators, clinicians and all Canadians.

We believe in this initiative because we want to see our kids participate in sports without the risk of severe, life-altering brain injuries. We want to help our Canadian Armed Forces servicewomen and servicemen, who put their lives on the line to protect ours, return home to their loved ones with the health and dignity they deserve. We want to ensure that those suffering the effects from multiple head impacts have access to the best possible treatments.

CLFC is proud to partner with research groups such as the brain health imaging centre at CAMH. Dr. Neil Vasdev and his team are performing cutting-edge, “first in human” trials to diagnose CTE in living patients. I was honoured to be the very first scan for this groundbreaking study. Our partners at the Canadian Concussion Centre are performing autopsies to determine the prevalence of CTE in Canadians. This research contributes to our global brain bank, alongside that of experts in Boston, Oxford, Auckland, São Paulo and Sydney.

CTE is preventable. With the right strategies in place, we can ensure that our children, athletes and military personnel avoid the devastating consequences of repeated brain injuries.

Mr. Chair and all members of the House, I would be remiss if I didn't take a moment to thank you for your unanimous support of this critical bill. Like all of you, CLFC strongly supports Bill C-277, a pivotal piece of legislation that has the potential to enhance concussion safety through the implementation of a national strategy for brain injury prevention.

Following the swift passage of this bill, CLFC offers the following recommendations to the Minister of Health for inclusion in a national strategy to support and improve brain injury awareness, prevention and treatment.

One, implement age-specific regulations to prevent brain injuries in youth sports.

Two, mandate brain injury education and awareness.

Three, establish an advisory panel on neurodegenerative brain injury treatment and prevention.

Four, monitor and evaluate policies using evidence-based methods.

Five, implement the recommendations from this committee's 2019 report, “Tackling the Problem Head-on: Sports-Related Concussions in Canada”.

We can make this national strategy a reality and have Canada lead the world in preventing, studying and treating brain injuries.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you, Mr. Fleiszer.

Finally, on behalf of the Constable Gerald Breese Centre for Traumatic Life Losses, we have Janelle Breese Biagioni, clinical counsellor.

Welcome to the committee, Ms. Breese Biagioni. The floor is yours.

[Janelle Breese Biagioni, Clinical Counsellor, Constable Gerald Breese Centre for Traumatic Life Losses]

Thank you.

Honourable members and guests, I am here today to speak not only as the CEO and founder of the Constable Gerald Breese Centre for Traumatic Life Losses or as a clinical counsellor, but first and foremost as a family member who has personally lived with the devastating impact of brain injury.

In 1990, my husband, Constable Gerald Breese, sustained a severe traumatic brain injury in a police motorcycle accident while on duty with the RCMP. This left him with significant personality changes and an inability to manage his emotions. His battle, like so many others, was not just against the injury but also against a health care system that was ill-prepared to support him or our young family.

The hospital couldn’t manage his care or his behaviour and, after three weeks, with no rehab facility available, I took him home. I left my job, cared for our daughters and became his primary caregiver. The overwhelming shift in roles and responsibilities took a severe toll on all of us, especially him, and five months later, he tragically died of a catastrophic heart attack brought on by the intense and relentless stress of his recovery.

Sadly, our story is not unique. Thirty-four years later, families across Canada continue to face the same struggles. Brain injury survivors, if they get to the hospital, are often discharged with little to no follow-up care, leaving families to navigate an overwhelming, fragmented system while facing mental health challenges and increased risks of addiction, homelessness and criminality.

Today research shows that brain injuries affect more than just young men or athletes. Hundreds of thousands of women suffer brain injuries from intimate partner violence. Many Canadian veterans may be underdiagnosed, while indigenous people experience a disproportionate impact from brain injury, often facing unique challenges in accessing care and support. Seniors and children are also affected. Brain injury does not discriminate; it impacts people of all ages, backgrounds and communities. It can happen to anyone, anywhere, any time.

While our health care system has made progress in saving lives, we have not done enough to address the lifelong impact of brain injury or to ensure quality of life for survivors. They lose their sense of self, their connection to family and community, and their chance at a meaningful recovery. If we continue to fail them, we will continue to see rising rates of mental health crises, substance abuse, homelessness and criminal justice involvement. Brain injury not only lives in the forefront of these crises; it also lingers in the aftermath. The cost of inaction far outweighs the investment in proper care.

Two years ago, I was widowed for the second time. During my second husband's seven-week battle with cancer, I saw first-hand what a well-structured, coordinated care model could look like. We didn't have to seek out help, because every professional and resource was deployed to us through a cancer care model. This is the kind of model we need for brain injury survivors, but to achieve it, we need a framework.

Our organization recently released the Canadian charter of rights for people with brain injury. It recognizes their right to appropriate, dignified care and assistance in navigating the health care system, but a charter alone is not enough. It must be supported by a national strategy.

When we know that the incidence and prevalence of brain injury in Canada surpasses the number of cases of spinal cord injuries, HIV-AIDS, multiple sclerosis and breast cancer combined, it is perplexing that despite these crushing figures, brain injury remains the orphan of our health care system, left far behind while other conditions receive more attention and resources.

This strategy is the north star we have longed for. It will shine a light on what is working as much as it will shine a light on what is not working. It will provide the road map we need to coordinate care, train health care providers and ensure that services are accessible in every jurisdiction. We can learn from one another, problem-solve together and ultimately improve outcomes for individuals and strengthen the families and communities impacted in Canada.

We cannot afford to wait any longer. Brain injury is not an individual crisis; it is a national one.

I personally want to thank my MP, Alistair MacGregor, for standing shoulder to shoulder with me since 2018 to bring this forward today. This is a historic moment for the brain injury community.

Thank you.

[The Chair, Liberal, Sean Casey]

Thank you very much, Ms. Breese Biagioni.

We're going to begin now with rounds of questions, starting with the Conservatives.

Dr. Ellis, you have six minutes.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thank you very much, Chair.

Thank you to all the witnesses for being here. I think, as Ms. Breese Biagioni said, it's a historic moment, so hopefully we can make the best of it.

Ms. Beauchamp, can you tell Canadians what the most common issues are among young people with a brain injury?

[Miriam Beauchamp]

Yes, of course.

That depends a bit on the individual's age. Between birth and the age of 18, there are a number of changes.

My colleagues have talked about adults and aging. There are problems in every sphere of the individual's functioning. These can include: cognitive problems, such as language problems, memory or attention problems; physical problems, such as coordination, motor skills or balance problems; or emotional or psychological problems, such as mental health problems, anxiety, depression or stress, for example. We're talking about a decline in quality of life. We can't always predict which sphere will be affected after an injury. That's the complexity of a craniocerebral trauma or a brain injury. We need a number of resources and a wealth of knowledge to properly take care of people who have suffered injuries, since they may have dysfunctions or deficiencies in a number of areas in terms of daily functioning.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thanks very much, Doctor.

Maybe I'll turn to you now, Mr. Fleiszer. You obviously have experienced this first-hand, as has one of our other witnesses, Ms. Pilon.

I think one of the things I'm really struggling with to try to help Canadians is how to help parents to be better able to identify kids who have had a brain injury. Other than witnessing the injury itself, as we just heard, the symptoms are so complex that maybe it's difficult for parents to actually realize what's happening.

What advice would you give, as someone who has suffered a brain injury, to say, watch out for this, or this is something that's common or serious or indicative of a brain injury? Feel free to expand on that if you would, sir.

[Tim Fleiszer]

I think the best way to address that would be to actually try to prevent those injuries before they happen.

We have a program that is very deliberately and provocatively titled “Stop Hitting Kids in the Head”. We know that children's brains are developing up until the age of 12, 13, 14, and having those children heading soccer balls, getting tackled in football and rugby, and getting body-checked in hockey is a terrible idea. That's the first thing we can do.

The second thing is creating awareness programs. We talked about mandatory education, whether it's parents, teachers or classmates themselves. I think of the story of Rowan Stringer, who suffered a bad concussion, didn't tell her parents, didn't tell her teachers, but had told her friends. Asking somebody who's neurologically impaired to self-report is, again, a terrible strategy. We really have to teach this bystander model of teaching others what to look for and what to recognize.

The first thing that should happen when somebody has a big fall, whether that be on the sports field, in the playground or just a garden variety accident, is thinking about the possibility of brain injury and looking for that behaviour change.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thanks very much for that.

I have a follow-up question, if I might.

I can remember being a physician on the sidelines of my kids' rugby games. At one point, there was a really interesting tool for your phone. There were concussion guidelines that you go through. Obviously, there are multiple ways to help bystanders recognize concussions.

Are there any apps or things that you're aware of or that you guys are working on that are going to help that recognition? As you said, recognizing it, understanding it's part of the sport, is most important. What advice do you have for folks on the sidelines?

[Tim Fleiszer]

I think relying on people's judgment rather than relying on technology, in terms of trying to best diagnose these injuries, is the best way. One of the issues with technology is that there is a barrier for people who either can't afford it or can't access it.

From a technology standpoint, though, I do think there is a role for that in terms of treatment, so that is something that we have invested in.

[Stephen Ellis, Conservative, Cumberland—Colchester, NS]

Thanks very much for that.

Ms. Pilon, you mentioned during your testimony that you had a traumatic brain injury. When we're looking at that, what specific supports would you have recommended be available to help you, first in your diagnosis and then in your recovery?

[Elisabeth Pilon]

I imagine that moment at the hospital and I imagine being told that if you've seen one brain injury, you've seen one brain injury and that everyone can be different. It's really just about bringing curiosity and awareness, and maybe having a pamphlet handed to me with what to expect for mental health, sleep disruption or changes I could track, perhaps with a questionnaire like the Rivermead post-concussion questionnaire, where I could track my symptoms, which I only found four weeks later. I imagine something like that right at the initial moment.

Encouraging me to call someone to support me would be a thing. I think about.... Was it Tim with the Concussion Legacy Foundation? Sorry, I forget his name. He was talking about how—

[The Chair, Liberal, Sean Casey]

Ms. Pilon, we're going to let you off the hook there. We're past time.

[Elisabeth Pilon]

Oh, okay.

[The Chair, Liberal, Sean Casey]

We're going to stay in the Yukon; next up is Dr. Hanley for six minutes.

[Brendan Hanley, Liberal, Yukon, YT]

Thank you very much.

Don't worry, Ms. Pilon. I'll give you some more airtime.

First of all, I want to thank all of the witnesses for their participation today and for their ongoing advocacy. I also salute Mr. MacGregor for his perseverance in bringing this bill through.

Ms. Pilon, greetings to a fellow Yukoner. Thanks to technology and the House of Commons' support, we're a few kilometres away from each other, but we can both participate in this important meeting in Ottawa. I want to thank you first for your courage in sharing your experience and for demonstrating such leadership on brain injuries even as you progress on your own journey.

I have many questions, but I want to start with Concussion Cafe. I have this image based on your written brief where you describe yourself at some moments lying down with your eyes closed and leading the group. That's an incredible image and also a testament to your own perseverance in this.

Can you describe the Concussion Cafe? Who comes to the Concussion Cafe? Obviously, I'm not asking about individuals, but what have you witnessed in terms of the spectrum of people who show up and the spectrum of what really constitutes a brain injury?

[Elisabeth Pilon]

Thank you, MP Hanley. It's really good to be here with you.

I'm going to make a quick reference to my speech here, where I noted that we have brain injuries including stroke and people recovering from and living with the long-term impacts of stroke, electrical injury, concussion and survivors of severe TBI from car accidents and things like that. It's such a wide range of injuries.

In the beginning, we had caregivers and everybody attending but then quickly realized that to have both parties attending at the same time was actually not in service of the best interests of everybody. We realized it would be best to separate the parties to have caregiver supports as well as people living with impacts of brain injury themselves, first-hand.

It could be anything. I referenced this moment of lying on the floor because people had been sent my way to talk about their experiences with brain injury, and they had asked me about mine, and we were just so in need of the connection that comes from and is deeply impacted by these conversations with each other. We would share stories, and there was this understanding across the room without having to say almost anything, regardless of the type of brain injury, of this one string of universal experience that we could all understand without having to name it. To have that space to be together was so powerful. I realized that even if sometimes I was still not well enough to show up in the way I might have wanted to, to be there in any way and promote showing up exactly how we are was a really important way to lead. Someone said, “Be the cleanest dirty shirt”, so there I was just trying to be the cleanest dirty shirt to hold that space.

[Brendan Hanley, Liberal, Yukon, YT]

I'm going to cut back in there, because I have only a couple of minutes left.

Can you describe a bit—you referred to this—how brain injuries may be more difficult to understand, assess or treat in the north and in more remote regions of Canada?

[Elisabeth Pilon]

I was sent down south to St. Michael's Hospital—my family came and got me—where they had assessments and information to provide me. That's where they had a community of people and specialists and the access to brain scans and things that we simply don't have here.

That was deeply impacting, as well as just the simple frontline education in the hospital: having someone tell me to drive myself home or not and tell me what I might expect. All of those things can make a world of difference.

[Brendan Hanley, Liberal, Yukon, YT]

Thanks.

I know that assessment and treatment for concussion in particular, and brain injuries in general, are perhaps a little more nuanced and sophisticated than they used to be. I know that Dr. Beauchamp referred to that progress. I would say that Dr. Powlowski, Dr. Ellis and I would remember the days when we just told people with concussions to go to bed and lie in a dark room until they were ready to go.

How would this bill help to get that consistent level of awareness and education to the front line in terms of managing concussion and brain injuries?