Evidence of meeting #26 for Health in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was covid19.
A recording is available from Parliament.
Bloc
Jean-Denis Garon Bloc Mirabel, QC
Thank you, Dr. Falcone.
There's a question that's been on my mind. There's a popular idea floating around that long COVID‑19 doesn't really exist. There seems to have been even more doubt about it than about the existence of the virus itself.
Can you tell us how such ideas came to be circulated?
How has our knowledge of the long version of the disease evolved?
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
Ms. Goulding raised some very interesting points about this. There are still doctors who don't recognize the disease. There are still patients who have a certain amount of doubt. This is unfortunate because it interferes with the management of these patients, and it affects their return to work, their sick leave, and so on. All of this compromises their ability to function, of course, and their recovery.
So there has been an evolution, but there is still a way to go in terms of raising awareness about long COVID‑19.
Bloc
Jean-Denis Garon Bloc Mirabel, QC
Is this because the symptoms themselves are poorly recognized? We know that they aren't very different from those of COVID‑19. How do you explain that? Is there a lack of clinical criteria for doctors?
When you talk about awareness, what do you have in mind? Are you thinking of better communication with physicians, as circumstances are changing too quickly?
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
There are several factors to consider.
Many symptoms are associated with long COVID‑19. As mentioned earlier, some of these symptoms are common with other diseases.
You really have to assess the whole patient. You have to look at their medical situation before and after the infection. In order to make a diagnosis, you have to understand how that person's condition has evolved. At the moment, it's difficult to make a diagnosis, and that's a problem. The patient must have at least one symptom that persists for two months. However, symptoms can fluctuate over time and can even occur after recovery. They may occur after a month or three months, depending on the definition used.
Diagnosis is complicated for physicians who are unfamiliar with the symptoms and the tools that can help them assess some of the less obvious symptoms. Diagnoses such as postural orthostatic tachycardia syndrome, which has already been mentioned, require expertise.
When physicians don't necessarily have that expertise, we need to find ways to equip them. Otherwise, they need to be told what resources they can refer their patients to and where those patients can really be assessed in their entirety.
Liberal
The Chair Liberal Sean Casey
Thank you, Mr. Garon.
Next we have Mr. Davies, please, for six minutes.
NDP
Don Davies NDP Vancouver Kingsway, BC
Thank you, Mr. Chair, and thank you to the witnesses for being here.
Dr. Falcone, just so this is clear to me, is there a standard clinical case definition of “long COVID”?
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
Yes, there is the one that was established by the WHO.
NDP
Don Davies NDP Vancouver Kingsway, BC
Has the Canadian medical establishment adopted that definition?
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
We usually point to it. There's also one that was established by the CDC, so we tend to observe both definitions. It just becomes a question of whether you use the cut-off of four weeks or 12 weeks, and this is really something of debate, because you do see a lot of improvement between four and 12 weeks for a subset of patients. Almost 40% to 50% have this improvement, but then you're left with this other significant chunk of patients where COVID persists for a long time.
As you go beyond that 12 week cut-off, you start to see that the curve plateaus, and then you see what really looks like the phenomena that is a chronic illness.
NDP
Don Davies NDP Vancouver Kingsway, BC
What I'm trying to get a handle on is that long COVID seems like it's real. I'm just wondering if it's recognized by the medical profession in Canada to the degree that it needs to be.
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
It is recognized, like we've mentioned, but probably not to the degree that it needs to be in the sense that, like I said, I think there needs to be more education.
When we are in certain circles, we do see there are lots of doctors who are familiar with long COVID, but I still hear stories, including from my own patients, where it's not being considered or there's uncertainty. It's not as well known as other diseases; it's still really new.
NDP
Don Davies NDP Vancouver Kingsway, BC
Dr. O'Brien, as close as you can, what percentage of Canadians have had COVID-19, and what percentage of those have experienced long COVID?
Associate Professor, Department of Physical Therapy, and Co-Director, Rehabilitation Science Research Network for COVID, University of Toronto, As an Individual
Thanks very much for the question.
I do not know off the top of my head how many Canadians have had COVID, but in terms of some of the data on the prevalence rate, it's been estimated that anywhere from 10% to 30% of individuals can develop long COVID, and a lot of it is variable, depending on how the literature defines long COVID.
As Dr. Falcone mentioned, there was a rapid review done in Ontario looking at a high-level review of evidence of the prevalence of long COVID, and it included a number of systematic reviews with over 10,000 patients, and concluded a pooled, estimated prevalence of 51% to 80% of long COVID.
Now, the definition they used for that rapid review was for anyone who experienced a symptom at four weeks. As was mentioned earlier, the World Health Organization defines long COVID as symptoms that persist after 12 weeks, and do so for a duration of two months. I think that's why we're seeing so much variability in the prevalence. There really hasn't been a universally adopted definition of long COVID.
NDP
Don Davies NDP Vancouver Kingsway, BC
Ms. Goulding, it's funny, but in preparation for this meeting I've been on social media and there's an unbelievable counter-reaction, it seems, to people who are suffering from long COVID.
I'm wondering if you could outline for us some of the impacts that this stigma—I think you used the term gaslit—is having on long COVID patients across Canada.
Founder, COVID Long-Haulers Support Group Canada
It is critical, and it is causing damage to being able to recover. If you don't have a doctor who can diagnose you or who believes that you have these issues, they're not going to be giving you support and sending you on to the specialist you need.
What I wanted to mention was that in the beginning of the pandemic the focus has always been on deaths and recoveries, and long COVID has always missed the mark in being part of the conversation, so this goes way back, and it's why there is little information. As Ms. Falcone was saying, doctors at this point today are still under the assumption that long COVID doesn't exist in some smaller...areas. You'll have to excuse me; I have issues with my brain after having COVID and with long COVID, and I struggle to find words sometimes, so the word slips me there.
The point that I'm trying to make is that it is very difficult without the support of a doctor and without the doctor having knowledge, and this is one of the huge issues that patients are having: finding a doctor that has information and has basic knowledge on how to recognize the symptoms, because we don't have a positive test result to go on. It needs to be a clinical diagnosis, but if the doctor doesn't have an understanding of what they're looking for or how to diagnose properly, or of the channels of treatment and where to send us, then we don't have a hope of recovering or of being heard. This is where depression and anxiety start to fester, and people are left without supports, not even being able to cook or clean, or just being disabled, without functionality in society.
It's a really vicious circle, like I mentioned. I think one of the most important things is that doctors really need to have an understanding. This information flow needs to start from the federal level, and it needs to be broadly disseminated so that they can recognize this.
Liberal
The Chair Liberal Sean Casey
Thank you, Ms. Goulding and Mr. Davies.
We will go back to Dr. Ellis for five minutes, please.
Conservative
Stephen Ellis Conservative Cumberland—Colchester, NS
Thank you, Mr. Chair. I appreciate that.
One of the things in medicine that we need to learn from is to have a patient-centred focus and, Ms. Goulding, thank you for being here.
We've just finished a health human resource study. One of the concerns I have is about not only finding a physician or health professional who believes your diagnosis, but actually accessing a health professional at all. Is this something that you've heard from your members has been a difficulty?
Founder, COVID Long-Haulers Support Group Canada
The words I was looking for were “rural communities”.
Yes, absolutely, that's a problem. People in the Northwest Territories, Yukon, isolated communities and indigenous communities, people out east in the Maritimes and in provinces and places that haven't had a large case count of COVID don't go on to have an understanding of what long COVID is, because in the beginning they just didn't have the case count. They just didn't have the experience of seeing it in their communities, but now this is changing with the broad infection from omicron. People everywhere are getting infected and children are getting infected.
Yes, it is a disability to not be in an urban community to have access to care, to have access to doctors who have knowledge and to have access to actual rehab centres, because the centres that you see are provided to communities with high case counts in urban centres.
Conservative
Stephen Ellis Conservative Cumberland—Colchester, NS
Thank you very much.
That makes perfect sense.
Mr. Chair, through you, once again to you, Ms. Goulding, just to be clear, oftentimes in committee and in government we work really much better with just a few simple things. Could you give us three top things of what you would like to hear from a patient's perspective of what you think we could do?
I understand that perhaps you don't always understand how the government works, and that's no problem, but if you could, just give us three things and say, “Hey, here's what I think the government should do: A, B and C.” Could you tell us what they would be?
Founder, COVID Long-Haulers Support Group Canada
Thank you so much for your understanding.
What I think would be really meaningful to long-haulers would be the acknowledgement and messaging in public health and across the nation that long COVID is an issue, that it does exist and that people need to take the necessary precautions not to catch COVID so that they, in turn, don't catch long COVID because it's not a thing that you want to mess with and you certainly don't want to have your life thrown to the wind because of this virus. That would be number one, the messaging.
Number two is definitely funding research. This is really a top priority, and a plan of execution needs to be made to coordinate all of the provinces and territories to really put a focus on this, prioritizing it. We need massive funding. The studies that are being done now with the $20 million that is allocated can end up being piecemeal studies, whereas we need large longitudinal studies that will really look at the underlying mechanisms of what long COVID is. We need clinical studies set up. That's very important. That's number two.
Number three would be the treatment of long-haulers. It needs to be accessible to all. This is an issue, a challenging issue, with the health care communities running on empty right now, and to bring long-haulers in on top of that is a crisis. It needs to be expedited and really looked at through a magnifying glass in terms of how critical this is. There are studies out of Australia that are already noticing the effects on their economy. The workforce is being affected and women are disproportionately suffering from this disease and are falling out of the workforce. These are caretakers, families, caregiver roles, just everything is being affected.
Those would be my three points.
Liberal
The Chair Liberal Sean Casey
Thank you, Ms. Goulding and Dr. Ellis.
Next we're going to go to Dr. Hanley, please, for five minutes.
Liberal
Brendan Hanley Liberal Yukon, YT
Thank you to all of the witnesses for your testimony, and particularly you, Ms. Goulding, for having your personal experience and your advocacy, despite your own challenges. It's fascinating and so important to hear your testimony, but I'm going to give you a break.
Dr. Arts, you talked about the advantage that we have, with so many people infected, as a kind of potential for cohorts. But I'm going to pivot to Dr. Falcone for now and ask if it is also a disadvantage that COVID is now becoming so common? I think I know more people who have had COVID than have not. Maybe I'm mixing in the wrong crowds. Personally, I've been spared so far, but is long COVID clinically distinct enough that we will still be able to recognize it given the increasing prevalence of people who have had COVID, or will we really be dependent on that search for biomarkers?
Director, Post-COVID-19 Research Clinic, Montreal Clinical Research Institute, Attending Physician, Infectious Diseases, Centre hospitalier de l'Université de Montréal, As an Individual
I think we will certainly be able to distinguish the patients who have long COVID from the patients who had COVID but did not develop long-term symptoms, although that becomes even more concrete when you look at the evolution over time, because not everyone will go on to develop long COVID exactly at the same time point, or the symptoms might not be picked up or diagnosed at exactly the time point that one would want.
Of course, with the fact that there are more and more cases of COVID, what you lose is the cohort of patients who never got COVID, so your negative controls so to speak, which help you understand a little bit, tease out some of the background of the infection itself and how that distinguishes it from long COVID. That being said, this highlights all the more the need for, yes, larger cohorts that are followed longitudinally and, yes, diagnostic biomarkers. But the diagnostic biomarkers will have another purpose as well. They may help tease out the diagnosis of long COVID from other illnesses that have some similarities or some overlap. They will also be a support for the clinicians who might not be able to fully grasp all of the symptoms and all of the nuances of this complex entity. It's in that sense, too, that we would like.... People deal well with an objective finding, so if we could find that, it would be helpful.
Liberal
Brendan Hanley Liberal Yukon, YT
Yes, and it was more in that latter category of people presenting with non-specific symptoms who may have had COVID, how to distinguish the long COVID from perhaps other syndromes for which we as clinicians have always had to tease out what's going on, especially when we're talking about therapeutics.
I want to use my remaining time to turn to Dr. Arts. It's really interesting to hear your observation about the postpandemic effects and how you see a peak of neurodegenerative diseases in the years following. Surely we must then be seeing that with seasonal influenza and looking for connections. I know that perhaps we are seeking to better define the connection. I'm wondering if you could comment on that relationship. What is the common path of physiology potentially between influenza and neurodegenerative diseases and COVID and neurodegenerative diseases? Is it the inflammatory response? Given that they're very different viruses, is there something else, or is that still what we're looking for?