The Covid ’emergency’ is over, but long covid isn’t going anywhere

CLIP You are listening to a Frequency Podcast network production.

Jordan Heath Rawlings If you are so inclined, you can view this as a hopeful sign or as a willful ignorance of reality.

CLIP It’s therefore, with great hope that I declare COVID-19 over as a global health emergency.

Jordan Heath Rawlings It is not for me to determine what qualifies as a global health emergency.But it is worth noting that the WHO did not say covid was gone or over or any of those things. And as a layperson, I would add if we are not taking any mitigation measures anyway, and most people are just living their lives as they were pre pandemic. Then what does it matter practically what the WHO wants to call it?

Covid is still out there. People are still dying pretty frequently, in fact, and it seems something many of us are ready to accept. But of course that isn’t true for everyone. If you look closely, things are far from normal. I mean, for one thing, we still get letters like this.

CLIP I have long covid after an infection with Omicron. I was previously super healthy and busy, fully vaxxed and was 23 at the time. You could say I’m the token healthy person, but I’m also just very loud raising awareness to this, especially with my research background. It’s been 15 months of symptoms for me, and I’ve had to leave my previous job. And now I’m considering leaving grad school as well.

Jordan Heath Rawlings That sounds awful. And if we aren’t prepared to control the virus, we’re going to have to learn to live with long covid too. So putting aside the newest strain of this thing going around, let’s talk long term. What do we know by now about long Covid? How many people develop it? Who is most vulnerable? How do we define it? Treat it? Prepare for its impact years into the future? Here is what you need to know.

I’m Jordan Heath Rawlings. This is The Big Story. Dr. Kieran Quinn is a long covid researcher and assistant professor at the University of Toronto. He is also a general internist and a palliative care physician at the Sinai Health System. Hello, Dr. Quinn.

Dr. Kieran Quinn Good morning, Jordan.

Jordan Heath Rawlings It is a good time. I don’t know me if a good time is the right way to put it, but, uh, we are recording this on a Friday as I speak. The World Health Organization has just declared that COVID-19 is no longer a global health emergency. How do people like you who are dealing with long covid patients and researching this stuff, feel about that?

Dr. Kieran Quinn I’d say it’s an interesting time, Jordan. Yeah, so. I think we’re all excited, and enthusiastic and just simply wanting covid to go away. It’s been a long three years since the beginning of the pandemic and people are tired. So, I get it and I get the enthusiasm to try to sort of put this behind us. At the same time, many of us who practice medicine and study long covid and the effects of covid are still gravely concerned about trying to put this behind us too quickly. There are still many, many patients I look after who are admitted to hospital and continue to test positive for Covid. Perhaps they’re there for a slightly different reason or a related reason. But Covid is not gone and it’s not going away. And long Covid continues to be a major challenge ahead of us that I think we need to continue to be proactive and prepared for.

Jordan Heath Rawlings We’re gonna spend most of this interview talking about long covid and the research into it and what we continue to discover. But maybe just because you mentioned it, can you give us a sense of how prevalent covid is in Canada right now? Like and what percentage of people do you think have an accurate picture just how much or little of the virus there is around them.

Dr. Kieran Quinn Well, there is some good news, at least to report on that front, Jordan, so the national statistics in Canada suggests that the number of weekly reported COVID 19 cases, so that’s acute covid, are continuing to decrease in line with the long-term trends we’ve observed since January of 2023, so a few months ago.

Jordan Heath Rawlings Okay.

Dr. Kieran Quinn Hospitalizations and deaths due to covid are also decreasing. And let us not forget that they still remain the highest among our oldest adults, those that are 80 plus and older. And so we have to remember that those are vulnerable, individuals to these infections still, even if younger people aren’t getting as sick as they used to. There continues to be the emergence of new lineages such as the X B B variants, which are reported to be more transmissible, but thankfully so far do not appear to be resulting in more severe disease compared to prior variants. But those variants are continuing to increase as the overall share of the total covid burden. So of the variants that are circulating in our country X bbb continues to increase. So I think there’s a lot of good news in that, and you know, there is reasons to be positive and optimistic and also reasons to remain cautious around prevention of infection.

Jordan Heath Rawlings When we talk about acute covid infections or even just, uh, covid infections as a whole, what do we know by now about the risk of long covid from an infection someone gets today? Can we define that? Like I’ve seen one in 10 kicking around. I’ve seen one in 20. What do we know about that?

Dr. Kieran Quinn The biggest challenge Jordan, that we’re facing continually from a disease monitoring and research and clinical care perspective when it comes to long covid is there’s still a lot of uncertainty around the definition, exactly what is long covid. And so if you don’t start from the same definition, it’s difficult to estimate how many people have it now. Most jurisdictions around the world, including Canada, use the World Health Organization’s clinical case definition that was defined a couple years ago now, which is simply that people have persistent symptoms following a suspected or confirmed SARS COV-2 infection that have lasted for at least eight weeks and are not due to another cause. And so the best data we have on the prevalence, sort of how common that is in our society comes from the national survey that was done by the Public Health Agency of Canada in collaboration with Statistics Canada. That was finished in August of 2022. That survey reported that approximately 1.4 million Canadians, just roughly around 4% of our entire population are living with long covid according to that definition.

Jordan Heath Rawlings Wow.

Dr. Kieran Quinn How common is it after COV-2 infection or Covid 19 infection, it’s estimated that approximately 10 to 14% of people will develop these persistent symptoms after that infection. Now those numbers are in line with other national surveys from the United States and from the UK. But it appears that as we improve our immunity, that our rates of vaccination go up, which appears to be protective. Hopefully it’s suggesting that long covid is becoming less common as far as how many people are expected to develop it after a covid infection, yet still important people are developing it and we must not forget that.

Jordan Heath Rawlings I’m really glad you brought up the definition because that is something that I don’t understand. And I guess my first question around it is, the definition you gave of, you know, symptoms lasting longer than eight weeks. How much variance is there in the actual cases because I keep reading stories of people who’ve struggled with it for a year now, or people who get it and, it lasts a little while, a little longer than they thought, and then it kind of gradually goes away like it just seems to be a huge spectrum.

Dr. Kieran Quinn Yeah. And I think the huge spectrum is the key term there, Jordan. So first of all, recovery or the trajectory of people’s symptoms following their acute infection is not a linear or a straight line. It’s a series of peaks and valleys and some people can recover completely for a little while, like they have no symptoms. And then all of a sudden they’ll come back with this, you know, wave of debilitating symptoms. And sometimes those last for a very long time and sometimes they wax and wane. Now, not only is there that variation in the pathway or the trajectory of those symptoms, there’s also huge spectrum in the severity or how much those symptoms affect somebody’s daily life. So from the national survey in Canada, approximately 20% or one in five people who were reporting long covid symptoms indicated that those symptoms almost always, or always interfered with their ability to operate on a basic level every day. So you can get a sense that, thankfully, most people don’t necessarily have symptoms that are so severe that they’re unable to work or function with their families, but a substantial minority, one in five of those people does. And that’s where we see a lot of the suffering going on in the people that I’m asked to see and look after as a clinician.

Jordan Heath Rawlings What about the symptoms themselves? I think a lot of people assume that they are covid symptoms that stick around. But once again, I’ve heard so many anecdotal stories about really weird symptoms like, do we even have a definition of which symptoms count towards long covid?

Dr. Kieran Quinn Again, the problem is rooted in that definition and the short answer is no. It’s any symptom that is in time, that time period of a three months after your covid infection is persisting. So that could be something as common as fatigue, which is the most common, really reported symptom related to long covid. But it may also be a loss of taste or smell. It could be something like a cough. So there are more than 200 symptoms associated with long covid, and I think that’s what makes it particularly challenging as clinicians to determine whether this is related to your covid infection and it’s now long covid or is this something else. And that’s where you get a lot of variation in clinical practice, and I think some people experience some frustrations with that as well.

Jordan Heath Rawlings When you talk about the difficulty of operating without a definition, how much of that is, for lack of a better term, disagreements or fights between different medical boards or doctors or whomever? And how much of it is just simply we don’t understand or know enough about this disease yet to define it?

Dr. Kieran Quinn Yeah, I think it’s more the latter. Most of us are not interested in being territorial or being right for the sake of being right. We’re interested in helping people and the best way we can help people is to have a better understanding of the diseases that we’re trying to treat. In this case, long covid and unfortunately, although we’ve made a lot of headway in our understanding of the disease and its processes. We still have a very limited understanding about the underlying causes and biology of long Covid. In fact, we are beginning to believe that long covid as a syndrome isn’t one single disease. It may in fact be several subtypes or clusters or phenotypes that people have called them long covid. And a great analogy that one of my colleagues, came up with was think about cancer. Cancer isn’t one thing. Cancer is many things you get. Lung cancer or colon cancer or breast cancer. And even within those cancers, there are many different subtypes of breast cancer or lung cancer or colon cancer. So many of us believe, as our understanding evolves that there are probably many subtypes of long covid, and we’re just starting to uncover the surface of what that looks like and what its underlying causes are, which will hopefully help inform our treatments in the future.

Jordan Heath Rawlings What do you do to uncover that? How does it work?

Dr. Kieran Quinn A lot of it comes from basic biomedical sciences and the lab work that many of my colleagues do that is far beyond my understanding. Most time at the cellular and molecular level, it’s trying to understand what signaling pathways and the proteins and receptors that are involved in those signaling pathways lead to, for example, dysregulated or unregulated inflammation in the body or perhaps an abnormal immune response in the body. Those are two examples of of pathways that we believe lead to the symptoms that people experience from long covid. But we still don’t have a good understanding of those pathways and thankfully there are a lot of very intelligent and hardworking people I know who are working on that and hopefully will have some breakthroughs in the near future.

Jordan Heath Rawlings What is it like to research a condition like this in real time as we continue to see new examples of it, new symptoms tied to it, hear new experiences from patients, and yet we don’t have, like we do with so many conditions, you know, years or decades of medical textbooks on it.

Dr. Kieran Quinn Yeah, there’s not that experience of time where we can look back and say, okay, this, this, or this has not worked in the past, and so therefore we could try the following things in the future. My experience is both exciting and frustrating and concerning, and dismaying all at the same time. As a researcher, it’s exciting to be working on trying to discover new treatments for a condition that didn’t exist four years ago. At the same time, When I am in my clinical practice and trying to bridge those research and clinical knowledge together. It’s tough to watch people suffer with their lives. They’ve lost their identities. They’re no longer able to work, they’re no longer able to look after their families. They’re facing great financial hardships, many of them, and there’s little that I can do to help make that better other than to simply listen carefully, to acknowledge and validate their feelings and offer symptom guided treatments where possible. But it leaves me feeling dismayed that I can’t do more for these people.

Jordan Heath Rawlings You mentioned that we have a lot left to learn about this condition, especially how it works and, and if there may be more than one condition. But what have we learned about how to treat it, compared to when it first arose?

Dr. Kieran Quinn I think we’ve come a long way and we still have a long way to go. At the same time, in the same breath. Many centres around the world and in many provinces in Canada have set up specialized long covid clinics. That are a team of multidisciplinary providers who are able to help address the many different aspects or symptoms or issues that people living with long covid might face. We are actively working to study and define the optimal care pathway or models of care to support people living with on covid, and a lot of that starts with our primary care colleagues and so there’s going to be some definite progress on that front in trying to coordinate and deliver better care for people in Canada. There’s a lot of research going on that are aiming to discover new therapies, new treatments, that actually help people directly with long covid rather than simply trying to address some of their symptoms. So, for example, myself and Dr. Angela Chung are on the precipice of launching the reclaimed trial, which is a clinical trial looking to test two new drug therapies to improve the quality of life of people with long covid. And we hope that that enrollment of that trial will begin any day now as we’re just finalizing our approvals. So as just one example about all of the work that’s going on behind the scenes to help accelerate the care and our understanding of this condition.

Jordan Heath Rawlings This might not be your exact area of expertise, but I bet you get, roped into these discussions a lot. When we can’t define long covid and it’s very difficult to determine what exactly the symptoms are and who has it. What kind of impact does that have on patients who are trying to navigate their life around an illness? And here I’m referring to, you know, insurance, time off work, short-term or long-term disability, all that kind of stuff.

Dr. Kieran Quinn Yeah, actually a lot of what I do as a clinician, Jordan, is help people navigate that jungle or that quagmire of insurance and forms. Because that’s often, that’s where I can at least make the greatest impact at the current times and the treatments that we have. So I think there are two things that happen. One is that society and healthcare providers, we don’t feel comfortable with uncertainty. Humans by nature are uncomfortable with uncertainty and when there’s uncertainty on a definition, some people’s responses to simply dismiss it. As not a real thing. And certainly we’ve seen lots and lots of reports unfortunate to see of many people with living with long COVID, reporting that they’ve been dismissed by their healthcare providers, that this is all just in their head, that long covid isn’t a real thing. And that translates also into disability and insurance claims. There are many insurance companies. You know, anecdotally that have declined or refused insurance policies or claims because people couldn’t prove they had long covid or couldn’t prove they had covid because they didn’t get tested at the time that they had acute covid, and there was huge variation in testing that changed over time across Canada. So I think it’s really important to get some consensus and establish a definition as best as we can to help acknowledge and move things forward for people who are living with this condition.

Jordan Heath Rawlings If I told you that a magical genie would answer one question you had about long covid that we don’t know the answer to right now, what would it be?

Dr. Kieran Quinn If a genie in the bottle like Aladdin could magically appear and give me an answer to something? I think right now it would be what is causing long covid. If we have an understanding of what is driving, it’s mechanisms underneath it all, that will inform targeted treatments that we can test further that will inform acknowledgement that it’s a real disease that will inform insurance companies and healthcare providers to support people that they need. I think if we had a better understanding of the disease, we would be able to find treatments that work. Now that being said, we are still able to test treatments even if we don’t understand what’s going on underneath. Because sometimes, and quite often in medicine, things just seem to work. And as long as they’re safe, that’s okay. We’re here to help. We’re trying to make things better. Although, as humans cognitively, we always want to understand why. And I think that breakthrough will help really accelerate the field across the world if we were able to have a better understanding of what is causing or driving the symptoms underneath it all at the biological level in people.

Jordan Heath Rawlings And what’s one thing our healthcare system or systems, I guess, could do to either help more people struggling with this or just simply improve our approach to long covid in general?

Dr. Kieran Quinn Thankfully right now, it’s something that we’re all working on, but it’s a health equity issue and care delivery and access to care right now is a major problem. There are major inequities in people’s ability to access long covid care. There are only a handful of publicly funded long covid clinics across the country. The wait times for many of these clinics are six months up to a year. And a lot of them, as few as they are, are situated in dense urban areas. So if you live in geographically remote areas, it’s very difficult to access healthcare. The other issue also comes to the sort of preexisting things we know about limitations and access to healthcare around your socioeconomic status such that, marginalized or economically disadvantaged individuals, systematically have a harder time accessing healthcare for all types of conditions. And there is also a spectrum in those same people on the severity of Covid, which is a recognized to be a risk factor for long covid development. So in other words, if you’re somebody who is poor or economically disadvantaged, you’re more likely to get severe covid and in turn, more likely to get long covid. And then be one of the groups of people with the hardest time to access specialized care to support you. And that isn’t just healthcare. That’s the social and economic supports that you need as well, whether that be insurance or long-term disability. I think that’s one of the major issues that we’re facing. The solution is to standardize care, to develop a coordinated provincial level care pathways, that help people connect to the system and get the care that they need. And thankfully, that’s something that we’re working on presently.

Jordan Heath Rawlings My last question is a practical one. We get people writing into this show, obviously, a couple of people have written in to ask about, uh, long covid specifically. I know there are a lot of people out there who are struggling with the definition as you’ve explained. So if someone’s listening to this program now, and let’s say they had covid 5, 6, 7 weeks ago, they’re still not feeling right. They’re wondering why it hasn’t gone away. What would your practical advice to them be? What are the steps they should take?

Dr. Kieran Quinn The first and foremost is if it’s affecting your ability to function or your overall well-being, then you need help. And that needs to be help from your primary healthcare provider. Now, that’s a separate issue in Canada where there’s a lot of shortages of primary care clinicians for people. Somewhere between 20 and 30% of people in Canada are, do not have a primary care provider. But if you’re lucky enough to have a primary care provider, start with them. If you’re not lucky enough to have a primary care provider, you still should seek help from wherever you can get your healthcare from, and generally that can be even something like a walk-in clinic so that you can start to get plugged into the system and try to find the help and referrals that you need. There are also an incredible community of people with lived experience out there. And I think that’s really one of the most helpful things for people to be validated and acknowledged and share experiences and share solutions with each other. Because they’re the experts in this, they’re the ones who are living with this. And there’s been a great patient advocacy movement that’s happened as a consequence of this and really helped to bring this condition to the forefront. But it starts with just recognizing that you need help and that comes from the acknowledgement that if your life, your overall wellbeing, or your ability to look after your family or work are affected, that’s the signal that you need help.

Jordan Heath Rawlings Dr. Quinn, thank you so much for this and thank you for the work you’re doing on this.

Dr. Kieran Quinn Jordan, thank you so much for covering this important topic this morning, and it’s been a really enjoyable conversation.

Jordan Heath Rawlings Dr. Kieran Quinn, a long covid researcher and assistant professor at U of T and a physician at the Sinai Health System. That was The Big Story. For more head to thebigstorypodcast.ca. You can always talk to us on Twitter @thebigstoryfpn. Or you can write to us as one listener did, whose email we read in the intro. You can call us too and leave a voicemail if you’d prefer. We play your story if we do an episode on it. That is 416-935-5935. And of course, whether it’s story ideas, personal stories, or just feedback, we always appreciate hearing from you. The big stories available everywhere podcasts are available, even on smart speakers where you can ask for it by saying play The Big Story Podcast. Thanks for listening. I’m Jordan Heath Rawlings. We’ll talk tomorrow.