GMT20240517-165013_Recording

The discussion focuses on the current status of COVID-19 and its impact on immunocompromised patients, their families, and caregivers. Little is known about the outcomes and experiences of transplant recipients during the pandemic. Transplant recipients have been disproportionately affected by COVID-19, with higher hospitalization and mortality rates. Limited data is available on the effects of long COVID in transplant recipients. The Canadian Donation and Transplant Research Program (CDTRP) conducted the PreventCOVID study, which found that COVID vaccines were safe in transplant patients, with additional doses improving immune responses. However, preventative measures are still needed. The CDTRP is now leading the PreCOVID study to address critical issues and therapeutics for transplant recipients. The study aims to assess COVID-19 therapeutic safety and effectiveness, mental health impacts, and economic burden for transplant recipients. Recruitment for the study has begun, but there Hello, everyone, and thank you for joining us and listening in to today's discussion between the Canadian Donation and Transplant Research Program, the Canadian Immunocompromised Advocacy Network in 19-0. My name is Manuel Escobedo, and I'm the Director of Patients on the Donor Partnership and Knowledge Mobilization with CDTRP. And before I pass it on to our panel for introductions, I just want to spend a couple of moments setting the stage for today's discussion and a summary of CDTRP's COVID-19-focused research. So we're here today to discuss the current status of COVID-19, and, of course, there's a particular emphasis on how immunocompromised patients, their families, and caregivers are navigating and, quite frankly, surviving the pandemic. Today's conversation, I feel, is very particularly relevant as we are now in the fourth year of COVID-19, and while much of the world has seemed to have moved on, it remains a critical issue for many of us, especially, of course, as those who are immunocompromised. I'm a kidney transplant recipient and as a kidney transplant recipient and someone who works in the transplant field, today's conversation is also important because despite us being in year four of the pandemic, little information is really known about the outcomes and experiences of transplant recipients, families, and caregivers. Some of the information we do know isn't entirely positive as well, maybe I'll talk a little bit about that. From the early days, transplant recipients were disproportionately impacted by COVID-19. Just median hospitalization rates and mortality rates were higher compared to the general public. For people who have comorbidities, we take immunosuppression medication so our transplant grafts don't fail, and because of this, and other factors, but because of these two, we're at a higher risk of severe outcomes. There's also limited transplant-specific data coming out as well, and this remains true today as data, for example, on long COVID is limited. In transplant recipients, we don't know the effects of long COVID. Two studies, there's been about two studies that have come out, don't really provide that much guidance on where we are with long COVID. And some of the information that we did know related to transplants and donation was also limited. So one of the concerns and research priorities that the CDTRP heard both pre and post-vaccination focused on vaccine safety and effectiveness. Some questions that our patient partners asked included, are vaccines safe, are they effective? Are vaccines effective with evolving variants? What about breakthrough infections? What about with additional doses, are they still effective, do they remain effective, are they still safe? I think this is really where research comes in, where research can look at these questions that transplant recipients and other immunocompromised patients are asking, and where researchers and clinicians prioritize these questions to try to fill in the gaps. From my perspective, the goal with research is really about informing transplant recipients and other immunocompromised patients and empowering them to become partners in their care. So given the early questions that the transplant community had about safety and effectiveness, the CDTRP mobilized and led the prospective evaluation of COVID-19 vaccine in transplant recipients, it is a mouthful, but PreventCOVID for short. And really, the goal of the PreventCOVID study was to study the immunogenicity and safety of COVID vaccines in both solid organ and stem cell transplant recipients. And several big conclusions came out of this. Number one, we learned that COVID vaccines were safe in diverse transplant groups, including that safety maintained after multiple doses. And while vaccine responses were lower compared to the general public, additional doses did appear to increase immune responses. Boosters also increased responses to new variants. And perhaps just as important, though, researchers concluded that preventative measures, additional preventative measures were needed to protect recipients. And as the pandemic shifted, so did patient concerns. The CDTRP has held national workshops to understand the ongoing, real-time, and evolving challenges of transplant recipients and their families, because we know it impacts everybody in the household. These workshops began in 2021, and they really allowed us to understand the different research priorities coming out of the different groups, both families and caregivers and transplant recipients. And it's really through this shifting lens of priorities that the CDTRP mobilized to lead a new study, another multiple, addressing critical issues and therapeutics emerging in transplantation and COVID-19 for transplant recipients, so PreCOVID for short. As the director of patient-family donor partnerships and advocating transplant recipients, I'm very proud to say that central to PreCOVID is regular engagement and co-development of research priorities and knowledge mobilization planning with patients, their families, caregivers, but also the broader pan-Canadian transplant community. And through these workshops and through the work that we're doing through PreCOVID, the priorities that we're wanting to address is the continued assessment of COVID-19 therapeutic safety and effectiveness in transplant recipients, assessing mental health impacts of COVID-19 on patients, their families, and developing concrete strategies to help address them, and then analyzing the economic burden and value of emergent therapeutic options for transplant recipients. So this is a multi-site pan-Canadian project, and we are very ambitiously wanting to recruit 2,500 transplant recipients and 2,500 caregivers or family members, recruitment to begin this summer. Now, initial recruitment has already started at one site, but we are experiencing some barriers. I think this is also another reason why this conversation is important. You know, we want to provide a real-time update of COVID-19. All of us at this table know it's not over, but I think we can agree that the issue isn't talked about nearly as much or with the same sense of the urgency of years one, two, and even three. And what that means is that immunocompromised patients don't have all the tools to keep themselves safe. So with that preamble, thank you for listening to me on that. I really want to turn it over to the panel. Maybe let's go around, we'll introduce yourself, the organization you're presenting, and just start with very basically why COVID still matters. And Jai, I will pass it off to you first to get us started. Sure. Thanks for having me. And good introduction, Manuel, if it wasn't too long. My name is Jia Hu. I'm a public health physician and a family doctor. I was pretty involved as a public health physician during the pandemic and co-founded a not-for-profit during that time called 19to0, which at the time really was aimed at sort of increasing uptake of COVID vaccines. Sort of later evolved into increasing uptake of other sort of preventive health behaviors like vaccinations and cancer screening. The other thing I do is I help found and lead an organization called the Canadian Immunocompromised Advocacy Network. And that sort of formed from concerns that a lot of immunocompromised patients had around COVID more generally. And so to your point, I do think that while the world has largely moved on from COVID, I think COVID certainly represents a major threat to health and wellness still, particularly for immunocompromised patients. I mean, there's a whole lot of other infectious diseases floating around too as well, right? And I think today, just to be topical, we saw a child die of measles in Ontario for the first time in probably half a century. And I think that anyway, the point is, I think that one, COVID and other infections are still and we need to continue to do more to protect people who are most vulnerable through a number of strategies. And that's sort of one of the really important things that I've been aiming, working to do for the last several years. And so that's enough for me. Maybe I'll hand it over back to you and the next few can introduce themselves. Sure. Thanks for that, Jai. Michelle? Hey, Manuel. So my name is Michelle Burley. I am a healthcare advocate and consultant. I actually jumped into this space in October 2020 when I founded an online support group called Immunocompromised People Are Not Expendable and really started focusing on the experience of immunocompromised people at that time and working towards ensuring that their voices were heard in the healthcare system and in the general public, given what was happening with COVID-19 at that point. As of August of last year, actually, I joined JAW as a co-chair of the Canadian Immunocompromised Advocacy Network as well. I'm also a founding steering committee member for the International Immunocompromised Advocacy Network. So definitely have a global view of what the experiences of immunocompromised people across the world really and working very hard to ensure that their experiences and needs stay centered throughout the discussion of not only COVID-19 but all infectious diseases. Thanks for having me. Thanks for joining us, Michelle. A lot of experience you bring to the table, so very happy to have you and Jai, of course, as well. Ray, and then maybe we can jump to Sherry. Okay. Okay. I am Ray DeVries, and I received a new heart in 2012. So I'm a heart transplant recipient. But what I really am is I'm an expert in the water field. So I've been consulting in water and wastewater all around the world for my entire career. I just happen to also be a patient. But one of the things, I'm a technical person, an engineer with an MBA. So I think it's really important to look at this in the broader context, I think. And the reason I've been involved now, I think, for three years with the CDTRP is because I think the voice of the patient is very important. And it tends to be a practical voice. We want to get on with life. And I think one of the things that I really like about this particular study, the TREAT COVID study, is the fact that we do have three dimensions we're looking at. Where in the past, we've looked very much at pharmaceutical views, and so medical views of this. But in day-to-day life, I think, Shah, you were sort of referring to this a little bit, it's much broader than that. How do we go about our normal lives, whatever that is, to do our work, to go to school, whatever it is that we do? And that goes beyond just vaccines. The two dimensions I am particularly excited about in this particular study, one is the mental health issue. Is no matter what, if people think, oh, COVID is no longer around, you know, it's sort of, I'll call it the stick in the sand sort of, stick your head in the sand sort of mentality. Then, oh, it must not exist. Well, for immunocompromised patients, it continues to exist no matter how many heads are in the sand. So you still need to stay vigilant, whether it happens to be COVID or something else. And when you're in a state of constant worry or stress, something else may be coming around the corner. It hasn't gone away. From a mental health perspective, which I think is extremely important, the supports that were maybe not in place the way we would have liked to have seen them in place during COVID, whether it's information that's readily available or someplace you can go to feel a little more comfortable that, hey, people are looking at this and worrying about this, that, you know, the money is sort of moving away now from that. And we're trying to, I think, get the message across that those situations still exist. They have not gone away. So the mental health piece is important for me and for us, I think, in general. And the other part is the economic piece. It never really gets talked about much because we tend to go with, we're diving into the vaccines. And I don't worry about that so much because a lot of people are on that. But, you know, the economic piece, when you see some patients, they can no longer go to work. Well, that's a big deal, you know, and because they're either so worried, so it's a mental health issue, or they're immunocompromised, so they really don't want to get an infection, so they stay home. Well, when you're a patient, and suddenly, say you're the breadwinner in the family, and you no longer are able to do that, that's a big deal. Nobody really paid much attention to that. So I think what I really like about this is that we're bringing a voice to the patient and the practical realities of being in that situation. And I think it's extremely important. So that's my sort of position on this. I'm glad we're looking at it, and I think we can't stop looking at it. I'll quickly jump in there, Ruka. Thanks for your comments. I think those are really good, good points, and I'm with you along the way, that I'm really happy that we're looking at this issue, both the mental health and financial aspects. I think, you know, with true COVID, it's framed as a COVID-19 issue. But I think especially from transplant recipients, and I think with other immunocompromised patients, we're probably in the same boat, but, like, we know transplant recipients, you know, folks with kidney failure, folks on dialysis, and I speak to that because that's where I, that's, you know, kind of my experience, where I come from. We know that the research results are that, you know, 50% typically experience anxiety issues, typically experience depression issues, that there's fatigue, and there's all these other concerns that are impacting mental health. And because of that, you know, speaking with, for dialysis, dialysis is a full-time job. As an example, you know, you're going to the hospital three times a week for four hours just for treatment, plus the time that you are on the machine, or the time you get prepped for the machine, you drive to the hospital, you're taken off the machine, and you get home. So when I did that, I was, that whole experience was about six hours. Now, I was much younger when I, when this happened. I lived at home. I did not have to worry about that financial piece. I had my family, who was my support system. But we know not everybody's in that same boat. So patients already experience that financial burden, and COVID has only made that that much worse. We don't know those experiences of themselves. So like I said, just to reiterate, I love that we're focusing on that financial piece and we actually get you to find out what their experiences are and develop some strategies, perhaps, and programs of how we can support them. So thanks for bringing that up. Now, Sherry, I'll turn it over to you. Hi. Nice to meet all of you. New faces. Great. So my name is Sherry Logan. I am the mother of a pediatric liver transplant recipient. And my involvement, particularly on this project, is a co-lead, similar to Rink, in the Treat COVID project. So it is something that we've been brought on from the very beginning. It's very much a bottom-up approach where patient partners are driving the priorities. And throughout the different stages and phases of the pandemic, those priorities, we have seen them shift and change somewhat based on what is going on in the community, what policies are there or missing, so that we can try to move on with life as well. And often, the lack of support and awareness and information, misinformation, disinformation, policies that are missing to protect us certainly lands us in this unknown space that can be really hard to figure out a path forward. So as you mentioned, even before the pandemic, there is layers of uncertainty in this non-linear health trajectory that we have in front of us. It is something that has, as Manuel mentioned, even for caregivers, there is an over 50% chance of PTSD, health anxiety, depression that already exists. And then adding additional layer of the pandemic on top of an existing scenario where there are certain battles that we're facing to begin with can be really challenging to navigate. And particularly at the beginning, when all of these policies were in place to protect everybody, that actually felt in what we were seeing through our studies, that actually felt like a bit of a safer time because everybody was living the same way, under the same protection and the same rules, and we belonged to that same group of everybody. But once those policies changed and we became a whole lot more vulnerable, that's when life became smaller and a whole lot more fearful on how to do this. The lack of information that would have been great to have was not there. As the pandemic continues to change and looking at added exposures to COVID, if one has already had an exposure and then adding another exposure and how that, if there is a cumulative burden, these are huge areas that are missing already, and how effective are our kids and families protected from COVID-19? And then balancing the needs of all family members when you have a vulnerable child going through her teenage years who just wants to be like all of her friends and trying to adapt and really missing out on so many childhood experiences, especially in the teenage years. And then a sister who is also potentially wondering how she can move forward and have her peers but also feel torn because a family member is in need of her support and her protection and to live a certain way. So it has been really challenging as a family going through this and balancing everybody's needs, the safety, and even often caregivers who pitch it as mental health versus physical health. And often those are at odds in trying to find and navigate a path forward because at one point you're compromising mental health if you function a certain way and ensure your safety and protect as best as you can, but at the same time, or risk your physical health to support mental health and allowing children to fit in and feel like they belong amongst their peers more. And having to let go of some of these safety measures. So it is a really hard avenue to move forward when there is so much uncertainty. And really, at the end of the day, the message is practice what makes sense for your family. And it's not a medical recommendation. It's lots of uncertainty in it. And so that's a really hard place to live. So needless to say, a lot of these dynamics and complexity that we're talking about from patient partners are front and center to the project that we're doing, which I think is so important. And as things pivot, it pivots as well. So I guess I'll just go back a little bit. My background is as a patient partner with CDTRP. I've been with CDTRP for over 10 years now. And, of course, this was a project that was really important to me for the many reasons I mentioned. I've also been very much involved in starting up grassroots peer support groups for families that are experiencing liver transplantation. And I've been involved in many organizations nationally, provincially, and internationally in pediatric transplantation. So I'm very well connected with patients in the community and networking. And I believe, you know, ensuring that community voice is captured and that it's not a singular silo, I think that that's really important ways that we are looking as a group at expanding to make sure that, you know, that all voices are coming in to prioritize and shape research and looking beyond the walls of who's actually in the meetings and looking who's missing and who needs to be there front and center. And making sure that as patient partners we're not bringing forth with us barriers for other patients that are experiencing this journey that may be missing from these conversations. So the outreach beyond the walls of people who are in attendance is happening. So that is, like, so wonderful to see. And as a patient partner for, you know, over 15 years, I love the fact that, you know, that reach is going beyond people that are at the table. So, yeah, basically that's really excited to be part of this discussion today. Thank you, Shabrie, for that. Just listening to you speak and a lot of the points that you, and we've talked about this before offline, really resonate with me, especially that piece where, you know, the first two years where you're in your bubble, you know. And I think at that, at least for my person, like for me, you know, I was in my bubble. I was here with my wife. And it was a very scary time recognizing and really trying to, like, conceptualize and understand, like, I could potentially die if I get COVID-19 because that information wasn't there, you know, and the vaccines weren't available. And then once the vaccines became available and other therapeutics became available and policies started changing, public health measures started changing, that's when I was probably more emotional. That's when I was probably more, more so impacted than those first early days where I felt a little bit more scared. And I wasn't sure what I should do and what I shouldn't do and how I should interact with people. But that's why we're looking at the mental health pieces as well. I want to turn it over to Michelle because, you know, as Shabrie was speaking, you know, you kind of had this look on your face and you're nodding and you're nodding. And, you know, in your introduction, you have a global look at what's going on, on the ground, different areas. How did that resonate with you, what Shabrie has said? Maybe talk a little bit more about, like, what you're seeing, given your different hats, what you're seeing of how COVID still is impacting patients and communities and families. Yeah, so if I actually step it back a bit before I talk about current, I heard what Shabrie said about the early days and how there was just this feeling of, you know, unitedness with everyone, where everybody was following the same rules and everybody, everybody was afraid and, you know, people were banging pots and pans and dropping off groceries for their family members who were unwell and all of that. And there was a real sense of unity, I would say, during that time where we did not feel othered at that point. And as the mandates started lifting and, you know, people started posting their outings on Facebook again and talking about how nice it was to hug their parents again, you know, there was just this real strong sense that immunocompromised people had been left behind. And I think that was really the start of the hardest time for this community. And, you know, I think it was Rink who had mentioned, and probably Sherry too, about people experiencing PTSD and mental health challenges. But, you know, many of the immunocompromised people that I've spoken to over the last couple of years have recently newly been diagnosed with things like PTSD and anxiety and depression because of their experience. I mean, just the amount of hypervigilance and mental gymnastics required to stay safe on any given day is really exhausting and a very isolating feeling. And I think that that brings us, in part, to where we are today. It's really interesting, you know, because within the group that I mentioned earlier that I founded, so, again, immunocompromised people are not spendable, but I pain for short. We've got about 1,800 people all over the world. I think we've got 30-plus countries represented, actually, in that group. And it's really interesting because even within the immunocompromised community, there is actually quite a lot of division. Because at this point, you know, we have people, as Rink had mentioned, who want to, you know, they want to be living normal life. They have decided that that is, you know, what's best for their mental health. You know, some of them have probably had to do that calculation of, is this, you know, is it worth it for me to remain isolated and continue taking these precautions to protect my physical health while my mental health continues to decline? Or do I accept the fact that, you know, I could end up seriously ill or even, you know, dying as a result of the physical implications of living a quote-unquote normal life? And so we have this sort of division that is occurring now within the immunocompromised community where there are people who are out and they're living their lives and they're doing their thing. And they're, you know, they've kind of thrown at least some precautions to the wind. And we also have a subset of immunocompromised people who have not left their home in over four years. And so, you know, in a community of immunocompromised people, which you and I, you know, we all know is a very broad term with many, many implications. There are those within the community who feel even more so left behind because they're like, hey, you know, what about me? And I think it's also fair to raise as well a very valid point is that there is, you know, this talk about you got to do what's best for you. And while I understand, you know, I understand that, you know, we have free will in the decision to, you know, to mask or not to mask or vaccinate or not to vaccinate or to, you know, go out to a restaurant to eat dinner or not. The reality is that further creates divide, further creates resentment. It further creates this sort of degradation of community and society and leaves this community at even greater risk. And I feel like that's something that we really need to focus on is, you know, we have this subset of people who, you know, one life is too many to lose. But we're talking millions of Canadians who are kind of left in the dust and feeling alone and still at risk. Well, everybody else is out, you know, doing what they think is right for them. So. Thanks for that, Michelle. I think you just ended with saying, you know, it's something that we need to focus on. It's something we got to step up on. Not your exact words, but, you know, Jai here, public health physician amongst the various hats, you know, you've decided, you know, this is what you want to focus on. Can you talk a little bit about that experience and why? What are you seeing on the ground? What are you seeing, you know, through through your public health lens, through the work that you're doing in the 19-0 and seeing, you know, how does COVID keep impacting immunocompromised patients? Again, recognizing that's a very broad term, but what are you seeing through your lens? Yeah, I mean, I think it's a pretty complicated, complex issue. But I mean, I think at a sort of high level, there's a few things. Right. So, I mean, I think that from a sort of a scientific perspective, we do know that COVID has a disproportionate impact on immunocompromised Canadians. You know, they probably account for about, it depends how you define immunocompromised, because it can be quite challenging, let's say three to four percent of the population, but maybe a quarter, 30 percent of hospital admissions, something like that. And so very disproportionate. So that's one piece. I mean, on the better news piece, you know, I do think COVID itself as a virus has evolved, right? Like it's a bit different than it was in 21 or even 22. And I was looking at some stats from BC. I mean, people don't report as much on this, and it seems as a cause of death COVID is now below flu in British Columbia at least. I don't know what that is for other jurisdictions, but, I mean, the virus itself is evolving. I mean, and, you know, I think the other sort of piece I'll throw out there is that, you know, I think vaccine uptake in the population is very low, right? I don't know what it is in the immunocompromised population. We kind of have a sense of what it is in the very, you know, the 65 plus population. That's historically been quite high, but even that's sort of fallen below 50 percent, right? And so I think that, you know, I may have been, you know, if you want to speak to sort of how people are a bit less concerned about COVID, you know, I think that's a pretty good metric of it. And then, you know, Michelle, you spoke of, like, divisiveness, and, you know, I just at a higher level, you know, I do see how at one point we were united, which was nice, I mean, I think COVID really unfortunately kind of paved the way for a lot of fractures in society and a lot of misinformation, and I think we're banging on pots for about three months. And then after that, you know, it really led to the rise of, you know, I think, you know, trucker convoys and, you know, like whatever we see now, right? And I think it just speaks to some of the difficulties in balancing social policy and also in the rise of disinformation and extremism, which I don't think anybody globally really has a good solution for. And so, I mean, I think all those things put together, you know, practically make for a really difficult environment for daily decision making, you know. You know, 19 to Zero, I think, is sort of focused more on trying to get people to take vaccines, and I think that moving forward, like a part of me is like, we really need to focus on educating people who are at higher risk, immunocompromised, and seniors as opposed to the general population, because a part of me is like, well, maybe that ship has sailed a little bit, which is quite unfortunate. And, you know, I think CYAN is a good vehicle for providing some of that education for a large, you know, subset of immunocompromised patient groups. You know, I totally hear the concerns around some of this mental health stuff. I mean, I think, you know, in the future stage, I think the, you know, one thing that we can do is, you know, provide the information, provide sort of the best set of prophylactic and therapeutic, like, as possible. I mean, I don't think, you know, the world is going to care anymore. Like, I think that, you know, every year we go by, that sort of happens, and we can hope the virus continues to become a bit less severe. I mean, it does evolve, right? And, like, you know, we don't really know kind of what's happening with it, even if it has only been four years. It seems like a long time ago. But I do think, you know, education and support and discussion is key. It's a very confusing landscape right now, right, because, you know, I do think on the vaccine front, you know, I think that recommendations may begin to change at some point. You know, they're still recommending a sort of a spring booster for high-risk populations. Will they do that in the future? I'm not sure. I think on the sort of treatment side with things like PaxLivid, you know, which a lot of people on transplant actually can't get because of drug interactions, but that's sort of the main game in town. You know, it's a big, you know, question as to sort of who will be indicated or used for in the future. You know, and I think that that too is enough. Even the vaccines, right, you know, the provinces and territories have to decide who to cover the vaccines for, right, because the federal funding is going to end pretty soon. And so all of it is kind of a bit fraught. You know, the good news is at least, you know, there's some things we like. While COVID is sort of around year-round, it still displays some seasonal factors, I would say, right? So activity is lower in the summer and we are going into the summer, which is kind of nice, right? And so I think that the best we can do is try to, you know, equip people with the right information that they can to sort of make their own best decisions and support them in their advocacy to support, you know, things like at least some continued attention to producing the information, you know, and continued development of sort of therapeutics and prophylactics. And so, you know, and continued sympathy and empathy, right? Like, and I think that that's probably been the most, the worst thing that's come out of COVID, just like mass societal divisiveness, right? Like I think it's enough to topple government, certainly. It will be toppling governments in the near future, I suspect. And so can we get to some sense of shared humanity, which you often can, I think, if you can have a conversation. So those are my high-level thoughts. A bit rambling, but I'll hand it over to somebody else. I wouldn't mind following up on that a little bit, if that's all right. I think it is. So back to your comments first, Michelle, and then your follow-up, Shaz. I think it is really important to look at the individual sort of needs that are at play here, because I'll say, despite the fact that I went through all of this process, whether it's transplants or COVID, but my wife was a hell of a lot more, excuse me, a heck of a lot more worried about things than I was. And our relationship's like that anyway. She has needs, and I'm not sure they were addressed well. In fact, I know they were not addressed well. And I have different needs, and they were not always addressed, partly because what Sherry was talking about, the misinformation and that. But I have to be truthful here. So I had three vaccines, or three vaccinations, and I also caught COVID three times. First time, it was probably similar to Manuel. I think I shared his experience with us, and I did not have a lot of fun that first time. There was a lot of sweating, and I thought a couple of times, maybe I should go into the hospital. But that triggers a whole set of circumstances as a patient, you may not want. So I thought, all right, I'm going to make it through this. And I did. Second time, it was pretty mild. Third time, it was more like a cold. It really wasn't anything. And so, you know, I made it through there. The biggest problem was just the lack of information, really. They were all kind of reactive. Hey, it happened. I was lucky. Okay, I got through it. We should expect better than that. But I'm also only one voice, and Sherry and I talk a lot. And what I think is, despite the fact of our own experiences, it's our understanding of everyone's experiences that are important. So I know there are two other people that were in the panel the other day that we had. They're up to nine vaccinations. And so, you know, I was down to three. I'm happy now, and I will go on. And so I do have a view, but it's my view. What I also understand is that there are a lot of people that do not share that view. I think we have to represent them because they tend to be the ones, especially when things change, they suddenly aren't heard anymore. And so, again, policies change. Money doesn't get allocated. But they're still there. They are still feeling the same way. So, again, mental health is extremely important, but so are the other aspects of being immunocompromised. So I think that I felt almost guilty when you were talking, Michelle, like I'm one of the people that, you know, I can play soccer again. I am going to play soccer because that's part of my life. You know, whether it's indoor, and first I masked for a couple of games, and then I didn't anymore. You know, I kind of ease into these situations just because I do worry a little bit. But after that, I want to live. And there are a number of people that feel that way, but there are also a number of people that don't. I think we have, and I'll say it, we have a responsibility to represent those that maybe are not in a position to represent themselves or that no longer have enough of a voice. And so I hear what you're saying, but a big part of this is the awareness. And like Michelle was saying, well, a little muddled maybe, but, you know, it's confusing, right? And there is this division that's happening. I think we have to have a discourse that allows it to keep so that we keep talking about it and keep understanding what everyone is going through at whatever end of the spectrum you happen to be on. I think that's our role a little bit. And I think we're all like that. And I have to say, that's why I love working with Sherry, because she was very worried about her daughter, which makes a heck of a lot of sense. If you're a mom, you're going to worry about your daughter. And so she would fight the world, you know? And so it made me relax. Like, no, I've got to get out there. I've got to get on the treadmill. I've got to go play soccer. And I go, okay, look, open your ears, open your eyes, and think, right? And I think that's what's really important here, that we understand the various perspectives. Sorry, Sherry? No, I think that was wonderful, just sort of building on what you were talking about. And I think it even comes back at immediately post-transplant. And this is something that I have seen and been involved in different groups and the way that they handle a new diagnosis that can be really scary. And there are, you know, a huge range of how people do life after transplant, and families and kids and that sort of thing. So, you know, I have seen people that say, you know what? I've got the second chance. I am blazing forward. And I can't, I don't want, you know, the information is so overwhelming and the risks are so overwhelming. I am just going for it. And that's a perfectly good response. This is a hard place to live. And then there's people like me who's like, give me as much information as possible so I can make the choice, the best choices that I can make. And to go as far as like, you know, started a charity and did a bunch of philanthropy work and trying to push medicine in different directions to reduce risk for our community. So there's a huge range of people in there and how they approach life, even after transplant. And then when you add the pandemic and, you know, the health literacy level amongst the community, it ranges drastically as well. The confusion and as mentioned, the misinformation and disinformation. I think that it all adds to the pot. How does our community have the opportunity to make decisions to begin with that are right for them when the information may not be accessible? And even if it is accessible, knowing how to use it is totally different as well. Like, how do I go about testing if I don't even know where to go about it? And it's the functional piece of it as well. So I think that based on, you know, just seeing and hearing and living in these spaces and with families and how they approach life post-transplant, there is that piece of it that comes up during and after what we're going through right now in the stage that we're in with the pandemic. And then also the health literacy component. And it is very overwhelming because health trajectory is not necessarily straightforward and that can throw things out of whack as well and where you move with it. New health issues that present may change this course and how you function, you know, and how well you protect yourself as well. And so all of those pieces come into play. So I think that, yes, having tools and access to information is so important, but also being having the functionality of knowing what to do and how to use those pieces of resources and supports and knowledge is just as important. And certainly see that missing for the opportunity for people to actually make the choices that are best for them. So that's something that, you know, has been missing and something that still is missing and it would be nice to have that as we move forward and venture forward in this realm so that everybody has at least the opportunity to be well-informed and know how to use the information that they're getting. Michelle. So I love all of that. Thank you for your commentary and addressing my earlier statement. So that really is what I observe in the immunocompromised community, but I'd like to actually address my experience as a immunocompromised person as well, because I had not previously mentioned that I myself am an acute promyelocytic leukemia survivor and spent much of the pandemic, the last four years immunocompromised. Thankfully, I mean, they say that I am immunocompetent now, but my two moderately severe COVID-19 infections would say otherwise. But, you know, from my perspective, I think what is really important in all this with the divisiveness, making our own decisions and supporting the people around us as well, I think it requires a real balance, right? Because to your point, Rink, like you have to do what is going to provide you the best quality of life, right? And so I apologize if any of my statements made you feel guilty. It certainly was not my intent. And, you know, I think that that is one of the things that we all really need to be cognizant of when we are in this space is that everybody does have their own experience. And it is really important for us to be respectful of that and considerate of that and empathetic of people's experiences. And especially those who are having harder experiences than we are, right? So that is something I think is so super important for us to manage both with ourselves as well as within the community. But I also think that that's where research comes in as well, because a lot of the fear that exists in the immunocompromised community is as a result of not having adequate information. They're not comfortable going out in public. They're not comfortable being in public spaces or, you know, wherever. So they just don't. And that's, I think, where CDRP comes into play and the importance of having access to that information so that people can make better decisions for themselves, ultimately, we hope, leading to better quality of life. That's perfect. Thank you all for your comments. I mean, you all touched on the patient education piece. You kicked that off. What do we need? We need that patient education piece. You all talked about information. And we've seen quite severe communication gaps since 2020. Speaking to my personal experience, you know, big communication gaps with me and my transplant center. What I would consider some basic questions when I got COVID weren't really answered or I received different information depending on who I spoke to. And that just caused more and more stress and anxiety on my end and for my wife in particular. But Michelle, I love the way you ended your last theme. And, you know, organizations like the CDRP, which were specific to donation transplant, but there's other research networks there. So as folks who are working in advocacy policy change, as, you know, we're all patients here, but as, you know, Brink and Sherry wearing your different hats, you know, where do you see, you know, an organization like CDTRP or another research network, like what's our role to play? What do you need from us to keep you informed, to help you navigate those different circumstances? And as COVID continues to evolve, what is it you need from us? To ensure you have a good quality of life, but also to inform policy change. Whoever wants to go first. You know me, I'll just keep chatting. But no, I think it's a very important role. I mean, I got involved right in a, in a very strange way. I happen to know Sandra Holdsworth and she's like, Hey, she gets, I was doing some stuff. Some research was going on at the university health network with Dr. Mucci. And, and so she was on there. We just chatted and said, Oh, did you know about this? So I, I didn't even know what I, you know, my transplant was what 12, 13 years ago. And so it was, it was, I wasn't even involved. I think one of the roles that CDTRP can continue to play and play more of, as soon as you were talking about that, it made me think of even treat COVID, maybe we can look at that process of, of engaging patients and family partners and giving it more of an educational bent, you know, that, that of course it's a lack of awareness. It's a lack of information. Maybe we need to look at a little differently from a pure, not just from a pure research perspective, but from a, from a, from an interactive perspective that, that, Hey, by the way, we're going to keep you engaged. And, you know, so this is not just a research project. I don't know why I just, as you were talking, it just sort of triggered that, that maybe CDTRP can help change the way we look at research, just like it has in terms of getting patients and family members involved in the research and actually meaningful involvement, because it's not just, Hey, we have a token patient on there and they can sit in a chair in the corner and watch what we're doing. No, you know, get involved in the initial design of the research, the actual setting up the frameworks or all the way to maybe putting some policies in place. And because there are going to be patients that have the capability of doing that, it might need some boning up on the, you know, the language used in healthcare. And, but outside of that, I think there, we're not really tapping into that. I think that's where CDTRP's role really would be extremely important. Take that next step from, from getting patients and family partners involved in this, meaningfully involved in this, and then maybe having a much more interactive way of engaging patients rather than, because all of us have probably been in a ton of these research studies from the time I have a transplant, you know, Hey, there's a new way of doing biopsies by taking bloods. Okay, sure. I'll get into that. Oh, let's look at liquids. You know, we're going to flip you back and forth and see where all the fluids can go. And I said, whatever researchers I'm, I want to help. So sure. Stick me in there. That's a very much a, you stay the patient and now you're the research guinea pig. And that's not a role that I think that, that we need to get beyond that. I think CDTRP can do that. Take the role of the patient right away from the, we're going to treat you like a guinea pig, or we're going to give you some role in the corner, but make it meaningful. And I think that would be superb. If CTRP can consciously continue to evolve the role of the patient, I think that for me, that would be the Nirvana sort of spot. So I don't know if that makes sense, but. That makes complete sense. And before I turn it over to Jai, who raised his hand, I do want to quickly comment on that. One of the very cool things I think from Treat COVID and specifically for study number two, which focuses on the mental health piece is we're piloting an integrated knowledge mobilization approach to this. So everything you've just said Rick is part of our plan for that piece. Patients, all patients have the opportunity to remain engaged throughout the research process. Whether that is getting updates, whether that's a little bit more, if you want to participate a little bit more substantially through research, whether that's participating in focus groups, whether that's reviewing our patient education, knowledge mobilization tools that are developed, participants will have the opportunity to do that. I think part of the concern yet, at least from my perspective is how do we get them to do that? How do we, you know, I agree with you when I got my transplant, especially the first year, early years, it seems like every appointment I was given a different study recruitment document. I was grateful. I was very happy. I just had my transplant. I signed everything without really reading it to be honest, because I wanted to do my piece. And let's also like, let's be honest. These documents are like so many pages long or long, you know, you, you know, they give you a synopsis and you write it. You're right. I've never been followed up. I don't know what the outputs of that research is. With the work through TREAT COVID, we are piloting that and we're hopeful that outcomes and learning curves from this can then be established in other projects as we support other researchers. But I also want to make the point that this is why we're all here at this table. This is why 1900 exists. This is why CN exists. We're a research network. We're not an advocacy network. And my, you know, given my role as PFD manager and knowledge mobilization, you know, through my knowledge mobilization role, I want our outputs to be useful. I want Jai to take it for the work they're doing and I want Michelle to use it with the work you're doing to inform policy change, to inform process change. We don't leave that at CDTRP, but this is why we're here. We need the collective ecosystem of immunocompromised patients to come together and leverage all these different resources. But I love what you said, Rick, and this is like, thank you for bringing that up. And as you were speaking, Jai raised his hand, so I'm going to pass it over to Jai for his comments. Yeah, I mean, I, I think that as the one person here who isn't a heavily immunocompromised person who hasn't had a transplant or a cancer diagnosis, you know, I don't think you can underscore how important the patient voice is. You know, certainly across all of medicine, but particularly in public health, I think, where, you know, I think public health and COVID I think falls under that broadly. It's quite fraught, right, for practitioners. You know, I think it can be a difficult time, but it certainly has been difficult for people in public health to sort of, you know, speak and advocate because it has become so politicized. And that's kind of where patient voice is so important. And, you know, CDTRP, if you could recruit 25, I don't know that much about the inner workings of CDTRP, but if you could recruit 2,500 patients, that's like massive, I think, right, if somebody who does a bit of research. And so I think without patients, we're not going to get anywhere, right, when it comes to advocating for anything. And that's sort of more the advocacy front. And certainly, I mean, I appreciate the challenges with any research project, but I think even the ambition of recruiting so many speaks to sort of your ability to be effective. And so I just want to give a shout out to, you know, the patient and the patient caregiver sort of on this call, I should say, because I think without you all, we would be nowhere, especially if we sort of head into waters where public health, you know, can't be as vocal, where government doesn't care as much. And so I think that, you know, I've worked the most with Michelle on this little call, and she's been an absolute firecracker, right? And so it's just really impressive to see every day. And so those are kind of my comments around the involvement of CDRP and also CDTRP, I should say, and patients more generally. Sharon? Yeah, and to respond a bit more to your original question about policy and how research should be utilized, I think one of the big things that from the very beginning of the pandemic is the conflicting sources of information from your transplant center to like other provinces that are doing stuff, and there has been a conflict of information that is slightly different amongst within your own province between transplant centers, pediatric versus adult, and maybe missing information that's posted, but other provinces what they're doing and how the policies are and how there's all these layers of things that affect information. But, you know, with CDTRP it is an opportunity for a vehicle of being able to spread accurate, unified information that is consistent, and a place where patients can go to say like, okay, all of these institutions are involved with CDTRP, and this is a unified message that is endorsed by our transplant center or our province or caregivers. You know, just being able to have access, as I mentioned before, to information, and you know that, you know, if I talk to an adult transplant recipient, I'm not going to get a whole lot different. And I know there is differences. In fact, COVID was not available to pediatrics in the liver transplant community. I know there's differences amongst even like adults of pediatrics, but it would be nice to be able to use the research findings that we gain from these studies and be able to disseminate that information in a way that patients are informed in a unified way that are endorsed by the institutions that are certainly involved, but also disseminating information to institutions that are not involved and can use the information to be able to educate their patients. Michelle? In 2024, we still leave ourselves muted on video calls, of course. You know, I just wanted to build on that as well by saying that that is one of the goals we're seeing as well is to become a trusted source of information and for the immunocompromised community and by using information like, you know, what you're doing with the TREAT COVID study and other sources as well. I think having a trusted source of information is really important from a decision-making standpoint. And again, going back to the mental health, just kind of alleviating some of that pressure of that ongoing, you know, decision-making and risk assessment. But not only that, the patient engagement piece, I think is critically important for those who are still suffering extensively with their mental health as a result of COVID. I found for me, I've struggled quite a lot through 2023. My mental health was atrocious through 2023 and led to me really kind of taking a step back and deciding what was going to be best for me going forward. And that ultimately ended in me leaving my full-time job and fully dedicating myself in the healthcare advocacy space because I'm simply not willing to put myself in environments that pose risks that are not my choice to be there. If I can give you an example, I'm not interested in sitting in an office for eight hours a day doing a job that I can do perfectly fine from home on my laptop. But if it is to get on a plane and take my daughter to, you know, a new country for her to learn, you know, about a new culture or to, you know, run on a beach and play with her, that is a risk that I might be willing to take. And my point is that making that decision to leave that job that was creating that additional stress and continuing to make me feel isolated and continuing to force me to constantly fight with myself over whether I'm willing to put myself in a position like that helped me feel more powerful in my decision-making. And I think that giving patients the opportunity to participate in this kind of work also gives them a little bit of power back as well. Very, very powerful comments, Michelle. I think it goes back to what's been said earlier by Rink and by Sherry. You know, we need that information to make the decisions that's best for us. And I think that's a really good approach and certainly the approach I am taking now in 2024. I think one of the concerns, and bringing it back to, you know, the early challenges and ongoing challenges that, you know, compromised communities are facing, I think one of the concerns that we saw, and especially in the early days, when the vaccines rolled out, were differences in policy. So we talk about institutions. We talk about networks. We talk about, you know, our local health systems. And those are trusted resources. Those are trusted partners. But when you look at the Canadian, you know, when you look at what's happening in Canada and different policies, different provinces have different policies. I know this is something we talked extensively about during the early days of the 19-0 meetings is, you know, somebody's eligible here, but they're not eligible here. Given what you've seen, given what you've experienced, can you talk a little bit about what that meant for you as a patient, what that meant for you as a public health physician, as a caregiver, and maybe follow up with some of what you're currently seeing. Before we officially started this recording, Michelle, you were talking about concerns with accessing testing, right? If you're a patient, how do you access testing? So I think maybe let's start there. What have you seen? Whoever wants to go first. So this is a bit of a tough one for me. I'm not sure that I'm the best person to speak to it, but I would say that as someone who is working at a national level, as well as at an international level, it's been very difficult to have conversations with folks being a resident of Ontario who has had access to wastewater data from day one, as an example. The benefit that I have over people who live in provinces who gave up that level of reporting very early on is, well, to rink the earlier statement, it kind of makes me feel guilty, right? Like I have the ability to look at wastewater numbers on a weekly basis and decide whether I am comfortable enough going to a local retail shop and whether it makes sense for me to mask in that environment or not. And not everybody has that same level of information, and it's really very challenging. And the same can be said about anything else. We just heard that the federal government is going to stop supplying rapid tests, right? So now the question will be, does anybody have access to rapid tests to be able to tell whether they have a COVID infection or not? Or the people who are still at high risk and wanting to invite family over for Easter or Thanksgiving or any other gathering who still have that recommendation in place where they are asking their family members to rapid test before they come in the house so that they can try to mitigate those exposures, they are going to lose the ability to do that. And that is going to further, that's going to force those people to have to make those decisions between whether it is worth it to spend time with people or whether it's worth it for them to isolate even more than they already are. So I think that it's really unfortunate to see the disparities across the country in terms of access to various tools and information. And I, for one, would love to see more consistency across the country. I'm wondering if you have any thoughts or comments on that. Yeah, I mean, I think from day one of the pandemic, there was always large differences, I think, in our sort of prosecution or execution of things by province. You know, I was in Alberta. I think Alberta had a different approach than, say, British Columbia, which is different than Quebec and Ontario. And, you know, that started with sort of the extent to which things were closed. You know, the school closure thing was very variable, I think, right? And, you know, that extended into, you know, vaccination in terms of who is prioritized in that first round. And that certainly was quite controversial, I think. You know, eventually the vaccines sort of sorted themselves out a little bit because they became universally accessible, but certainly with, you know, more targeted prophylactics like every shot, again, eligibility was very different. Accessibility was very different. You know, rapid tests, actually, again, were very different in terms of, you know, I remember they were largely not available and they became very available, right? But, you know, again, not in every province. And so, yes, I think consistency is always desirable. I think, unfortunately, the way our health care system is set up is, you know, people know this. It's like 10 different health care systems plus the federal one. You know, on the topic of rapid tests, yeah, I don't know what's going to happen. You know, like, you know, they tell them in the U.S. They used to, but, you know, I don't have to go on Amazon, right? And that's where I think, you know, like patient self-organizing becomes more important. You know, there was a time in which patient groups really helped find vaccines for people when they were scarce. And there will be a time when I think, you know, patient groups, you know, band together, like Michelle's Facebook group, for example, to find out how to get things like rapid tests. And, you know, it's sort of a landscape of constant change, which I think can be very stressful. Now, I do want to just, you know, maybe speak to the resilience of people as well, right? You know, I think that instead of, you know, yeah, lots of challenges, but I think people have largely gotten through things in a positive way. And people are able to find the solutions, even as there are inconsistencies. And, you know, even as, you know, of course, there's more the government can do. But I don't want to deny how resourceful people and patients have been. And I think that's really critical to focus on as well, versus just saying that, you know, we can't. You guys have been amazing, right? Like, take care of a kid with a transplant. Like, that's wild. You know, I think you're all a testament to sort of how effective, you know, people can be in the face of challenges. And so, yes, more uncertainty ahead. But you guys should be proud of sort of what you've done, navigating sort of individually and sort of professionally in the advocacy front over the past four years. Beautiful. Thanks, Jack, for those comments. We are wrapping up on our time. So I do want to ask one more question. Maybe I'll start with Michelle and, you know, direct this to you, and then we can go from there. But, you know, we've talked about advocacy, advocacy, and I really want our listeners to know, what is CIN advocating for? What is it that you're pushing for? Thanks very much for that question. I love that question. So we are – well, why don't I start by saying this. We officially launched in November, we officially launched in November of 2023, and we launched with a position paper that was endorsed by – largely by most of our group members, and since then has been endorsed by many patient organizations across Canada. And really the focus of that position paper is for calls to action as it relates to supporting, you know, compromised immunity. And, you know, vaccines are very important. Prophylaxis are very important. And I think what we saw throughout, you know, throughout the last four years is that drug access and vaccine access was challenging. I think, you know, we've had many conversations about patients' inability to gain access to things like Abuchild and so on. And so definitely looking at better and more equitable access to therapeutics for immunocompromised people. And also speaking to, you know, the inconsistencies across the country, one of the things that we feel contributes to that inconsistency is also the inconsistency around the definition of what immunocompromised means. And, you know, I would even say – and I would love to see research on this too. You know, we say that the immunocompromised community makes up three to four percent of the population, but I just can't believe that when you look at all of the different disease areas that are impacted or considered high risk, that that is only three to four percent of the population. You know, we're talking about transplants, people who are waiting for transplants. We're talking about people who have had cancer diagnosis and are immunocompromised because of their condition or because of the treatment as a result of their treatment, which could be permanent or temporary. And then we're talking about autoimmune disorders and people who are born with auto deficiencies, immune deficiencies, pardon me. Like, this is a very large population of people, and I would love to really see the definition of immunocompromised be broadened to include more high risk groups. And that is one of the other calls to action is really coming to consistency and agreement on what immunocompromised means across the country. Also, non-therapeutics is a really important focus as well. I mean, we know through research and studies that have been done to date that the layered approach is most effective against COVID-19. And I would say probably other infectious diseases as well. And so we need to look also at what are the various tools that we're using for immunocompromised people to protect themselves and for, you know, in the health care system, what the health care system is doing to protect immunocompromised people as well from a non-therapeutic perspective and just greater access to information, data, research, like you said, to help us make better informed decisions. So these are the four real main focuses for CN and what we would like to see improve in order to help immunocompromised people live with a better quality of life than they currently are. Thanks. Thanks for that, Michelle. No one can see us, of course, because this is audio, but heads nodding up the whole way while you're speaking. I will ask one more question, and I think you ended that really well with that connection to research. As I mentioned earlier, TREAT COVID is aiming to recruit 2,500 recipients, 2,500 family members and caregivers. Call it a call to action. Maybe we'll just do a quick roundtable to end things. If a prospective study participant is listening to this, what do you say to them? Maybe not specific to TREAT COVID, but just COVID-19 research in general. Why should they get involved? Why should they register? Maybe I'll pass it to Ray first. Well, I think the same reason we would get involved in any research is you're trying to make the world better for those that come after you. That is the main reason. For me, I have a particular reason. Of course, I've got two daughters that have the same genetic mutation that I do. They will need a transplant at some point. It's 50% autosomal dominant, and it is fully penetrant. They've got it, and they will get it. They will need a heart transplant at some point in their lives. Unless a magical new genetic engineering comes along, nanotechnology is sort of improved. For me, I think everybody feels, or most people feel the same way. You want to give back to the community. You're appreciative of the fact that you got a heart transplant. You got a second chance at life, and that's an amazing thing. You feel a little bit responsible to give back. I think that's the same reason here. You're trying to make life better for patients that come after you, and they're coming all the time. Just think of the impact you can have. I think that, to me, for a patient and also a family member, I think the recognition of family members. I'm thinking, again, my wife and my daughters who have the same genetic mutation, and my son who does not. That dynamic, so my entire family would be happy to participate. I'm thinking we're not dealing only with a patient. You're dealing with a patient and their patient ecosystem around them. I think just recognizing that, I think we have to communicate that. The reason you're doing this is because we're trying to give you more of an impact and give you more of a voice in the future, make sure that we're sort of breaking through with new ways for future patients. I think that's, to me, the main thing. Thank you for that, Rink. Jai? Oh, sorry. I think that when it comes to, I mean, all the things that Rink said, I mean, I think with COVID especially as a disease that, I think for a lot of other conditions, more stable. But, you know, it's not as if the nature of other illnesses have changed dramatically in the last four years. Whereas for COVID it has, both, you know, the disease itself and the treatments and how society views things. And so I think it's especially important for something that's still in such a state of flux to be involved in research. And, you know, I think that in many ways we've been teaching it because, you know, people have paid a lot of attention. That's why there's all this stuff available, right? And you kind of want this stuff to still be available on the sort of therapeutic side. But I also think it's important for all the things we said around, you know, how much society cares, right? I think, you know, there's a decent amount of COVID funding floating around still, I think. And, you know, I think that, again, without the patients it's not going to go anywhere. And so, you know, keep the eye on COVID. Keep the eye on infectious diseases in general, you know, which always sort of often fall by the wayside compared to other things like, you know, care shortages. And really to ensure that patients, you know, this type of research I think will really, you know, support patients in a rapidly evolving landscape, right? And it's so, so critical. So good luck getting a 2500. And I think if you are eligible, please sign up. Beautifully said. Rochelle? I think that this is the type of activity and, you know, the folks that immunocompromised people really want to surround themselves with right now. It's like-minded people who are working towards goals that are going to benefit them and everyone like them, right? And like I mentioned earlier, is being involved in this type of thing and having your say and being involved in influencing the direction of things, it really just will help to give people a little bit of that power back and also can help them build more of a sense of community when they're working with these folks as well. So I would say that this is something that has been critically important to me through dealing with the last four years is surrounding myself with like-minded people who are kind and empathetic and compassionate. And also working on the same goals. It's, I would call it therapeutic. I love that. Great choice of words. Last but certainly not least, Sherry. So, you know, we get the sense that COVID is not really going anywhere. And I think the important piece of it is that as much as we try to gain insight to all members of the community, we want to ensure that everyone's voice is heard. So the more people that participate in the research, we are able to then direct the funding and future funding and research in an area that may be missed unless we have a diverse representative of voice. And so I think that that is so important as we continue to move forward and we are able to get the amount of participation that we're looking at to really see who is affected and how, you know, where is the support needed and to be able to really uncover what is behind this community and how we can best support them. And so certainly a lot of the things that, you know, the resources and support that may come out of a study like this will hopefully be able to direct, improve quality of life and impact our community in a very positive way. Particularly people that may not have access to the resources that certain people may have. So I think that there is opportunity to be able to get the diversity within a community and to be able to then look at positioning ourselves and prioritizing the information, you know, that is given to us so that we can support the community. Again, beautifully said. I've been overusing that word during this call, but you are also well attended and really hit home why we're doing this work. I will add on. I wasn't planning on it, but I will add on that one of the key pieces with pre-COVID is, yes, we want to inform the current state of COVID-19, how we can support patients, families, and caregivers right now. But we're also hoping that information is going to be useful for future public health issues, future public health crisis. It's not just about COVID-19. As I mentioned earlier, you know, I had my interaction with my transplant center where the communication perhaps wasn't the best. And part of the work that we're doing is trying to understand what those communication gaps are. So life is better not only during COVID-19, but throughout the whole transplant experience. So with that, I will end. I wanted to thank Sherry, Michelle, and Jai for joining us today. Yeah. I get a bad outro, but we're going to end it there. I'll edit that. But thanks guys. In all honesty, I will press stop here for joining us and joining me today. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you.