S03 E01

Health Charities and the Impact of Covid-19


Dr. Karen Lee

President & CEO

Parkinson Canada

In the first episode of our third season, Peter Brenders, CEO of the New Brunswick Health Research Foundation, talks with Dr. Karen Lee, President and CEO of Parkinson Canada, about the impact of Covid-19 on the health charitable sector and research funding.



Thank you for downloading the NPC Podcast from the National Pharmaceutical Congress for January 27 2021. This program is all about discussing and considering the purpose, process and people of the pharma industry during the Age of COVID. The health care conversation continues as we answer questions sent by listeners like you. 


This program is presented in cooperation with Impres, Impres best in class commercial solutions offer top line and bottom line growth with maximum sales force, flexibility, speed and efficiency. Learn more about their next generation commercial model at www.impres.com


On today's podcast, our guest is Dr. Karen Lee, President and CEO of Parkinson Canada in Toronto. Eager to show of his new Blue Yeti microphone is your host for today's podcast. Peter Brenders, CEO of the New Brunswick Health Research Foundation. 


But first, here's Mitch Shannon of Chronicle Companies,




Thanks Liona. 


And welcome listeners to our winter series of podcasts from the National Pharmaceutical Congress. We've got some great guests and vital topics lined up for the coming weeks. But first, I'd like to let you know about our NPC Winter Webinar, which takes place two weeks from today, on February 10, 2021. I'll have more information for you about this event later in this podcast. 


Meanwhile, here we all are again, picking up where we left off last month, only in some respects things have gotten worse. If you're listening in Quebec, Ontario and many other locations in lockdown, you're going to be sheltering in place during the coming weeks. No one is going to enjoy these circumstances, but some will have it worse than others. 


Suppose you are living with Parkinson's disease for example, social isolation is only going to add to your burden. This puts added stress on patient support groups such as Parkinson Canada, and that's happening in a time when patient support groups are finding their usual funding and philanthropic sources being placed under strain. That's what you describe as a potential vicious circle. This week's guest, Dr. Karen Lee, is President and CEO of Parkinson Canada, the leading support agency for patients living with PD. 


Here she is in conversation with Peter.




Welcome to the NPC Podcast. I'm Peter Brenders, your host. 


In our continuing look at the purpose process and people in the pharma ecosystem. This episode explores the world of health charities and their important contribution to research and patient care. Joining me today is Karen Lee, President and CEO of Parkinson Canada. Welcome, Karen.




Thank you, Peter.




Karen, I was hoping you could take a moment to explain to our listeners a little bit about the work of Parkinson Canada.




I'm happy to. So, Parkinson Canada is a not-for-profit health charity. And our mission really is to support people living with Parkinson's in terms of programs and services across the country, as well as funding vital research as we still don't have a cure for Parkinson's.




So you're not new to the health charity space. So I've seen your work for many years helping patients with MS, for example, through the research support you did at the MS Society. And now you're seeing firsthand what the impact of Covid is doing to help charities. Maybe you can tell us a little bit about that.




Yes. So as you said, I'm not new to the health charitable world. I've been quite involved with health charities and seeing the impact we provide. And you know, for people living with various diseases, help charities are vital in the sense of not only funding research, but providing vital services that potentially the healthcare system isn't able to do. 


So what many people may not know is that health charities do provide a lot of support. And we mean support, it could be from a social worker, various other health charities even have physiotherapist to respite and that's taking some pressures off the healthcare system. As we know, with Covid, we're hearing a lot about the hospital systems being at max capacity, but we can't forget that there are people who live with chronic diseases that also need access. So that's really where health charities really come into play and play a support role in that area.




So what has Covid done to your business then? So donations coming in? You're able to support like you've always been able to support? Is this the best time ever for charities?




It's been, let's be completely honest, it's been a difficult time for health charities, that aren't related to developing PPE or providing PPE or have frontline workers. It's tough. We have seen, we were predicting at the top of Covid, so when it first started, a potential 50% decrease in revenue, which is huge. I know from all my colleagues in the health charitable sector, a majority of us started planning for that. 


And what it is, is that donations are being diverted to other places, people are losing their jobs, aren't able to give. And another really important piece, as many of you may know, we rely heavily on events that are coming together building awareness. So there's the walks, the bikes, and those weren't able to happen. So therefore, money wasn't coming through that way. And so it's really impacted health charities in terms of, one: can we even provide the support we used to? Two: we have to pivot and what does that mean to pivot? And thirdly, can we still fund research, which is, as we know, costly. So choices had to be made.




So tell us about those choices. I mean, those are three big things. Can you continue the support? Do you have to pivot? And critically: research. So what happened in those three areas?




So I can tell you personally from Parkinson Canada's point of view, we needed to prepare, we needed to look at, first and foremost, what do people living with Parkinson's need? 


And so I was new to the role at the start of Covid, April 1, and one of the first things I did was I went into the community virtually, and ask people what was it that worked for them, What didn't work and what did they need. And we heard loud and clear the importance of the support groups that Parkinson Canada does provide. However, we knew we couldn't bring them in person. So for us, we have an aging population that lives with Parkinson's and who aren't used to what we are all using now, which is the technology of virtual meetings. And so we really had to figure out how to pivot that, allow them to still come together in a supportive manner in a virtual way. 


At the same time, it really pushed us as an organization to really think about what are the new support services we need to bring, and also what new programming we can do for people who are at home. Right? We know that exercise and wellness is important for people to live well with Parkinson's. So how can we as an organization continue or begin to do that in a different way? And so, for us, as an organization, we are looking at all those facets, delighted to say we're going to be developing a mobile app that's going to help people live better with Parkinson's or live well, shall I say, with Parkinson's, and we'll get personal coaching. And that's something that's new for us as an organization, and I'm excited about and that's the one we were pivoting. 


But at the same time, we've had to make the decision of halting some of the research. And that's the piece that is ongoing, something you need to continue to go, you know, continue to fund because you can't stop research, right? As you understand in the pharmaceutical world. It's something that takes years and years. And so we've had to make some difficult decisions of, not for this year, for 2021, we won't be holding one of our competition streams, which is to fund pilot grants and pilot grants are important because it's a space not many people get into. It's the riskier space, right, of some ideas in Parkinson's, we've had to make that difficult decision of not funding this year. But we've also made the decision to continue to fund trainees, trainees are important. So people doing their graduate work, because they're the future for Parkinson's research. So that's the decision we made. But those are difficult decisions. 


I don't think people realize that health charities annually all together, collectively found $155 million into Canadian research. And that's huge. And last year alone at the start of Covid, they already saw a drop of at least 40 million, and it's probably more than that over the course of 2020. And we will see what 2021 brings. But I have heard many of my fellow colleagues in the health charitable sector, we've had to cancel competitions this year.




You're listening to the NPC podcast, I'm Peter Brenders, your host. 


Wow, that's an amazing impact. When you think about it 150 million, that's a lot of money going into research. And if you're talking about exactly as you're saying, that's that early pilot work where the potential future solutions can come from, and being cut by a third to a half and maybe longer. 


So I'm trying to think about the downstream effects like how is this gonna ripple through the system in the coming year? So even if you go back up to your level, it's like, we're never going to recover this time. So what's the answer?




I don't know if I have an answer, let's be honest. But what I can say is that we need to keep pushing, we need to figure out ways to work together collaboratively. And, unfortunately, Parkinson's, we don't even have disease modifying therapies for a progressive disease. We are on the brink though, but because of Covid, I don't know, has that delayed, you know, that potential of having something to come to market sooner rather than later? And at the same time, we don't have good biomarkers. I know there's many people working on that as well. And you know, with Covid it's not just Parkinson Canada who's in the ecosystem and funding Parkinson research. You've also got to think about the federal government. Michael J. Fox foundation is someone that also funds into Canada. 


So, you know, what's that impact downstream is, have we delayed the accelerated pace where discoveries were happening? And all of a sudden, you've got Covid, funds are being diverted, attentions have shifted, and donor dollars are down. So for myself, I don't know if I have an answer. But I do know where I'm looking forward to is, yes, we've had to halt to a competition this year. But at the same time, it's giving us as an organization opportunity to really take a little bit of time to think about have we had the right type of funding going into the right area? So prioritizing research areas that could potentially be potential promise. 


Number two, looking at collaborations, so whether it's in partnering with pharmaceutical companies, we know we can't do this alone with other health charities in the space. And I think that's really what we're taking stock now is taking the next couple months to really think about and working with our community. And when I say working with our community, it's not just the research and clinical community and the pharmaceutical companies, but also the patient community, we need to hear from them as well. So we're really taking this time and this opportunity to really re-strategize our research portfolio.




So I guess that's the silver lining, if there is one in the Covid space is that it's forced a hard rethink, making you look at stuff that might have been too sacred to touch in the past. But now you really have, well permission, or it's a necessity, I guess, is what I'm hearing. You have to take a look at it. 


But you mentioned the federal government. So that raises a question as well. So, you know, we've seen a lot of enthusiasm from governments to make a concerted effort to find and support research for Covid. Whether they be vaccines or therapies, it's like, "oh, great, that's exciting." So the government's stepping up to help in one disease area. So how do you see that enthusiasm extending to other disease areas?




Well, here's the thing is that one: I can tell you help charities, we are asking the federal government for relief packages for health charities. About approximately $130 million over two years, because, as I said at the beginning of this podcast, it's not just research that we're funding, it's also vital care, that takes pressures off the health care system. 


That being said, if we look at all the energies and efforts and funds that have gone into Covid, one very specific issue at hand, and we are seeing results, right? The vaccine is now rolling out. That's a proof of concept, right? If anything that's a brilliant proof of concept is that if there's enough energy, enough funding, we can solve problems. 


So I think what's going to be really important moving forward, is working with the federal government to really demonstrate that you can't pull back on health research. Funding is critical when it comes to not only various diseases, but the Canadian Institute of Health Research, and to really think about the ecosystem of what's important. So the downstream effects are going to be better for the Canadian, the Canadian population. So that's really the big thing moving forward.




Let me pick up on a point you talked about sort of that health ecosystem for health research, or just the ecosystem itself and to take a look at what's important. In your mind is pharma important to that ecosystem?




Absolutely. I think that is absolutely important to that. Sigh of relief on your part, right?




Phew. Listeners, do you hear it? We're important!




Well, and here's the thing, let's be honest, there's sometimes this negative connotation about pharma, right? And especially health charitable sectors in pharma. There was an interesting relationship many, many years ago, but I'm a big believer, and I've seen it work, is that we're all part of the same ecosystem, we want the same thing at the end of the day. And so for me, it's so critical that whenever we have discussions, we will have pharma at the table with the government, with the health charities, with the patients and academic centers. When you have all those different lenses and views at the table. I think solutions come faster. And I've seen it work in the MS field. And this is something I also want to bring to the Parkinson field as well. It's much needed. And more importantly, we can't do this alone.




You're listening to the NPC Podcast, our guest today, Karen Lee, President and CEO of Parkinson Canada. 


So let's talk a little bit more about sort of the ecosystem. And so I saw the recent mandate letter that the Prime Minister gave to the health minister and it talked about, on there in particular, sort of the importance of setting up a Canada drug agency and getting national pharmacare off the ground. How are these gonna affect the health charities do you think?




So one of the big things that we are really looking at is with the various drug companies that are out there, and the various drugs that are available for various diseases, we want to make sure that the end of the day, the patients get the right drug for them. And that is critical. And that is why we fund research because it's not going to be a one fit. 


You know, one drug is going to work for everybody. We've seen that in various diseases that you need. Everyone's so different. We talk about personalization, we talk about personal, that's actually the new era of personalized medicines, and how are we going to do that, right? And that's where the health charities that's it, that's what we're advocating for and where we see the importance is that, we want to make sure the patients at the end of the day, get the right drugs that are suited for them. 


And that's where how charities are going to work together to make sure that, that that happens. And that's the critical piece we're working forward on, it's gonna have a huge impact in the sense for our patient community. And that's why we need to really advocate on behalf of them.




It's a great story and great message to remind everyone that it is about the patient and to bring the right therapy, and then there's no one size fits all. But I can't help think about the, you know, the hot topic, which seems to be going around in terms of bringing therapies into Canada, seem to be running up against a screen of things like the Patented Medicine Prices Review Board and new guidelines that are perpetually delayed and crazy, creating some uncertainty. I'm wondering if that environment is affecting health charities as well. Is it affecting your partnerships with pharma at all? Do you see any impact?




So here's the pieces I think a lot of pharmas are kind of just, from my understanding is, it's not necessarily impacting how we work with them, but potentially down the road is, will they be able to invest or partner with us on large scale projects, because of this, you know, the new regulations? Is there going to be that investment into Canada? 


The piece that I think will be also critical is, it's not only about getting the drug here, it's also about, we have some world leading clinicians and academic centers that can run clinical trials, and will the pharmaceutical or the industry want to make that play in Canada, that's the other piece and the other side of the spectrum we need to look at. Because that means early access, and for patients to actually be involved in research. So those are some of the things that I know as health charities we're really looking at and trying to advocate and to get that voice heard at the table.




So let's take those words wisdom into advice for the pharma industry. So Karen, what should the pharma industry focus on? What do they need to do to help build that ecosystem and working with health charities?




Here's the thing is that, I know from my lens and where I sit, and my openness is, we want to work with everybody. I want to hear, because at the end of the day, we all have the same goals. We're not competitors, I would say, tap the shoulder of the disease state you're working with that charity, I know that they probably want to hear from you. And that collectively, we can be a stronger voice together. 


And I think that's the piece that for many, many years, we've been siloed, we went off and did our own things, you know, kept an eye on one another. But I think as these new regulations come to play, I think we all are feeling that the patient voice and the patients are not being heard in the right way. And I think collectively together, we can be stronger.




What a great message to wrap up on. It's what we've been hearing in the Covid space is we're all in this together, but I think your messaging in this in particular, is collectively we can be a stronger voice together. 


You've been listening to the health charity expert and President and CEO of Parkinson Canada, Karen Lee on the NPC podcast. 


Thank you for listening.




Thanks to Karen and Peter for that lively start to our 2021 series. 


If you're interested in learning more about Parkinson Canada or supporting their work, visit parkinson.ca. 


All past episodes of the NPC Podcast are on Google Podcasts, Apple iTunes, YouTube, Stitcher and other sites. But why not subscribe at pharmacongress.info and we'll send you each episode. 


There's a great program coming up for the National Pharmaceutical Congress Winter Webinar. Paul Petrelli of Jazz Pharmaceuticals, Carol Stiff of Santen Canada, and Jim Shea of CCPE will be available live on Wednesday, February 10, at 11am Eastern Time to take your questions. And you know the moderator he's our own Peter Brenders. So sign up today at pharmacongress.info and we'll see you on February 10th. It's free. 


And you can send your questions to us through Twitter and follow us @2021NPC. That's our Twitter handle: @2021NPC or leave a message on our new comment line anytime 24-7 at 647-873-6995. That's 647-873-6995. 


This winter series of the NPC Podcast was presented in cooperation with Impres, Canada's next generation commercial partner. Learn more at www.impres.com. I Toronto, I'm Mitch Shannon of Chronicle Companies. Your announcer is Liona Droid. Jeremy Visser is the producer. The musical theme is performed under the direction of Maestro Yahudi Millbrook. Have a good week and stay safe. We'll see you again next Wednesday.