S05 E07

How Covid-19 Disrupted Cancer Patient Care


Martine Elias
Executive Director
Myeloma Canada

In the seventh episode of our fifth season, our host Peter Brenders talks with Martine Elias, Executive Director of Myeloma Canada, about how the pandemic has affected cancer patients, delayed diagnoses and treatments for myeloma patients, and recommendations for improving patient access.



From the Chronicle Podcast System, this is the NPC Podcast of the National Pharmaceutical Congress for September 1, 2021. The NPC Podcast was created to discuss and consider the purpose, process and people of the pharma industry during the year of Covid. So, let's continue the healthcare conversation by answering questions sent by listeners, just like you. 


This program is presented in co-operation with Impres, Canada's next generation commercial partner. The industry is rapidly evolving and Impres is designed to help you evolve with it. Learn more about Impres tailored best in class solutions at www.impres.com


Our guest today is Martine Elias, the Executive Director at Myeloma Canada in Montreal. Martine will join your host, Peter Brenda's for a conversation of the special burden Covid-19 has placed on cancer patients. But first, here is Mitch Shannon, CEO of Chronicle companies. 


Mitch, can you believe that it's the first day of September?




Well, Liona, I know you're a baseball fan. In a normal year September 1st would signal the start of an exciting pennant drive by the Blue Jays. But not this year, so we'll turn to a less sensitive subject myeloma. 


For 15 years Myeloma Canada has supported patients living with the second most common form of blood cancer. Under the leadership of Martine Elias the group provides a great range of resources to the myeloma community. Here's Martine describing her work to Peter. 




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


In our continuing look at the purpose, process and people in pharma in Canada. This episode takes a look at pharma from the patient perspective. Specifically, we're going to take a look at the challenges cancer patients face during this pandemic. 


Today, we're going to talk with an experienced patient advocate and former industry veteran. Joining us from Montreal is Martine Elias, Executive Director of Myeloma Canada. Welcome to the NPC Podcast, Martine.




Thank you very much, Peter, for having me today. Really appreciate it.




As we get started, I was hoping you could give our audience an overview of Myeloma Canada and the perspective you'll be speaking from today.




Thank you very much, Peter. Myeloma, Canada is a patient driven organization, we're a grassroots and we've been funded 15 years ago by a patient, two patients actually, who had multiple myeloma and their vision was to bring research to patient community and education. And so 15 years later, we are the only national organization focusing on multiple myeloma, we're coast to coast and we're located in Montreal.




So let's talk a little bit about sort of the life of the cancer patient. And as I said, in my intro a little bit about life is different for cancer patients, especially in the pandemic, and I've heard it said that cancer patients have been hit harder than most during the pandemic. And so how is it so?




Cancer patients are very vulnerable. First of all, if you look at multiple myeloma is a cancer of thee system. So it affects the immunologic response to diseases of our patient community. So if they get a cold, they'll get a cold of 100 times worse than we do. And so, the pandemic has had a huge impact on the myeloma patient community, but also all cancer communities. 


First of all, diagnosis have been delayed, patients could not go and see their doctors at the beginning of the pandemic, because doctors were not seeing patients or they were asked to postpone some of their screening testing. So we're seeing a lot of patients who had delayed diagnosis because of the pandemic. So that's the first thing that has affected patients. 


The treatment also has been very much impacted for cancer patients because they no longer could go to the hospital, the treatments, especially at the beginning were delayed, because they didn't want to use resources in hospital that were diverted to the pandemic or treating Covid patients. And as we know many of cancer patients get IV treatments and those treatments are given in hospital and then, you know, it'd be great if we could have pills to treat cancer, but we're not quite there yet. So patients have had delays in getting their treatments in the hospital. 


And the third aspect two is the isolation. Patients are sticking to their homes, they don't want to go out and be sort of jeopardize or put in circumstances where they could catch Covid but also when going to their treatments are going to see their doctors, their caregivers could no longer go with them. So a lot of patients who were diagnosed early on received this terrible news alone, their caregivers or loved ones could not be with them at the doctor's office. So that's a huge problem for patients. As you can imagine.




You mentioned a little bit in the beginning too, about sort of that immunocompromised. And so how does that relate to vaccines and the effectiveness there? And what does that mean for patients?




Well, I'm going to give you sort of the layman's sort of understanding of this as obviously, I'm not a researcher or scientist. But if your immune system is compromised, you will not build the same type of immunity to a virus that if you're a healthy individual, so if you get a vaccination, it may work, you know, 80% 90% coverage for healthy people. But because cancers patient's immune system is affected, or immunocompromised, as we call it, they may not get the same kind of protection. So even after one or two doses, they may get protected at 50, or 60%. And we don't know that for sure. So there's a lot of research going on, right now in Canada to determine the impact of the vaccine on immunocompromised patients. And there's a large multi sort of center trial that's going on right now in multiple myeloma, and I'm sure other cancers are doing the same thing, to look at how cancer patients are being protected by the vaccine. 


So if you're only responding to 50, or 60%, to the vaccine, then you know, you are probably less likely to go out and be exposed to the virus. And you look at, you know, what's happening right now with the Delta variant, and the fourth wave, so I'm seeing a lot of cancer patients who are, you know, staying home and not sort of enjoying the outdoors as much as they would, especially, you know, we've seen in the summer, there's been a few things that have been open all across the country, for, you know, the general population. So, which is great, because we can enjoy life outdoors. But for cancer patients, it's really difficult. And they've been very compromised by this. And you know, you could see it in their approach to things. And you can see that there's a lot more sort of impact on psychological component of living with cancer, for sure.




So that's interesting. If you're a cancer patient, you struggled to get to your diagnosis, you struggled to get access to those treatments, you're isolated, you're a bit alone on this one, the vaccines don't work as well as everyone else. And so you're effectively not sort of seeing the light at the end of the tunnel. And so I have to wonder, it's like, when you hear about the mental health crisis that's looming, it almost seem that cancer patients, maybe overlooked on this one as a particularly hard hit group. 


So I'm wondering, too, is there any silver lining? Or is there any light in any of this sort of stuff that's going out there? And I think about it in terms of what are companies doing, what are government's doing in terms of trying to, you know, bring new treatments out there and then come into market? Is there any solace in any of this?




The solace will be when everybody that can get vaccinated does get vaccinate, and because, you know, that is the only way that we're going to be able to control this pandemic and bring the numbers down. And it's very scary. When you see the fourth waves in the prediction that are, you know, looming at the horizon. What does that mean? That's even a much bigger burden for cancer patients, you know, they're probably in the state of where the general population was a year ago, in terms of, you know, protection. So the booster or the third vaccine dose is going to help for sure. 


And we hope here that in Canada NACI, the National Advisory Commitee on Immunization, will come out with a recommendation about the booster dose will offer solace to some patients because you know, if they're protected, at a lesser degree, the third dose will boost their protection to maybe normal status or normal states, we don't know that for sure. But you know, the science and the logic behind it would point to that for sure. So that's going to be important. 


That's in the short term that's between now and you know, the beginning of the year. So of 2022. After that, I mean, obviously, we'll have to come up with the real boosters, because right now, a third dose is not in my mind a booster, the booster will look at new variants and incorporate new targets. And hopefully the research is going on right now to address this.




You're listening to Martine Elias, Executive Director of myeloma Canada on the NPC Podcast.


What about just going after the cancer itself in terms of trying to deal with treatments they're like I keep seeing in the news, lots of companies coming out with new treatments. Is that also a place of hope?




It is, it is definitely a place of hope because the more treatments there are out there, the better it is for cancer patient, but it's also brings a dark cloud for patients because it questions their ability to access all these treatments. You look at you know, multiple myeloma for example, there are five or six treatments that have been launched in the last six years, there's new treatments on the horizon immuno, oncology, CAR T's, the bispecific antigens, which are very promising, but the issue is, how are they going to be used in the patient community? What's the sequencing that they will be looked at, from the payers perspective, from the cancer agency's perspective? Because right now, we're seeing restrictions in terms of numbers of treatments that patients can receive. And you could receive one treatment but not the other. So this is problematic because patients need options, but they also need to know that their treatment sequence is being designed or used in a way that's going to benefit them, benefit their cancer. And this is true for other cancers as well. 


So the question that governments are asking is like, how can they use these treatments? And there's no research that says treatment A should follow treatments and B and C? Or is it A, D, E? We don't know. And that's a big problem for cancer patients. And by the time you have all this information, it may be too late for patient. 


So you see the need for real world evidence increasing significantly, because I think in my mind that that is going to address many of those questions for patients is how do you sequence these different therapies in the best way possible that's going to attack or keep the cancer at bay for patients? So you are delving into personalized medicine, the concepts are there, but the application is lagging behind. And that's what patients are worried about today.




So what I'm hearing those doctors that might know about treatments or patients that may know about treatments, they simply just don't get those doctors just don't automatically prescribe certain drugs, there seems to be a process or something on top of that. I mean, this is something like I recall seeing something related to this that I think Lymphoma Canada did a white paper on improving access. And now that you guys were part of that, along with a host of other cancer groups. So can you give us a little more color in terms of what does this paper talk about in terms of issues or even recommendations?




The paper really talks about the evidence that is collected in clinical trials to address cancers. And, you know, we see more and more drugs that are approved based on phase II data, because the outcomes are so good that you really have to, you know, make a submission to the health authorities for getting the drugs approved by Health Canada, for example, or in the US by the FDA. And quite often this evidence is not fit to pass the CADTH or the health technology approval threshold. And we're seeing drugs that are getting rejected for funding recommendation by CADTH, because the data is not as robust or strong as they would like it to see, although the evidence the efficacy has been proven in phase II clinical trials. 


So we're seeing drugs that are getting approved, but they can't get recommendations for funding. And if you don't get recommendations for funding, then the provinces will not uptake the drug or look at it from the PCPA, the pan Canadian pharmaceutical Alliance, perspective to make recommendations to provinces and that's a big issue, because there are a number of you know, new cancer drugs thinking in lung cancer, for example, lymphoma, leukemia, multiple myeloma, breast cancers that are not getting to patient because the evidence, although good enough to get approval from Health Canada may not make it through the HTA review process.


So doesn't that create a catch 22 situation, though? Like I mean, how do you get through this, when you got one hand, you got data that's good enough to show us evidence that it addresses the cancer, it helps the patient. But the critical HTA body, that health technology assessment body wants more data, but you can't get more data unless it gets used, and you can't use it unless you get the HTA. So it's like they're stuck, it's like Canadian patients are going to be in a perpetual cycle of lack of access. Is that sustainable? 


No. And it's very grim, if you paint it that way. But obviously, that's why patient organizations are pushing governments and pushing if that's why we came up with this white paper and the white paper that you're referring to is a follow up to a previous white paper on the same topic that we did about a couple years ago. And we decided to go back and look at the evidence and see if things had changed since we first published the paper. And in some cases, there was some improvement, but the greater scheme of things, there wasn't really any change or any movement. I think there was willingness to review drugs in a different light. 


But we always get caught on the evidence question is, the evidence, does it, you know, meet the bar that has been set. So well, if that's the case, then let's change the bar or look at a graduated bar. So look at you know, achieving a little bit more and opening access. And if you achieve that level that you've set, then you can change the bar and move the bar. So there has to be a dialogue between industry, governments, and also patients because I mean, at the end of the day, patients are the ones who are taking the risks. And they're the ones who are living with the benefits or the side effects of a new treatment. And I think they should be involved as well. And we know in cancer, I mean, if a drug is not working, you're not going to want to continue to take that drug, I mean, you're going to want another treatment that's going to, you know, increase your overall quality of life, and your length of life. Because those are two things that patients want the most, they want longer lives, but they want also better quality of life. And that trade off between the two is not necessarily what governments or even industry thinks is the right thing. 


So I think that's why patients need to be involved and the need for you know, real world evidence and trials designed to address what happens in the real world are really important. And it would be common sense to look at this information and make decisions about you know, what drugs should be and how they should be reimbursed. And that would help patients in terms of determining, you know, for them, what's the right sequence of a drug, so you almost need a fluid system, where you would have access to everything. But we'd have to look at the individual patients to determine, you know, what's the best outcome for them. 


Now, that's probably utopia. Because you know, governments look at budget, they look at societal costs, they don't look at individual costs. But you know, somewhere between those lines, we should be able to come up with a solution. And I think once you look at evidence based reimbursement schemes, we probably will be a lot closer to what reality should look like. But there has to be a willingness to go down that route.




You're listening to the NPC Podcast, I'm Peter benders your host. 


So I'm listening to that. I can't help feel that there's a bit of it's a disturbing I think, as you suggested out there when you sort of you think about this one in terms of this evidence, but there is evidence there's so people understand there's evidence to show that this product works, you know, Health Canada, looks at evidence looks at a robust clinical trials and shows that there is a positive risk benefit outcome to get there. So it's not a question of that evidence. 


What I'm hearing, though, is a question of evidence as defined by a capricious bar that's set by some group that no one really understands, which gets into that catch 22. And I can't help think that most patients and perhaps even the public themselves, really don't appreciate this, because what I'm looking at now I'm hearing about like, it's only a matter of having, you know, a national formulary. If we had a big pharmacare National formulary, the problem is solved. But what I hear from you is, it's not the formulary, it's a question of would the payer even pay for this product? And how does it get on a formulary? So what can we collectively industry, patient's care provider? What can we do about this?




You bring up an interesting point. So the National Pharmacare and, you know, national formulary? I don't think that's the answer, to be honest, because that's a bar, I mean, that you can have very high bar, and the higher the bar in terms of bringing new drugs on, that formulary could sound good for patients. But it's not always about having all the drugs on formula. It's about having the evidence in terms of like, what's the sequence of drugs should they take, especially in cancer, because you start with approved therapies, and you move on to the different therapies down the road. 


So what I'm saying here is that the bar of a national formulary, the last thing you want is to be set very low, because then it's not going to address the fundamentals behind the National Pharmacare. And what I'm seeing right now, with the strategy that's being discussed, or we're starting to develop, is developing a list of drugs that will be approved. And that's not the issue. The fundamental should be okay: what do we want to provide to Canadians in terms of access to therapy that is going to give them a better quality of life and a longer quality of life? 


So the importance of having the patient voices at the table is really, really critical in this. And what we're seeing right now is different interests being addressed by, we want a formulary, tick that box and it's done, and I think we need to elevate that discussion to the fundamental of what does the Canadian system want to provide to Canadians and I agree with you 100%, that the evidence is generated from the research on clinical trials or for new compounds for new drugs, is excellent research. And it's important for Canadians to have access to that research to clinical trial. And that's a whole other issue, access to clinical trial in Canada, what could happen there, but the importance is taking that evidence and then bringing it to the patient in the communities and looking at does it work? Does it make sense to give access to that patient for this drug? If it does you continue to give access? If it doesn't, then the patient needs to switch drugs. And what are the drugs are available for that patient to achieve its goal of having, you know, longer life and better quality of life, that may not be really addressed in the current system? Or how drugs are being sort of put on formulary?




So if I hear you then because, to a point, if you have to go to another drug. And if it's not on the formulary, it's not there. So it's almost like it's not a question of if something should be on formulary. The answer is yes, it should. But the question is, how should it be accessed on there? And what is the appropriate sort of point of care for something like that? And I my presumption is here is isn't that a conversation the best left between the doc and their patient?




Yeah, yeah, absolutely right. And the doctors, you know, they need the tools to be able to treat their patients as best they could. And they follow the science and they understand the science. And the last thing they want to do is give a treatment to a patient that's not going to have the maximum potential, you know, effectiveness or outcome. And doctors treat patients and they don't understand all this happens in the background. And they get very frustrated about this whole HTA process and reviews. 


For a doctor not to be able to give a treatment, thinking of you know, one particular case where a doctor wanted to give a CAR-T to a myeloma patient, but the prerequisite was for the patient to have a CD38. But the patient couldn't get the CD38 because it wasn't funded. And so you can imagine how frustrated it is for that physician for that patient who know that a CAR-T therapy would be the best next treatment, but they can't get it because it couldn't have access to the drug that was required beforehand. 


There's got to be some flexibility in the system to give physicians more leeway to be able to do what's right for the patient and not have to deal with all this frustration, this bureaucracy. We know oncologists are stretched, they work really hard. And there's not enough oncologists to treat all the cancer patients in Canada. You know, we have a patient in northern BC, who's a myeloma patient and she's been treated by breast cancer specialist. Does that makes sense? No. 


So doctors needs to practice medicine and they don't have to be pulled down by all this bureaucracy of how to get access to drugs and filling out forms and, you know, showing reasons for why patients should get a drug and spend all this time. It's not a good use of resources.




All that it's clear that we have a lot of work to do to turn this system around. We have been speaking with Martina Elias, Executive Director of Myeloma Canada on the NPC Podcast. 


Thank you for listening. 




Thanks to Martine and Peter. If you'd like to learn more about this organization, just go to myeloma.ca. 


So what did you think about today's conversation? Let us know via a direct message on Twitter, send it to @2021NPC or peck out an old timey email to health@chronicle.org. Or you can even pick up the phone and leave a message on our comment line at 647-873-6995. 


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This is Mitch Shannon of Chronicle companies. Today's Podcast Producer is Jeremy Visser. The musical theme is performed in a hurry by the NPC podcast orchestra under the direction of Maestro Aegon Millbrook. Enjoy your Labour day long weekend and stay safe. 


We'll talk again next Wednesday.