Cardiomyopathy: Clinical Trials and Patient Support

Andrea Linder podcast episode transcript 

I’m Erin Ferranti, board president for PCNA, and I’d like to welcome you to this episode of the Heart to Heart Nurses Podcast. PCNA is the proud home of cardiovascular nurses and one of the leading figures in the fight against cardiovascular disease. We have the resources you need for your day-to-day practice or to follow your passion to new areas of learning and growth. 

Geralyn Warfield (host): (00:00) 

I’d like to welcome our audience today, where we have the great opportunity to speak with Andrea Linder. Andrea, could you introduce yourself to us, please? 

Andrea Linder (guest): (00:06)  

Hi. My name’s Andrea Linder. I’m a cardiovascular research nurse at Stanford in California. I’ve been doing research, cardiovascular research for the last six years or so, but I have a really strong background in clinical trials and research for my entire career. 

Geralyn Warfield (host): (00:26) 

Well, we’re really excited to have you here speaking with us today. And I know one of the things that you know quite a bit about and that is cardiomyopathy. And I’m hoping you could talk a little bit about cardiomyopathy and patient groups and how that interchange kind of helps strengthen patient experience. 

Andrea Linder (guest): (00:43) 

We started, because it’s a small segment of cardiomyopathy, cardiovascular patients, there was a need for a basic support group. And I wasn’t the beginning of it, but I came in a little bit later because I’ve had experience with support groups in a different expertise area. And it felt the need for the patients to be able to get together.  

We put together a combination of a support group, which is virtual, on ZOOM. Started about three years ago. We just hit our three-year mark, which was kind of exciting.  

The patients could join virtually once a month. And how we did that was that we divided it up. The first half would be like a topic of interest, like exercise and cardiomyopathy. Or dietary restrictions or needs or anything that was interesting, topics for patients. And they would give us examples too.  

So that was like the first 30 minutes. I was in charge of doing the coordinating of the topics and getting whatever was interesting for the patient population.  

And then we had the second half with the patients would go into different ‘rooms.’ And they would talk about whatever their needs were or they had questions for the person that had discussing things. So that gave them an opportunity to be with themselves. And then we had a leader in the room. It wasn’t one of us nurses, but other trained professionals that were lay professionals, actually. 

So, it actually worked out good because it was a little bit of both. It was like you got the expertise topics and then they went out and they were able to discuss among themselves. So, it’s been working out really, really well. So I’m very proud of that of that accomplishment. 

Geralyn Warfield (host): (03:01) 

It sounds like a great model to help those patients get some information, but also have that camaraderie and that support from other individuals who are facing the same kind of diagnosis, even though their trajectory of the disease might be at a different stage or might be entirely different. How great for them to be able to spend that time together. Do you happen to know if any of them have connected outside of your ZOOM calls? 

Andrea Linder (guest): (03:25) 

They probably have. I know one of them was like, I didn’t even know that because I don’t know who’s in the group. But one of the patients on the study had said that he connected up with, he was in the group and that he really enjoyed it. You know, that’s really good feedback. It just warms your heart when you get really good feedback and interesting comments from patients and those that have been involved. 

Geralyn Warfield (host): (03:58) 

Well, congratulations on the three years of success with that patient group. That sounds fantastic.  

I’d like us to segue just a little bit to talk a little bit about research with cardiomyopathy. Would you be able to address that for us? 

Andrea Linder (guest): (04:09) 

Sure. I started doing the first of its kind research with a drug, it’s now FDA approved. It’s called Camzyos® and the name is mavacamten. So mavacamten, we did several studies with it. Started in, well I started with it in 2019. 

The research got such good results with cardiomyopathy patients. It was looking at cardiomyopathy patients with a surgical option. There’s a surgical option called septal reduction therapy. So, it was like you were on this drug and then there was time points where you could opt to go to surgery. Nobody did. It actually was such positive results that that the drug was FDA approved in April 2022.  

So, we’re doing a long-term extension study for the last five years to see what the long-term effects are. Basically, what I saw, and I’m so passionate about this drug, because basically what I saw was patients that would come in, they were short of breath, exercise impacts. One patient said he couldn’t even do a hike with his son. His quality of life was like nothing.  

And being on the drug totally transformed their lives. It’s been a very exciting project to be on. 

Geralyn Warfield (host): (06:20) 

I wonder what kind of challenges you faced just as a clinical researcher working in this field. This is a population that’s relatively small when it comes to the whole range of cardiovascular diseases. Was it difficult to get the right number of patients? Did you have to do any particular outreach to reach your n that you were looking for this patient group? 

Andrea Linder (guest): (06:42) 

In this particular study, it wasn’t as difficult because it’s kind of like the first of its kind. But in other studies, there are characteristics of exclusionary inclusion, criteria is a little bit more difficult. So, we have to do more outreach, mainly within the Stanford population, but to all the cardiovascular doctors. So, it’s been more difficult in some studies than others, but it’s usually because of the criteria that they put it in for clinical trials. 

Geralyn Warfield (host): (07:17) 

Well, I appreciate you sharing the positive results that this study had from mavacamten. And it is making a difference for patients. And it really addresses the importance of clinical research and why so much time and attention is spent at the outset. And yes, it’s expensive. There’s a lot of cost-benefit analysis that goes into a drug study or a treatment of any kind, basically. But in this case, it all ended up terrific in the end and you do have this great option for patients. 

So, I know for patients sometimes that the cost of a drug can be an issue. It doesn’t matter if it’s a dollar or if it’s much greater than that. What are some strategies that we can use for drugs that maybe have a higher price tag or a price tag that seems out of reach? Who’s responsible in your setting, for example, to help patients navigate that? 

Andrea Linder (guest): (08:50) 

It’s usually on the clinic end, not on my research end. However, I’m usually aware of the company itself has a program like the first month is free or there’s a reduced price tag for like the first month.  

But the clinic nurse kind of has to handle that kind of insurance and stuff because everybody has different kinds of insurance.  

It’s worthwhile being on the drug and it’s an improvement in quality of life and it’s a great thing for a patient. 

Geralyn Warfield (host): (10:30) 

We’re going to take a quick break and we will be right back.  

Geralyn Warfield (host):  

I’d like to welcome our audience back to our conversation talking about cardiomyopathy and clinical trials. And, Andrea, could you talk a little bit about if I were a clinician, for example, and had a patient who I thought might be a great candidate for a clinical trial of any kind, how might I go about finding information for them or with them? 

Andrea Linder (guest): (10:51) 

That’s a really good point. There is a site called clinicaltrials.gov.. And so it gives every clinical trial that’s going on, wherever it is, how many they’re taking, how many enrolled, whether the study’s open or not. And it gives the different places.  

Geralyn Warfield (host): (11:29) 

We’ll make sure to put that in the show notes too, so folks have access to that.  

If you had one key takeaway for the audience today, what would that be? 

Andrea Linder (guest): (11:38) 

I’ve been in research as a nurse. My background was in biology and I did research in undergraduate. I love the cutting edge projectory because that’s where it’s at. And the funding of research is so important. I mean, we do a lot of pharmaceutical trials and so the funding’s from there, but also government too.  

I’ve seen so many positive turnarounds in diseases that you would never think that there was anything that would be out there for it, and that patients are living better lives and longer lives. And just the moving forward, it’s just very exciting to see that I’ve been part and have been having the privilege of being able to be a part of research. So, I just love it. I’m just very passionate about it, seeing positive things, you know, and it’s been a very, very exciting career for me. 

Geralyn Warfield (host): (13:02) 

Well, I’d like to thank you and your research colleagues for helping bring hope to patients and clinicians who perhaps didn’t have any before your work was done. So, thank you so very much for all you do every day. I’d like to thank our audience for joining us.  

This is Geralyn Warfield, your host, and we will see you next time. 

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