Speaking From The Heart: A Conversation with Heart Valve Voice Canada

Show Notes

On Wednesday, February 22nd, the Alliance will be joined by more than 119 partners who are all working together to help raise awareness of valve disease—what it is, who’s at risk, what the symptoms are, how it’s detected, and how it’s treated.

This year, we’re proudly expanding internationally with the help of Heart Valve Voice Canada. There are an estimated 11 million Americans with heart valve disease and more than 1 million Canadians—so this topic is of great importance to both of our organizations. Heart Valve Voice has a number of exciting events and outreach activities planned for Heart Month and Valve Disease Day, and their managing director, Ellen Ross, is here to tell us more about their work. 

Episode Transcript

Lindsay Clark: 

Hi, everyone. Welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Lindsay Clark and I’m the Senior Vice President of Health Education and Advocacy at the Alliance for Aging Research. 

February is Heart Month and on Wednesday, February 22nd, the Alliance will recognize Heart Valve Disease Awareness Day. We will be joined by more than 120 partners who are all working together to help raise awareness of valve disease. So what it is. Who’s at risk. What the symptoms are, how it’s detected, and how it’s treated. This year we’re working very closely with one of our Valve Disease Day partners, Heart Valve Voice Canada. We are excited to be expanding internationally and working with groups like Heart Valve Voice Canada. There are an estimated 11 million Americans with heart valve disease and more than 1 million Canadians and growing. So this topic is of great importance to both of our organizations. 

Heart Valve Voice Canada has a number of really exciting events and outreach activities planned for Heart Month and Valve Disease Day, and they’re managing director, Ellen Ross, is here to tell us more about their work. 

Ellen has a wide variety of experience in marketing strategy and execution, health promotion, patient engagement, and corporate partnerships. Ellen has been with Heart Valve Voice since 2021. And before that she worked with Heart and Stroke in Canada, Nestle Health Science, American Express, and other influential organizations. Ellen’s also the chair of the Global Heart Hub’s Heart Valve Disease Patient Council, and that council is represented by 16 patient organizations around the globe. And Global Heart Hub is an alliance of patient organizations working to provide a voice for those who are impacted by cardiovascular disease. Ellen also serves on the board of directors of Global Heart Hub. 

Ellen, thank you so much for your partnership on Valve Disease Day and for joining us for today’s podcast. 

Ellen Ross: 

Well, thanks so much for having me, Lindsay, and for being such a great partner on this very important day. 

Lindsay Clark: 

Oh, my goodness, it’s our pleasure. And I’m really excited about what you have planned for the day. But first, would you tell our viewers and our listeners what Heart Valve Voice Canada does throughout the year? 

Ellen Ross: 

Absolutely. So we are a relatively young organization. It started back in 2018 with a group of volunteer board members that were represented by both patients as well as healthcare providers. And like you mentioned, I started in 2021 as the managing director. 

We are a not-for-profit patient advocacy organization that really works to improve the health and quality of life of people living with valve disease in Canada. So our mission is really to educate and advocate for early detection as well as diagnosis, along with innovations in treatment, so that Canadians with valve disease get the best possible care across their entire patient journey. We have a very strong network, a advocacy network, which includes patients, multidisciplinary group of healthcare professionals being nurses, cardiac surgeons, interventional cardiologists, and general practitioners and other patient organizations such as the Global Heart Hub and clinical institutions, like the Canadian Cardiovascular Society. 

So our core objectives are really to raise awareness around valve disease because we know that awareness levels are very low. A recent survey showed that less than 3% of Canadians over the age of 60 were aware of aortic stenosis, which is one of the most common forms of valve disease. 

We also are effectively campaigning for early detection, and that’s why it’s so wonderful to partner with you on this Listen To Your Heart Campaign. We provide credible and independent advice to patients, to support them across their entire patient journey, as well as being the voice for heart valve disease patients here in Canada. 

Lindsay Clark: 

That’s all really incredible work, and I didn’t realize about the awareness rates. That’s really interesting. So we have a lot of work to do, but we have a lot of incredible plans and I think we’re making an impact. So thank you. 

And I know that last year, Heart Valve Voice Canada released a really important report called Heart Valve Disease, Working Together to Create a Better Patient Journey. Would you give us an overview of the contents of that report and the goal of it? 

Ellen Ross: 

Absolutely. Yes, we are really excited about this landmark report. It was developed under the guidance of a multidisciplinary advisory council who included people with lived experience, so the patient as well as healthcare professionals that are engaged in heart valve disease in Canada. So from primary care practitioners, cardiologists, rehab specialists, clinical nurse coordinators. But what’s really important about this report is that it’s a patient driven report, and the patient’s perspective was the common thread throughout the report. 

It will be the foundation of all of our work in the years, to come to ensure that we are getting heart valve disease patients the best possible care. What we know is that in international literature, there is an optimal patient journey that’s been well documented. So what we did is we looked at what that optimal patient journey is for people with valve disease, what’s happening in Canada and where there are gaps. 

And we came up with 16 recommendations to address those gaps. So this report really provides clear guidance and a roadmap to decision makers and professional organizations on what should we need to do to reduce the burden of valve disease in the years to come. But we also hope this report serves as an empowering tool for people living with valve disease, to encourage them to seek that optimal care for themselves and advocate for better care for others. So the good news is, while heart valve disease is common and serious, we have effective and proven treatments. And we now have a clear roadmap to usher in a new era of focused and improved patient journey. 

Lindsay Clark: 

That’s great. And can you tell people who are listening where they can find that report and where they can find Heart Valve Voice Canada? 

Ellen Ross: 

Absolutely. The report is on our website. You can go to heartvalvevoice.ca and to the patient journey tab at the top and download a copy of the report, as well as the key recommendations. 

Lindsay Clark: 

Fabulous. Well, and you mentioned this, you mentioned it in talking about Listen to Your Heart Challenge and the importance of screening. One of this focuses of Valve Disease Day this year is screening for heart valve disease, and we know that it can be as simple as a stethoscope check. 

So I know that Heart Valve Voice Canada is hosting a screening event at Queens Park and there’s other things going on. Will you tell listeners about the events and why you think that stethoscope check, that screening should be a priority? 

…a number of people in advanced stages of valve disease are asymptomatic.

Ellen Ross: 

Absolutely. So one of the key recommendations coming out of the report is that by 2025, all Canadians over the age of 60 or those with a family history of valve disease have a stethoscope check as part of their routine checkup. And that’s really important because we know one of the big issues around valve disease is under detection, and there’s a number of reasons for that. 

One is the low awareness that we already spoke about, but also we know that a number of people in advanced stages of valve disease are asymptomatic. So they don’t have the symptoms that would flag them to go to their general practitioners and get screened. So that’s why it’s really important that a routine regular stethoscope check is part of the routine checkup. And we’re really excited to be taking our patient journey report and the recommendations to our members of parliament and key decision makers here in Ontario. 

We have a patient, Rudy Cuzzetto, who is also a member of Provincial Parliament, and he’s very committed to raising awareness around valve disease and sharing his story. So we will be going to the legislature on February 22nd and taking our patient journey report, as well as providing stethoscope screening for all the members of Parliament as well as staffers, and really hoping that they will share that message with their constituents. 

Rudy is also introducing a private member’s bill on that day to proclaim February 22nd as Heart Valve Disease Day in Ontario. So we’re really excited to start raising awareness around valve disease and the importance of a stethoscope check to these key decision makers. 

Lindsay Clark: 

I love it. It’s so exciting. And I know that’s not the only thing that you have planned for Heart Month, and I know you’re working closely with the Canadian Cardiovascular Society to potentially organize other events. So will you tell everybody what else you have going on for Heart Month and for Valve Disease Day? 

Ellen Ross: 

Yeah, we’re super excited to be working and partnering with the Canadian Cardiovascular Society to help build awareness around valve disease. 

So there’s a number of cardiologists across the country that are setting up education and screening events in their local community, and I just want to make a big shout-out to thank them because they are very busy individuals and they are taking time out of their busy schedules to plan these, because they realize the importance of getting this message out. 

So we’re trying to educate the general public on Valve Disease Day and trying to get them to take the challenge, come out and get a stethoscope check, and encourage their family members to either get a stethoscope check at these events or make an appointment with their general practitioner and get screened that way. We have events set up across the country, in Edmonton, Saskatoon, Toronto, Ottawa, Montreal, and Quebec, and really excited about them. They’re in a variety of settings, whether they’re community centers, senior community centers, or shopping malls. Mall walks are very common here in Canada during the long winter months, and what happens is a lot of seniors will go to the malls early in the morning and get their physical exercise in those indoor shopping malls. So we will have those screening clinics start early in the morning to reach those seniors, as well as during the day when the general public are going. 

And we’re super excited. This year we’re working with the West Edmonton Mall, which Lindsay, I’m not sure if you’re familiar with it, but it is one of the largest malls in North America and absolutely the largest mall here in Canada. And they are promoting Valve Disease Day for the entire heart month of February. 

And on February 22nd, they will be having four cardiologists at the mall doing stethoscope screening and educating the public on Valve Disease Day. And they have over 25,000 people that come to the mall every day. So we are expecting a tremendous turnout. So very excited and happy to partner with them. 

Lindsay Clark: 

Yeah, I mean, it’s just amazing what you guys are doing. I know it will have a huge impact. And I wanted to flag for listeners that this Listen to Your Heart challenge, anyone can participate in. So if you can’t make it to a screening event, if you’re not going to be at West Edmonton Mall or if you’re not in Canada, one thing you can do is make an appointment to go get your heart listened to. 

And Ellen, you touched on this, but make an appointment. If you can go between now and the 22nd, fabulous. If you can’t get there between now and the 22nd, make sure you make that appointment and then share on social media. Share a picture on the way the doctor. Share a picture getting your heart listened to. Maybe it’s a picture of your calendar, but show the people who follow you how important it is to listen to your heart and how easy it is, frankly. And I think it will, we can really spread awareness that way. So there’s a way for everyone to participate, even though those events sound amazing. And I’d like to be at all of them. 

So now we’re going to turn to more lighthearted questions that we ask of everyone who comes on the podcast. And the first is, when you were a kid, what did you imagine that growing older would be like? 

Ellen Ross: 

Well, that’s a really good question, Lindsay. And I think when you’re younger, you don’t actually think about growing older because it just doesn’t feel like it will ever happen. But we know it does. 

But looking back, I think I was fortunate to have all four of my grandparents live into their late 80s. And for the most part, they had good health. And they were very actively involved in their community and spent a lot of great quality time with family and friends and traveled. So I guess that’s sort of what was represented to me as my mature age, what that would look like. So I hope that that does play out. 

Lindsay Clark: 

Yeah, and now, so we’re all aging. What do you enjoy most about aging and growing older now? 

…my mother always used to say, “The days are long, but the years are fast.” And as I am aging, that proves to be really true.

Ellen Ross: 

Another great question. And it’s funny because I often don’t think of myself as growing older. And it’s not ’til I’m relaying a story and I say, “That happened.” And when I reflect back, I go, “No, that wasn’t 10 years ago. That was 30 years ago.” And then I say, “I am growing older.” 

But I think it sounds cliche, but I think it’s true. I think it’s the wisdom that comes with age and experience. So I think the lived experience that we’ve had over the years plays into both professional and personal decision making, and it’s easier to make decisions with the wisdom of lived experience. But I also think, my mother always used to say, “The days are long, but the years are fast.” And as I am aging, that proves to be really true. So I really try to enjoy every moment and opportunity that comes my way because the years are fast. 

Lindsay Clark: 

Oh, for sure. They fly. And I… That’s a really important perspective. I wish we could have that wisdom when we were like 15, but we’ll take it now, right? 

Ellen Ross: 

Yes. Absolutely. 

Lindsay Clark: 

Well, that’s all for today’s podcast. Ellen, we’re so grateful for everything you’re doing to raise awareness about heart valve disease and for taking the time to come on today and share a little bit about your work. Thank you so much for joining us. 

Ellen Ross: 

Well, thanks for having me. And I look forward to all the events on February 22nd and getting that really important message out. 

Lindsay Clark: 

Oh, we do too. And everyone should go online. Go to Heart Valve Voice Canada. Go to Valve Disease Day. Check us out on social media. There’s a lot going on. There’s a lot of ways to participate. 

And to everyone listening, thank you for listening to this Growing Old. If you’re enjoying the show, you can subscribe wherever you get your podcast. Have a fabulous day and happy Heart Valve Disease Awareness Day.