Celebrating 10 Years of Valve Disease Awareness with Lindsay Clarke

Show Notes

Heart Valve Disease Awareness Day (HVDAD) takes place each February 22 during American Heart Month and was launched to raise awareness of valve disease risks and symptoms, improving detection and treatment. Before the campaign began, symptoms were often dismissed as “normal aging,” when we now know they’re not.

Today, HVDAD unites more than 135 partners including nonprofits, advocacy groups, hospitals, and heart centers to amplify awareness nationwide. We’re joined by Lindsay Clarke, COO and Senior Vice President of Health Education at the Alliance, who founded HVDAD and helped grow it into the movement it is today.

Episode Transcript

Katrin Werner-Perez:

Hi, and welcome to This Is Growing Old, the podcast all about the common human experience of aging. I’m Katrin Werner-Perez, director of health programs at the Alliance for Aging Research, and I’ll be your host today. Heart Valve Disease Awareness Day takes place every February 22nd during American Heart Month, and was started by the Alliance for Aging Research to increase recognition of the disease risks and symptoms to therefore improve detection and treatment. Prior to starting the campaign, Americans knew little to nothing about heart valve disease, so symptoms of the disease were often dismissed as normal signs of aging, which we know they’re not. On Heart Valve Disease Awareness Day, we’re joined by over 135 partners comprised of nonprofits, advocacy organizations, hospitals, heart centers, and more, in spreading the word about valve disease and amplifying each other’s messages. Today, I’m sitting down with Lindsay Clarke, COO and Senior Vice President of Health Education at the Alliance, who started Heart Valve Disease Awareness Day and grew it from its infancy to what it is today.

Lindsay, I’m so excited to be sitting down to talk about Heart Valve Disease Awareness Day as we get closer to it on February 22nd. So tell us, why did the Alliance start Valve Disease Day?

at least 15.3 million Americans are affected by valve disease.

Lindsay Clarke:

Well, we had previously been producing educational resources on valve disease, so teaching folks what valve disease was, but it was becoming increasingly clear that way too many people had no idea what valve disease was. And so, we wanted to confirm that. We conducted a public opinion survey to find out more about awareness or the lack thereof. And as you alluded to, we found that three out of four people knew little to nothing about valve disease. And this is despite the fact that 15.3, at least 15.3 million Americans are affected by valve disease. We know that means that one in five people age 65 and older have valve disease, and it’s killing 25,000 people each year. So obviously, there’s a big reason to raise awareness. We also know that valve disease, if it’s left untreated, it’s a progressive disease, so it can progress into heart valve failure, which can be fatal.

So all of this makes awareness and recognition particularly critical. So knowing all of these facts, we decided the best thing that we could do at the Alliance was start an awareness day and bring together a lot of our partners to help change that.

Katrin Werner-Perez:

That is incredible and very important. So how did you kick this all off in 2017?

Lindsay Clarke:

Well, we created a website so people could come to us to learn more. We created a whole suite of graphics and resources for our partners so that they could join in in spreading awareness. And then we officially announced the day at an event on Capitol Hill. We were joined by Dr. Gary Gibbons, the director of the National Heart, Lung, and Blood Institute at NIH. We were joined by a patient advocate and his wife who shared their experiences living with the disease. And then many of our, at the time, 17 initial partners joined us. And it was really clear from the enthusiasm that we saw that day that there was tremendous need for this effort.

Katrin Werner-Perez:

Wow. What a way to kick it off. Well, we’ve done so many things over the years, but what are some of your favorite highlights from the past 10 years?

Lindsay Clarke:

First, as the campaign every year, the Alliance convenes a Heart Valve Disease Awareness Day flagship event. So these are campaign-led events, and we started with that exciting launch on Capitol Hill that we just spoke about. The next year, we had an event for staff and patients at Inova Hospital in Virginia. The next year, we had an event with the Surgeon General, Dr. Jerome Adams, that was for clinicians at MedStar in Washington, DC. We had a screening and informational fair for residents at the Greater Harlem Chamber of Commerce. Then we got into the COVID years, so we shifted and we had a virtual five-year celebration, and the next year we had a virtual educational conference, all big successes. And then, we were able to return in person with a community screening event that was at an independent living community in DC that we did in partnership with the National Caucus and Center on Black Aging.

And then last year, we partnered with Rock From the Heart in Minnesota for their educational symposium and their rock concert, which featured the Spin Doctors. And Katrin and I know both really enjoyed being at that event and being there with Dr. John White, who’s on our board and at the time was the chief medical officer of WebMD. So those are our flagship events, and that doesn’t even touch all of the things that we do for other outreach. And we do this with our 135 partners. So we were able to one year ring the closing bell on the New York Stock Exchange, which is incredible. To see our logo all over the floor on the big screens was a really big treat. We had a billboard in Times Square. We’ve had congressional resolutions that officially recognize the day. We had Congressman Andy Barr from Kentucky, who’s been an incredible champion of valve disease, went on Good Morning America and had his heart screened live at a hospital in his district.

We’ve authored op-eds, hundreds of letters to the editors, press releases. We’ve gone on radio media tours. Katrin and I have done a lot of juggling of back-to-back interviews. We’ve spoken on podcasts. We’ve lit up monuments like Niagara Falls. We’ve done radio interviews, placed ads in Reader’s Digest. We’ve distributed tons of TV PSAs, hosted Twitter chats and social media challenges, and so much more. And then our partners, we’ve got 135 now. They’ve hosted all sorts of things. They not only participate with us in those things, but they’ve done heart walks, support sessions, screening events, rock concerts, expert panels, webinars, TV interviews, awareness interviews, metro handouts, center launches, senior center events, lunch and learns, educational booths, symposia. They’ve done health fairs, screening events, and tons more. And that’s the tip of the iceberg, but I’ll cut it off now.

Katrin Werner-Perez:

Well, no, the impact truly has been incredible. And I love how varied the activities are. I heard a few of my favorites in there as well, including meeting the Spin Doctors. Did you think when you started this that it would still be going strong 10 years later?

Lindsay Clarke:

No, no idea. And the thing that’s fun is every year, as you know, we sit down after the day and we’re just combing through the internet looking to see, did we miss anything that was happening? We want to make sure we capture that in our impact and that we thank partners. And we’re scrolling through social media and we’re seeing pictures of events we didn’t even know happened. And so, two years in, that started to happen. Who’s this partner? They’re doing something for Velvet Disease Day. And at first I was a little taken aback and then I realized, you know what, the fact that they’re participating without us knowing is a sign of our success. So that was really the day that I realized we had become a movement that existed outside of our efforts. And that movement has continued to grow to date from what we’ve been able to capture, so this is probably very underestimated, we’ve produced as a campaign with our partners about 1.5 billion impressions and 29 million activations.

So those activations, as you know, Katrin, but for our listeners, are things like people actually watching most of a video, going to an event, returning to a website for content. We know they are looking for information and staying. So to be able to have 29 million activations, I think really shows what this movement is able to do.

Katrin Werner-Perez:

Absolutely. So what do you have planned for this year’s celebration?

Lindsay Clarke:

Well, lots of exciting things, but I’m actually going to kick it back to you because Katrin is now spearheading Valve Disease Day and coordinating our activities. So Katrin, what do we have planned for this year?

Katrin Werner-Perez:

Thank you. Well, this year marks a very exciting year. We are commemorating the 10th observance of Heart Valve Disease Awareness Day. So to celebrate this big milestone, the Alliance is hosting a reception at the US Capital Visitor Center on Wednesday, February 25th at 2:30 to 4:30 PM Eastern Time. So if you’re in the DC area, we hope you will join us. We’re going to be bringing together advocacy leaders, partners, friends, policymakers, and more to reflect on all the impact that Lindsay just mentioned of the decade-long campaign. We’ll be celebrating how far we’ve come and looking ahead to all the work still to be done. So we hope to see you there.

We’ve also been working hard to prepare to debut our brand new website, which is now live. It’s easier than ever to learn about heart valve disease, read and share personal stories, explore different ways to get involved and share some of our materials, which we’ve also updated for this year. So I know our partners also have some really exciting events and you can check those out on our events page on the website. So that’s this year, but looking forward to the future, what do you want to see for the next 10 years?

I’d love for us to make the need for this day obsolete, that everyone would know what valve disease is, but for now, I know that’s not possible and we still have a lot of work to do.

Lindsay Clarke:

Well, first I want to put a plugin for that website because it’s gorgeous. It’s easy to use and it has a ton of information, not only in how to become an advocate or a partner, but also to learn about valve disease. So really, there’s a lot of great stuff on there. So congrats, Katrin. For the next 10 years, I’d love for us to make the need for this day obsolete, that everyone would know what valve disease is, but for now, I know that’s not possible and we still have a lot of work to do. So I’d like to see more partners join us because the more partners we have, the more we can impact folks and raise awareness. I’d like to continue to find… We’ve had some incredibly clever, creative ways of engaging our partners. I want to continue to find those ways to get more stakeholders and advocates involved.

We have a number of international partners. I’d love to expand our international reach. This isn’t a unique problem to the United States. I’d love to encourage more people to listen to their hearts. And what that means, we’ve already touched on it a bit, is knowing the symptoms, knowing the risk factors, talking to your healthcare professional if something feels off. And we are always our best advocate. So part of what we do at the Heart Valve Disease Awareness Day campaign is to empower people to get the care that they need. So I just want to raise that activation number, have more people know what they need and how to listen to their hearts.

Katrin Werner-Perez:

That’s so powerful. And thank you for joining us. I can’t wait to continue to work with you and spread this important message and continue all this work. For everyone listening, as Lindsay mentioned, heart valve disease can be serious, but it can be successfully treated in people of all ages, but early detection is key. So make sure you talk to your healthcare provider about getting a stethoscope check. More information, including symptoms and risk factors can be found on our new debuted revamped website, valvediseaseday.org.

Thank you for joining us for another episode of This Is Growing Old. To learn more about the Alliance’s efforts to support older Americans, visit us at agingresearch.org. You can also listen to more podcasts of This Is Growing Old wherever you get your podcasts. Thank you.