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John Lewis, Executive Director of Heart Valve Voice US: Raising Awareness of Heart Valve Disease

Published February 10, 2021

Show Notes

February 22 marks the fifth annual Heart Valve Disease Awareness Day, a day dedicated to spotlighting the importance of detecting and treating heart valve disease. Valve Disease Day would not be possible without the 90 partners who have joined the campaign to lend their voices to the effort to raise awareness about heart valve disease. One of those partners is Heart Valve Voice US. On this episode of the podcast, Alliance for Aging Research Vice President of Health Education and Advocacy Lindsay Clarke speaks with John Lewis, Executive Director of Heart Valve Voice US, about how the organization is raising awareness of heart valve disease. We’re looking forward to celebrating this year with a Valve Disease Day virtual celebration, a Facebook Live, a Twitter chat, and more. Please visit https://www.valvediseaseday.org to see how you can get involved.

Episode Transcript

Lindsay Clarke:

Hello and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. As you’ve probably noticed, I’m not your regular host Sue Peschin. Sue mentioned on the last episode of the podcast that you would be hearing some new voices this season, and I’m one of them. My name is Lindsay Clarke, and I’m the Vice President of Health Education and Advocacy at the Alliance for Aging Research. I’m so thrilled to be guest hosting today’s episode, especially because we’ll be talking about Valve Disease Day, a project very near and dear to my heart.

Lindsay Clarke:

February 22nd marks the fifth annual Heart Valve Disease Awareness Day, a day dedicated to spotlighting the importance of detecting and treating heart valve disease. We’re looking forward to celebrating this year with a Valve Disease Day virtual celebration, a Facebook live, a Twitter chat and more. Be sure to check the show notes with links to how you can get involved.

Lindsay Clarke:

Valve Disease Day would not be possible without the 90 partners who have joined the campaign to lend their voices to the effort to raise awareness about heart valve disease. One of those partners is Heart Valve Voice US. Today I’m so happy to share that John Lewis, Executive Director of Heart Valve Voice US is joining us on the podcast to talk about how the organization is raising awareness of heart valve disease. John, thank you so much for joining us today.

John Lewis:

Thank you, Lindsay.

Lindsay Clarke:

John, please tell our listeners about Heart Valve Voice US. What is your mission and what are your key programs focused on?

John Lewis:

We are a nonprofit patient advocacy organization, and we’re focused on improving the diagnosis, treatment and management of heart valve disease. The organization has been around three or four years, and I joined about a year and a half ago as executive director.

John Lewis:

So how do we go about doing this? We really work in three strategic areas that I like to put in these buckets. We have patient community and awareness, we have training and research support, and then we have our policy and advocacy work.

John Lewis:

In the patient community, which we call My Valve, My Voice, we launched that last June and that continues to evolve. We wanted to create a private space for patients to interact with each other and for us to be able to share information with heart valve patients and them to interact with us.

John Lewis:

We provide a variety of resources in that community, and we’re going to be building out a way for patients to access more opportunities, like to participate in surveys and focus groups and things like that. We have also segments for people looking for information about heart valve disease. They may just be curious. We have people who have been diagnosed and are evaluating their treatment options and maybe looking for information on different treatment options, and people who have experience with different types of treatment.

John Lewis:

Then we have those who have already been treated, who are looking for other ongoing support. We also have a section there for their care partners, which is a very critical segment in this group where we tend to have older patients in the heart valve space. We’re looking at creating additional sub-communities there. We also have a simplified clinical trial finder, and that’s all part about raising awareness about heart valve disease and educating patients, and we’ll talk more about some of our specific awareness and education efforts later.

John Lewis:

In the area of training, we’re running a program for what I like to call research advisors or research advocates. This is a program funded by the Patient-Centered Outcomes Research Institute or PCORI. It’s actually modeled after a program The Alliance for Aging Research runs, and this can be considered, I would call it basic training for what’s involved in research. It’s how clinical trials are designed, ethical considerations, interaction with regulators like the FDA, as well as the role industry plays and how to influence the payers, whether they be private or Medicare.

John Lewis:

The final component of this training, our last module, and we’ve received really great feedback on this, is a communications workshop for helping patients tell their story most effectively. We’ve had great response to that. The goal of all this training is to get patients involved in research through advisory boards or focus groups or review panels for clinical trials. We want the patient voice reflected in research so the research that is being done is value to them.

John Lewis:

The question that comes up is what is a patient-centered outcome? I’ll draw the distinction between a patient-centered outcome and a clinical outcome. If we look at a clinical outcome with heart valve disease, it may be sealing off a valve that is leaking and how effective is that particular procedure in doing that, and that’s fine. If you look at other areas, we may be looking at lowering cholesterol or lowering blood pressure or something like that. So those are pure clinical, medical measures.

John Lewis:

But what’s what additionally is important to the patient? It may be they may want to return to work more quickly, and that may be help them in their evaluation of a procedure or an outcome that’s important to them. They may want to be able to play a round of golf, and that’s important to them, or walk to the bus. So that’s the type of patient-centered outcomes that should be incorporated in research, and often aren’t.

John Lewis:

So we hope that these patients we are training will have input into clinical trial designs so that they’re appealing for patients, and the more appealing they are for patients the more patients will participate. We need more patients in clinical trials all over the place, especially in heart valve disease.

John Lewis:

Then how should regulators and product developers and payers consider the patient perspective? That’s an emerging area. Regulators have been more engaged and product developers are trying to get more engaged and we’re really working to try to have the payers weigh patient preferences in the reimbursement and coverage decisions that they make.

John Lewis:

The next step after this network is created is to bring opportunities to participants to participate. We’ve got some early model projects going on now with some researchers from Duke, for instance, and we’re looking at some much larger patient recruitment projects for clinical trials.

John Lewis:

On the advocacy front, I’ll just mention one current initiative. We have an issue with Anthem Blue Cross Blue Shield, where they’re only major insurer that’s not covering TAVR for low-risk patients and some other transcatheter procedures. They have 42 million customers in 13 States, so that’s a pretty big deal. So we’re running a mini campaign to encourage them to change this misguided policy, and hopefully by the time you hear this they will have reconsidered and changed their coverage policy and if not, we’ll work to keep that coverage on.

Lindsay Clarke:

Well thank you, John. You’re doing amazing work to put together a great strong network of heart valve patients and to get them involved in research and make sure their voices are heard. One thing we know is that people don’t always know when they have heart valve disease though, and so, as you know, February 22nd is Heart Valve Disease Awareness Day. How is Heart Valve Voice US participating and how can others help raise awareness on Heart Valve Disease Awareness Day and throughout the entire year?

John Lewis:

We’re participating in all of the social media and video components of Heart Valve Disease Awareness Day, the tweet chat, we’re really trying to support the effort any way we can. I know you’ve been gathering patient videos for PSA campaign, and that’s a great effort and a great idea. We try to support that as well and get the word out on that as well, and I think we did have some of our patients engage in that.

John Lewis:

One of the really important aspects of raising awareness is bringing all these groups together, and you do that so well under the umbrella of this Valve Disease Day. This year, in addition to the Awareness Day we’re trying to help WomenHeart, an organization we work with, with their 29 Days of Heart Campaign, we’re helping Mended Hearts with some of their initiatives, and we’ve gotten to work with the American Heart Association to jointly amplify our programs. They have some great resources for patients, and we think we may have a little more reach into the patient community. So we’re looking forward to building that partnership with, with AHA.

John Lewis:

The bigger point is heart valve diseases is not well known. So to the extent that we can feed into larger awareness activities around heart valve disease, that’s better for us. In addition to the specific valve disease day activities, it’s really more like a week or a month that you run or a year, and in Europe, there’s a separate valve disease week in September that many of our European partners participate in.

John Lewis:

So one day is great to spotlight the disease and these diseases, but we need to keep that rhythm of awareness going throughout the year, you guys do a good job of that. We try to amplify that and work on our own initiatives, and it’s a big task.

Lindsay Clarke:

Definitely. I think year round awareness is important. Why do you think that public awareness of heart valve disease is so low?

John Lewis:

I think there are several factors. Valve disease tends to affect older people, not exclusively, but primarily. It’s not something you can necessarily control. You can’t say, well let’s just quit smoking or let’s lose weight because while that may improve the condition it’s not really a cause and effect disease or diseases.

John Lewis:

So when we think about the heart, most people think about high cholesterol or AFib or blocked arteries or a heart attack or heart failure or something like that, and they’re not really thinking about heart valve disease until that’s the diagnosis they get, which is part of the awareness problem. It’s not cancer, it’s not Alzheimer’s, it’s not diabetes, but it’s not technically an orphan disease. These are not orphan diseases that might get a lot more attention.

John Lewis:

So it’s it’s really my job at Heart Valve Voice to address this and to work to raise that awareness that it’s not simply something you have to accept. The symptoms are not simply getting older, but they’re common. They’re treatable, and we want patients to get diagnosed and get the proper care.

Lindsay Clarke:

Yeah. I think that’s a really important point. With symptoms like fatigue and just slowing down and feeling like things are harder than they used to be, I can see where people might dismiss them as just a normal part of getting old. But we need people to realize that it’s not normal, and there’s something that can be done.

Lindsay Clarke:

Heart Valve Voice US is part of the JustGo campaign, which encourages those with symptoms of heart or stroke emergency to seek medical help without delay. Who’s collaborating on this campaign with you and why is it so important?

John Lewis:

The JustGo campaign was launched last summer through an organization that we’re very active in called Global Heart Hub. Global Heart Hub is a group of advocacy organizations focused on heart disease, including heart valve disease from around the world throughout Europe, UK, Japan, Mexico, Brazil, Canada, Australia. So it’s a real global effort.

John Lewis:

The campaign was started because with COVID-19, people were ignoring their symptoms even of heart attacks, strokes, and not going to hospital or getting diagnosed or treated. That’s still a very important message and we’re still seeing a lot of people ignoring their care.

John Lewis:

Just as an aside, one of the things, one of the issues with COVID that we’re only starting to grasp I think is that we’re never really going to know the actual impact on health or the actual death totals. Because aside from heart conditions, we don’t know how many people are avoiding colonoscopies or mammograms or other types of regular checkups and routine care that may catch a disease. So the impact is huge and the JustGo message I think translates into a lot of areas.

John Lewis:

What we’re doing now, and just launched a week or so ago, is we’re targeting the JustGo message to people who have been diagnosed with heart valve disease over the past year, since the pandemic started, but they’ve not gone back for a follow-up visit with their doctor or they may have had a procedure canceled and have not rescheduled. As an example, you may have a person who was diagnosed with valve disease a year ago, last February. Maybe it was mitral regurgitation or aortic stenosis or whatever the diagnosis may have been, and the doctor said, “Hey, come back and see me in six months.”

John Lewis:

Well that would have been August, and now the person didn’t go back in August because they weren’t comfortable going back for fear of COVID or reluctance, or maybe their hospital was full. Now we’re another six months down the line, and how much more has that disease progressed in that person? What is the risk now? What is that person’s individual risk of seeing their doctor, going for treatment versus the potential COVID exposure? Hopefully now the vaccine programs will kick in more and make people more comfortable.

John Lewis:

So if you’re someone who had a procedure scheduled, whether it was open heart surgery or TAVR. Then the pandemic hit and that procedure was canceled because it was considered elective, and we can get into a long conversation about how a heart valve procedure could be considered elective. But now that patient hasn’t rescheduled because of a fear of COVID or perhaps the original hospital is over capacity. So what do they do now?

John Lewis:

So our message with this campaign is for these patients to get back in touch with their heart teams to make that follow-up appointment. Maybe it’s through Telehealth or even a phone call, but not to give up and don’t just wait out the pandemic. Because the longer they wait, the more severe their condition may get.

John Lewis:

So the whole campaign is designed around encouraging patients to talk to a doctor, see if they can reschedule their procedure at another hospital if that’s what’s needed. We want people to look at and understand their individual risks of deferring treatment versus any risk of COVID. If it’s too dangerous for them, then stay away by all means. But have that talk with your doctor because your life is worth it, and that’s the overall campaign.

John Lewis:

I just want to take a moment on, on Telehealth, which we think can be really a key component of getting patients reengaged in their care. We did a snapshot survey in December, and at that time about half of heart valve patients that had a Telehealth appointment in the prior six months. Most of them were very pleased with how those appointments went, and we have resources in our patient community and on our website and as part of this campaign, like the American Heart Association has a great guide to Telehealth appointments for patients with heart valve disease so they can access that and make sure they’re prepared for the appointments and the appointment is productive.

John Lewis:

But we also know from that survey that there’s about 30% of patients out there who really have no interest in doing a Telehealth appointment. So we need to reach them somehow to get that message out. It can be a phone call. We don’t want them to just ignore this and wait till the pandemic passes before they visit their doctor again through whatever fashion.

Lindsay Clarke:

This is such an important campaign because it’s clearly critical that folks are having that conversation with their healthcare provider and finding out do they need to be in sooner rather than later. With valve disease it can be a watch and wait approach, but it can also be something that they need to be treated quickly. So being in touch with their healthcare provider, whether it’s through telemedicine or an in-person visit is so important. So switching gears a little bit, when you were a kid, what did you think growing older would be like?

John Lewis:

When I was a kid, even as a pretty young child, I was always pretty comfortable around adults. I was an only child and I always wanted to be older than I was. I was very impatient about moving into adulthood. It’s a situation of I wish I knew then what I know now, right? Because now we all want to be younger.

John Lewis:

But even being an only child, I had a very large extended family. My father was from a family of 10. My mother was from a family of seven. So I had lots of cousins and aunts and uncles. Especially on my father’s side, I saw growing older as really meaning, not really focusing on the physical aspects I guess of getting older, but meaning you were becoming a community leader or a political leader or business leader, to be someone that people look to for help or support or mentoring, even though that wasn’t really a term that a lot of people used back then.

John Lewis:

I really saw getting older as just taking on more responsibility. I was a pretty serious child, although also sometimes a jokester. But that aspect of just taking on that responsibility is I think what I saw as part of growing older.

John Lewis:

The physical part of it, I think I’ve got good genes except for some high cholesterol I’ve inherited. There’s a lot of Alzheimer’s really on both sides of the family. But the flip side of Alzheimer’s, and you know this as well at the Alliance, is my relatives tend to live long lives. They live long enough where they have Alzheimer’s. My mother’s 90, my father just turned 86. They’re both in good health. They live on their own. So now I think about that I’m only two thirds of the way through my life and what am I going to do for the next 30 years?

Lindsay Clarke:

Well so far, what do you enjoy most about growing older?

John Lewis:

If I put it in one word it would be appreciation. Physically I’ve got more limitations and things I can’t overcome. It’s harder to lose weight. I’m a runner, and I know I’m not going to get faster at my age. But there are other challenges I can find, and just to appreciate the ability to run and to appreciate the environment around me so much more, to appreciate a round of golf so much more.

John Lewis:

When I was a kid I probably took a lot of these things just for granted as we do, and now to appreciate travel or a concert or a bottle of wine, and to enjoy that moment. And being in this lock down for the past year just really magnifies I think that appreciation more. I’m so looking forward to going to a concert or just going out to dinner. That appreciation has come about and I hope that’s probably common maybe with people as they get older, I hope.

John Lewis:

The second thing I’d say that I enjoy is I’ve really enjoyed becoming a mentor, and I’ve done that formally in some cases. But it also evolved organically with a number of younger people I’ve worked with. They regularly reach out to me for career advice and to talk through other issues.

John Lewis:

That mentoring goes both ways, and I definitely feel like I get back as much or more than I give there. It’s kind of a way to stay young and to see how younger people think and communicate and conduct business. I don’t have kids, so I have a little different viewpoint on that without the responsibility of being a parent. So even though they’re younger it’s really a peer-to-peer kind of mentoring. I think there’s just so much to gain from those experiences.

John Lewis:

As much as we discuss diversity and understanding different points of view, whether it’s men and women or white and black or economic class, I don’t think we talk enough about young and old. Not even old, but just older and younger, and I think that’s neglected conversation that we should pay more attention to, especially in the workplace. There’s a lot to gain on both sides.

John Lewis:

I’ve worked with a lot of really talented young people, half my age. They’ve got great enthusiasm and creativity. But there is really no substitute for experience, for having done something. Sometimes I just like being the old wise man in the picture. So that’s a lot of what I’ve come to appreciate and learn and enjoy about getting older.

John Lewis:

I also like and very much appreciate that I’ve got the opportunity to work in an organization and help build an organization like Heart Valve Voice. I’ve got some freedom in this position and I don’t have to work purely for financial reasons. It’s nice to be at that point in your life where you can just do work that you enjoy doing and that is meaningful, and that hopefully has an impact on other people.

Lindsay Clarke:

I love that answer, John, because I think you’re thinking about what we all think about, which is what do we wish we could go and whisper to our younger selves and remind our younger selves what to appreciate. But on the other hand, it’s what our younger selves learn from us. What can we teach each other? What can we learn from people who are younger, people who are older and reminding ourselves and each other that we do have so much to learn. That’s really important.

Lindsay Clarke:

Turning back to Heart Valve Voice, where can people go to learn more about Heart Valve Voice US and its resources?

John Lewis:

Sure. Our website is a heartvalvevoice-us.org, and we are Heart Valve Voice-US because there was a Heart Valve Voice in Canada and a Heart Valve Voice in the UK and other Heart Valve Voices. So heartvalvevoice-us.org.

John Lewis:

You can to our patient community through our website as well, or we are in the process of transitioning into a stand-alone patient community, myvalvemyvoice.org. So that’s another way you can reach us. On Twitter, we’re @HeartValveVoice, and you can find us on Facebook and LinkedIn as well.

Lindsay Clarke:

John, thank you so much for joining us today. It’s really been great talking to you.

John Lewis:

Thank you Lindsay.

Lindsay Clarke:

That’s all for this week’s episode. If you enjoyed today’s show, please rate and subscribe on Apple podcasts, Google podcasts, or Spotify. Visit www.agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. Thank you, and remember to listen to your heart and join us on February 22nd for Valve Disease Day.