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46. Raising Awareness With Valve Disease Day Partner Karyne Jones

February 9, 2022   |   Matthew Thompson   |   Heart Valve Disease

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Show Notes

On February 22 we’ll be hosting our sixth annual Heart Valve Disease Awareness Day, a conference dedicated to increasing recognition of the specific risks and symptoms of heart valve disease, improve detection and treatment, and ultimately save lives. Valve Disease Day would not be possible without the more than 100 partners who have joined the campaign to lend their voices. Among the incredible organizations that we’ve partnered with is the National Caucus and Center on Black Aging, the only national organization devoted solely to providing effective leadership in making minority participation in aging services a national issue and priority.

This week, we sat down with NCBA president and CEO Karyne Jones to discuss the importance of health equity in combatting valve disease along with the NCBA’s role in raising awareness. 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:

Hi, everyone. And welcome to This is Growing Old, the podcast all about the common human experience of aging. My name is Lindsay Clarke, and I’m the senior vice president of health education advocacy at the Alliance for Aging Research. Joining us today is Karyne Jones, the president and CEO of the National Caucus and Center on Black Aging or NCBA, and of NCBA’s housing management and development corporation. NCBA is the only national organization devoted solely to providing effective leadership in making minority participation in aging services a national issue and priority. Before NCBA, Karyne was a federal relations leader in the telecom industry, served as legislative aid and public affairs officer, and White House liaison on Capitol Hill, and served for eight years in the Texas Legislature representing district 120 in San Antonio. Karyne serves on a number of boards and has received numerous awards, and we’re honored to have you here this morning, Karyne. Welcome. 

Karyne Jones:

Thank you so much for having me.

Lindsay Clarke:

We are thrilled. So I want to start off and have you tell our listeners about NCBA and the important work that you’re doing. 

Karyne Jones:

Well, the National Caucus and Center on Black Aging, NCBA, is the oldest aging minority organization in the country. Uh, we were founded by African American nursing home professionals who wanted to make sure that the voice of African American seniors was heard when they were developing the Older Americans Act. And so as a result of getting some, uh, leverage and getting a, a, a seat at the table, they were able then to make sure that these important programs that we know even today, uh, help senior communities in transportation, in nutrition, in all kinds of programs affecting, uh, aging and, uh, and getting older, um, that, that communities of color were not excluded. And so that’s how we were founded.

Uh, we’ve been around for 52 years and we continue with that mission, um, just making sure that we’re improving the quality of life of people and particularly communities of color. 

Lindsay Clarke:

And you are involved in so many issues, including this month is American Heart Month and we’ll be celebrating, uh, Heart Valve Disease Awareness Day on February 22nd. Uh, the Alliance for Aging Research leads this campaign with more than 105 partners, including yours. So can you tell us why you thought it was important to partner with a campaign and what you’re doing to raise awareness about valve disease?

Karyne Jones:

NCBA has been involved in health programs for many decades, and one of the things we wanted to do is to make sure that we empower our seniors, our older adults, uh, with information so that they can be advocates for their own health. And the best way to do that is, is that, you know, they ma- may not necessarily know about a specific way to address chronic diseases, such as diabetes, uh, cardiovascular disease, cancer, those things, we try to provide them as much up to date information, so again, they can be advocates for their own health.

The one thing we do know in terms of cardiovascular disease, it’s a real problem in the African American community, and we know that specifically, uh, no one has probably heard of heart valve disease. And so the best way for us to make sure that we increase that awareness is to make sure that we are participating in acknowledging that, uh, this is a disease that is very prevalent in our community, this is something you should be aware of, these are the symptoms, and these are the things you should be asking your healthcare providers to make sure that we can avoid late diagnosis or no diagnosis at all. So that’s why we’re participating, because we know it’s important to get this information out to our older adults. 

Lindsay Clarke:

Absolutely. And you’ve been such a strong partner of the campaign, we’re so grateful to have you. And when we talk about valve disease, um, we talk about the greatest risk factor being age. Um, but we also know that African Americans develop valve disease at younger ages. And at the same time, we know that the odds of being referred to a cardiothoracic surgeon for the treatment of that valve is 54% lower in African Americans than in whites. Why do you think this is happening? And what can be done to address this serious inequity? 

Karyne Jones:

Well, we know health equity is a real issue, uh, in this country. And so it’s not just for s- … uh, specifically for heart disease, but it’s probably around cancer, diabetes and everything, it’s late diagnosis. And we’d have to do a whole nother show again on social determinants on why that is and why there is, uh, equity in healthcare delivery. Uh, but specifically with … particularly with heart disease, we know that the contributing factors are poor diet, nutrition, uh, l- lack of just information, lack of quality healthcare, and then people not understanding or knowing. 

And, uh, you know, we can’t expect doctors, uh, sometimes to always have all the answers, particularly if they’re a primary care doctor. So if you go in and say that you have this, they may treat you for high blood pressure or something else, not recognizing that maybe they need to go a little bit further and test for something like heart valve disease. Well, if we empower, again, our old adults to know about specific things like this particular disease, they can bring that to their attention and their doctor may then refer them a little earlier.

In terms of younger African Americans, uh, one of the things that we approached over the last decade is, is that we know that we’re trying to get information out to our older adults, but we know that our old older adults are very, very influential on their families. Most of them are the matriarchs and the patriarchs, they’re the ones … and they’re the role models, uh, for their younger relatives. And so once they have the information, we make sure that they share that, so that when you’re younger you can then know this information and you can look out for it. And hopefully, again, that we can really try to get an earlier diagnosis and let them know that they should be referred to specialists just to make sure that this isn’t something that they’re suffering from. 

Lindsay Clarke:

Those are really important points and they really are in sync with the messaging of the Valve Disease Day campaign, because we talk about listening to your heart, right? So if something feels amiss, please go talk to someone. But also know your risk factors. And while age is the greatest risk factor for valve disease, there are so many other contributing factors, so it’s really important, if you’re dealing with other cardiovascular issues, or diabetes, or high blood pressure, that you realize that you need your heart listened to and checked on a regular basis. So thank you, that’s in- incredibly important to underscore. So NCBA has so many amazing communities and networks, where do you think the messages of the Heart Valve Disease Awareness Day campaign most need to be shared? Like where can we start? 

Karyne Jones:

Well, we certainly will be doing it the way everybody does, we’ll be working in our social media category. But what we’ve discovered over the past 10 years, and particularly as we have had to address COVID, is, is that our older adults aren’t necessarily on social media, and so we have to go the old school route. Uh, we try to make sure that radio has the information because a lot of our, our constituents definitely listen to the radio to get their information. Uh, newsletter, local papers and co- community papers, newsletters, church bulletins, any and every way that we possibly can in addition to providing webinars and special workshops now that we are able to, uh, meet in person more. Uh, just giving out information.

We know that one on one reaches more people than just trying to do a blanket brochure or a blanket, uh, uh, uh, message, we try to do as much one on one and cater it to different, uh, communities. So we know that radio, uh, newsletters, local newspapers, um, church bulletins, uh, reaching social and civic organizations, uh, those are the ways that we get information out to reach our older adults, and that’s the same thing we’ll be doing for Heart Valve Disease Day. 

Lindsay Clarke:

And you know, that one on one is so important. And, and going back to a point you made earlier about older adults being the source of a lot of, uh, wisdom for their … the younger generations, we talk about that a lot, we, we talk about the truth tellers. Um, and I think it’s really important that we’re, we’re working to arm everyone with the facts, whether it’s about vaccines or heart valve disease, and that, um, we’re, we’re sharing it within our communities and with, uh … within our families. What else is NCBA doing and working on that you’d like our listeners to know about? 

Karyne Jones:

Oh my goodness (laughing).

Lindsay Clarke:

Where to start, right?

Karyne Jones:

Where to start? Which we’re very happy about because, uh, a lot of nonprofits, uh, had to sort of slow down their activities as a result of the pandemic coming on board, it seems like ours sped up. Uh, we have been very active over the last couple of years just ensuring that our community was made aware of the importance of getting the COVID vaccine. Uh, we initially had to work on making sure that the testing and vaccine sites were located in the community so that they were accessible. Uh, we have continued, uh, to try to improve on that.

But we are also, we’re … we ourselves are hosting a webinar on February 8th, dealing with heart disease and getting more information about … and it will include talking about, uh, heart valve, uh, disease awareness, uh, so that that’s included as, as part of our letting people understand their cardiovascular history and things that they should be looking out for. 

Uh, but we constantly are doing things, uh, on mental health, we are doing things on diabetes, most of the chronic disease management tools that are needed to try to help improve, uh, the quality of life of most of our older adults. And we don’t want them to wait until the symptoms are there, we want them obviously to recognize how they can maybe prevent that. And that’s why we say that our older adults are such role models for their younger family members. So hopefully, as they age, they will not have the, the problem, uh, uh, with health that, uh, maybe could have been avoided, uh, for older adults had they known about smoking, had they known, uh, the dangers of eating too much, uh, uh, bad foods, you know, had they known those things.

That’s, that’s the information now that they’re sharing, don’t do this, do this, and then you won’t end up with high blood pressure cholesterol, those things. So we’re involved in all of those kinds of activities and continue to, uh, make sure that, you know, we, we reach health equity, uh, in our community because, again, a healthy society is a productive society. You don’t want a lot of sick people that drains everybody. So we’re, we’re trying to make sure that we do our part to educate folks. 

Lindsay Clarke:

And where can … I know people who want to check out your cardiovascular webinar that’s coming up can go to valvediseaseday.org to learn about it, but where can they go to see all of the other great things you have planned? 

Karyne Jones:

Well, they can go to our website, which is ncba-aging.org, uh, and then of course we’re also on all the social media sites, uh, under NCBA1970. Uh, so there’s definitely information, not only about this, uh, and our heart disease webinar and about Heart, uh, Valve Disease Awareness Day, but they can also find out about all the other programs that we’re involved in.

Lindsay Clarke:

Great. Well, so before we wrap up, I have two more lighthearted questions for you that we like to ask all of our podcast guests. And the first is, when you were a kid, what did you imagine that growing older would be like? 

Karyne Jones:

Well, growing older to me was the example of my grandparents who all died in their early seventies of heart disease. And so I just assumed that by the time I got to be 70 I would also be like them. Uh, I am approaching 70 myself now and I am in no way, uh, the old ladies that my grandmothers were (laughing), uh, in any way in that fashion, because I’ve been able to learn and understand why it’s important to do certain things, my health. So they didn’t have that advantage, I wanna make sure that other people have the advantage of the information and the opportunities and the access to healthcare that I’ve had.

Uh, and so that’s … Whe- when I got … when I was younger, that’s what I thought my life was going to be. I was gonna get old, I’d probably die in my seventies, and that would be the end. At this point, uh, with a 95 year old mother, I have a lot of more optimism, and that’s because she took care of her health, she knew more about how to advocate for her health than my grandparents. And so I’m hoping and looking forward to a long life like she and my father had. My dad died at 89, uh, but my mom is 95 and still going, so I’m looking forward to a long life and living one like she’s had. 

Lindsay Clarke:

That’s fantastic. And I think, you know, there’s a lot of wisdom that we learn as we age, um, and, uh, obviously that’s a, a key piece of what you found, but what do you enjoy most about it? What do you enjoy most about growing older? 

Karyne Jones:

Well, I like the freedom that it gives you. Uh, at this point in my professional career, I have nothing else to prove, I have nothing else to try to achieve, I just wanna do well at what I’m doing, uh, because I’ve learned from all my experiences that I’ve had. Uh, I think when you get to a certain age, uh, you enjoy other things, like family time is much more important to me than it was when I was younger. Uh, and I tell you what, my greatest joy is seeing my children be parents to my grandchildren, uh, which is just remarkable. And my kids tell me all the time that I treat my grandchildren a whole lot different than I treated them.

Lindsay Clarke:

(laughing).

Karyne Jones:

And I say, “I don’t have the responsibility of my grandchildren as I did for you (laughing), and I was learning with you.” (laughing) So, uh, but I get so much joy out of that. So growing older gives you a peace of mind. Uh, if you’re blessed as I’ve been in my life, uh, to be able to have family, to have good health, uh, a wonderful one career, uh, good friends and live in a community that you know cares about each other, uh, that’s what growing older has been, uh, really special for me. 

Lindsay Clarke:

Well, thank you for sharing that. I wish that for all of our listeners.

Karyne Jones:

I do too (laughing).

Lindsay Clarke:

And thank you for coming on today. And to all of you listening, thank you for listening to This is Growing Old. If you’re enjoying the show, please subscribe to our podcast on Apple podcast, Google podcast, Spotify, or wherever you get your podcast. You can also learn more about the Alliance for Aging Research at agingresearch.org, and follow us on Twitter, Facebook, and Instagram. And don’t forget to learn about valve disease at valvediseaseday.org, and listen to your heart this Valve Disease Day.

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