[COLD OPEN, clips from later in the episode]

Bethany/Hannah: Yeah, the "flash the boobs to save a life" campaign.

Drezden: Can you talk about what is going on? Why women are dying more?

Bethany/Hannah: Yeah, so the survival rate for sudden cardiac arrest, it's about 9%. That's a horrible survival rate. Then women are about 40% less likely to get the bystander help. Because when you use an AED on someone, you have to have their bare chest, so you do have to remove the bra to place the pads on it to send that electrical shock that would get your heart beating back to normal.

Drezden: Yeah, so the trick for improving my survival rate or having a heart attack is to not be a female.

[INTRO]

Drezden: This is the One Percent Heart, a podcast where we discuss the millions of Americans with congenital heart defects, or CHDs. In this episode, we're going to discuss CHD advocacy and how patients are viewed by society, including the often infantilizing view of an adult disease. Today's guests are the founders of HeartCharged, Bethany and Hannah. Through their advocacy, Bethany and Hannah have championed patients' rights, legislation, and a sense of community. And it's really a privilege having both here. Quick disclaimer, nothing said here is medical advice. We're going to talk about scars, medical-related trauma. Listener discretion is always advised. That out of the way, thank you guys both for being here today.

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[CONVERSATION]

Bethany/Hannah: Thank you so much for having us.

Drezden: Now, I didn't describe HeartCharged well enough. Can you tell me what the organization does in your own words and how it came about?

Bethany/Hannah: Yeah, so HeartCharged basically started as just an idea or a thought. Hannah and I had been diagnosed for a couple of years and then we realized, wow, we're so lucky to have one another, but there's probably so many other people out there, especially young people, that are probably dealing with similar things. Like, how do we connect with them? So we decided to use the power of social media and we created the Instagram page HeartCharged. From there, we became an actual nonprofit, 501(c)(3). And then through HeartCharged, we've been able to establish this huge community of other heart warriors and been able to connect them and connect other people together. We've been able to pass legislation in our school district to provide heart screenings for all children. We've been able to donate over dozens of AEDs. One of those AEDs actually saved somebody's life. And then we've been able to just do amazing awareness campaigns and connect with so many people.

Drezden: So you recognized how lucky you were to have that sense of community with one another and you wanted to expand it. Well, as someone who did not have that sense of community and it's made me very passionate to bring it to people, I respect that a lot. Something you said that interested me was how it started on Instagram of all places. Now, I'm not going to name names, but your Instagram has more of a following and more interaction than a lot of the major heart charities and CHD charities I follow. Why do you think that is? What is something that we can take away as to how you guys have been so effective in such a short period of time?

Bethany/Hannah: I think the way that we approach it is just we're really raw and real and honest about what we're doing. And I think also the fact that it's us commenting, messaging, we're the ones connecting with you, right? There's no disclaimer when you message us saying like, "Thank you so much for your message, we'll get back to you." It is us. And we have been known to, somebody will reach out at like 3 a.m. our time and it could be their time in the other part of the world. And we answer them because it really means that much to us and how much we want to connect. And I think because of that, people have shared like, "Oh my gosh, you have to meet the HeartCharged girls, you have to connect with them if you need anything." And it's through that. And I think that's just because we're super real about what we're going through, who we are, I think that makes such a difference. And we're very proud that you say that. We like, there's a badge of honor that we hope that people find. We are an interactive community. And I think also having our faces on the page so that you know that these are real people, these are real patients. So if I have certain questions, I know I can ask them. And I think that's maybe where other organizations struggle, when there's somebody else running their social media. It might also be run by someone who doesn't really have a heart problem. So they have to be like, "Hold on, I can't answer that question right away." So we're very happy for the success that we've had, to be able to build a community where people feel heard and represented and feel like they really do feel that sense of family and community there.

Drezden: So it's not some marketing intern replying to comments, it is real patient experience coming back as advice.

Bethany/Hannah: Yeah, exactly. And I think because, when you guys from listening to this do follow us on Instagram at HeartCharged, I think when you see our content, it's just something different. You don't get to see it. So definitely I think that helps too.

Drezden: I'm going to tie it straight to your content. I'm going to start with my own story. I told you guys this before, but I was recently at a conference, and I'm being intentionally vague here, sorry to the listeners, it is someone's private matter, but there was a photo posted of a CHD patient 20 years ago, a teenager, with a shirt that said "not dead yet" and the emblem of a broken heart. And two things happened. I said, "Wow, that's a cool shirt." And at the same time, I heard a lot of parents and medical providers cringe or have very negative reactions to that kind of adult content, let's say. Tying that back to your Instagram, I'm worried that patients are, CHDs are still seen as a childhood disease even though two-thirds of the millions of people living with them are adults now. We're living longer, we're living better. But why aren't we seen as adults? That's a big question though, just throw it at you.

Bethany/Hannah: Yeah, I think it's a struggle and I think that's kind of why we felt there's such an age gap. When you think of CHD you think like babies, one in a hundred babies are born with a CHD. And then you think heart disease is an old person's disease. And then you're like, where is the representation for teenagers and young adults and other adults? And so I think that's kind of why we started, like yeah, where's that young perspective? And referencing that shirt, "not dead yet", it's like we can relate to that. Like, wow, I'm not dead yet. And I think you kind of have to face mortality and it changes you. And I don't know why, we even have had experiences by our doctors going from pediatric to adult and you still feel seen as like, we weren't told stuff because "you're too young" or "we don't want to upset you." But it's like, okay, but how am I going to be the best patient? Why am I not feeling seen? Why do I keep being seen as a young person that I shouldn't know this? Hey, luckily science has made it that we are living longer, that we are living into adulthood. So why hasn't it yet caught up with us to be representing what is it like to be in adulthood? And I think that's where the power of social media comes, with people sharing about their struggles and doing it, that now we have real-life representation of what does it mean to be an adult with congenital heart disease. And kind of taking that narrative and pushing it and steering that narrative for ourselves to kind of get that representation that we hope for. But it's definitely, there's a long way. As you can tell, people still seeing it, especially parents or doctors, still kind of seeing that. But how can we keep pushing for people to see us?

Bethany/Hannah: I also think too, something that we've talked about with other CHD patients is back in the day, unfortunately, us as CHD patients weren't living into our adulthood, right? And we're super glad that medicine and things have changed and now that we are. But I think because, or how I feel personally, is like the kind of things revolving around anything with heart conditions, especially for people in adulthood and young adulthood, is so vague and there's not much research and study out there. And so I think there's like a huge lack. And so then people don't know how to talk about getting to be able to still be young and live your life while living with this condition. So I just think there's like a huge lack that we haven't even discovered yet. So yeah, that makes it kind of hard.

Drezden: So I'm a numbers guy, I'm going to put some numbers to what you just said because you're exactly right. You are spot on. I didn't cuss, I'm proud of myself there. At the same conference I went to, a lot of stats were shown. One of them being: in 1988, 49% of CHD patients survived their first year, which means less than half. 2018, it's 95%, and two-thirds either have or are expected to make it to 65 and older, well into retirement age. Putting aside for a second that that number might seem so horrendous in 1988 because of survivorship bias and how only the worst patients were ever discovered, it's still showing that we are living longer and living better. But the majority of patients are still lost to care from normal CHD, not severe CHD, not complex CHD, but most CHD patients are lost to care between childhood and adulthood, I think after age 12 to 18. Do you think that the lack of representation of adult patients, like you said, plays a role into that?

Bethany/Hannah: Yeah, and I even think like, I was dismissed by my pediatrician when I brought up that I've had fainting episodes. And I think again, that's why there needs to be education for the masses, like, hey, if you're having these symptoms, think cardiomyopathy, think heart condition, think these things. But also the doctors need to be thinking it too, especially your family doctor, the first doctor that you usually see. And we're meant as a society to trust your doctor. Like, if they tell you this, okay, they went to school, we gotta do it. But that narrative, sometimes doctors don't even see us as like, young people can have a heart problem. And not getting it checked out, and missing so many of those people right before it gets worse, before it gets severe. That like, yeah, I would be surprised if you couldn't miss this as I'm in congestive heart failure.

Bethany/Hannah: Something we always talk about, because Hannah and I both have implanted defibrillators, and then when you're in the doctor's office and you see the brochures, and it's usually all older people on the brochures living with this. And then it's like, wait, there's young people living with this too. And so there's again, this huge stigma because we've now only decided that old people have heart conditions and sometimes babies do and there's no in between. And it's like, how did we get here and how do we end up there? Right? So what's all happening in between? So it's just super wild that we're still living like that.

Drezden: No in between for 1% of the population. It is insane. And something you said there, you said "dismissed" with your fainting episodes. And I wanted to tie something to that: the, I'm not going to call it sexism, but it is, there is a problem with how women are spoken to. And tying it to your campaign, I'm forgetting what it was. It was the one where you guys kept pulling your shirts off on Instagram.

Bethany/Hannah: Yeah, the "flash the boobs to save a life" campaign. Yeah, yeah.

Drezden: Again, numbers guy. Can you talk about what is going on? Why that's important and why women are dying more?

Bethany/Hannah: Yeah, so the survival rate for sudden cardiac arrest, which is pretty much when your heart stops pumping effectively and you go unconscious, and pretty much within minutes could die if you don't have intervention like CPR and especially an automated external defibrillator, the survival rate is about 9%.

Drezden: 9%? Like less than 10%? Okay.

Bethany/Hannah: That's a horrible survival rate. That's really bad. And it could go up to over 70% if people were trained on CPR and AED and knew what to do and knew the signs and were more well aware of it. So it's like, it shouldn't be a thing, especially when we already have a horrible survival rate, that we should have equity in survival. We should have way better survival. So we kind of took it to the whole, again, it's that whole health stigma that boobs, because people started idolizing them and viewing them as something that like, "I can look at these in private, but in public, cannot be looking at these." So we did our campaign to kind of get people talking about that survival rate and get people changing their opinion. Like, someone, regardless of who they are, whether they have lumps of tissue or fat on their chest, should have the same chance of getting help during cardiac arrest. And so we did what we needed to do and we kind of made content that would get people talking. So we had to kind of flash our boobs to get people's attention, and also to accurately portray where the pads would go and what that would look like. Of course, when they're on the internet, we have our black bars and they're blurred. So you're not really seeing boobs. Sorry for the listeners who want to see that. But then we did something creative again and did a Sudden Cardiac exhibition, that's, you know, we just ended today actually in the UK, and that's also going to be brought to America next year, where we had paintings to kind of show the beauty of saving a life. And you could see, like when I go to a museum, you'll see boobs on display and that's not considered like, you're just like, "That's art, right? That's supposed to be beautiful." Kind of bringing that and drawing the pads on it. So when people see boobs, see, I see pads. I'm seeing a life being saved. I'm not just seeing "ooh, boobs." It's like, no, you see past and you see that person there who cannot do anything because they're unconscious. And when you act fast, you could save their life. And so that's kind of what we're pushing for. And a lot of people would message us and say, "I had no idea about this statistic. Oh my goodness."

Drezden: Yeah, that's me.

Bethany/Hannah: Yeah, exactly. And get people thinking about it. So we're very much big on, when we learn stuff, we want everybody else to learn it too, so that we can help change the statistics because they're not really in our favor at the moment.

Drezden: Yeah, so the trick for improving my survival rate or having a heart attack is to not be a female. That's a painful takeaway. I want to tie it back to everything we're talking about, if this is seen as a childhood disease, if a young woman, a woman in her 20s, 30s, 40s has a heart attack, people aren't, like you said, people don't know how to use AEDs properly. Won't assume that that's what's going on. They'll assume it's a fainting spell, like when you were going to your pediatrician and they dismissed you. And even if they knew what was going on, they don't want to take off the woman's shirt. If it was a child or a baby, I think they'd be more likely to, just like if it was a man, maybe not an AED per se, but more likely to see it as something severe. And I'm just trying to tie it back to how this is still seen as a childhood disease and what we can do. And your Instagram has a lot of followers. You guys have gotten legislation passed using public support and very coherent ideas. If you had to really simplify it for someone like me or someone listening, what can they do to help build on this? Do I need to go out there and take my shirt off and hold a sign saying "I have an open heart scar"? What can we do to help?

Bethany/Hannah: I mean, I would say the only thing that we take with us is our knowledge. And I think there's power in knowledge. And so I think that's why we kind of gear our stuff towards the everyday people, why our CPR and AED courses are to teach everyday people. We're not teaching from a paramedic point of view. We're teaching you what you could do fast and empowering you to save a life. And so I think it's just following, sharing our content so that more people on your pages who may not be getting this information are then getting it. We've heard from, our little sister is on our board and she'll promote, she was promoting the "flash the boobs" thing at her campus and talking. And actually a few months later, a girl was, was smoking a little bit too much weed and then was going into a panic attack. They had to call 911. And even while she was in the ambulance, they were like, "We were going to do an EKG, but we don't want to kind of show off your boobs. So we're just going to wait till we get to the hospital." She's like, "No, you can flash my boobs. I want you to do that test now." And right, that's not even with her going into cardiac arrest, but again, there's stuff in the medical field where they're like, we don't want to see the woman's breasts. But it's like, empowering yourself as a patient. So when you get put in those situations, go, "No, no, no, I know my rights, I know I want this, I want this testing." So I think it's really just sharing information with each other because this is life-saving information, these are life-saving skills that everyone should know and be well aware of. And the fact that heart disease is the number one killer and no one sees it as the epidemic it is, we really do need more people talking about it, talking about the seriousness of it. And then knowing that there's things that we can do about it. And I think coming together and sharing that information with everyone so they're well aware. Because the saddest is to see headlines still, especially of young people dropping dead from an undiagnosed heart condition, because they didn't think young people could have it, or they were dismissed, or people didn't know what to do when it did occur. So it's just information is everything and sharing it with as many people as you can, I think, is really what's going to help get it out there and get people talking and changing hopefully those statistics.

Drezden: I'm with you on that. My favorite is when someone will have an underlying health condition and pass and they'll be like, "This kid was drinking so many Monster energy drinks. Look at this." And he had an underlying condition. It's almost as if they discount our disease. Again because of the infantilization. Now, something that's a funny story about the ambulance, as funny as something like this content could be, but it does show the impact of HeartCharged for one, but also the need for a community, need for people like you guys to say, "Hey, I'm a patient. I've come through it. You can't tell looking at me. I'm a normal person." I guess what I'm trying to say here is: how can building off what you guys do, building off all the great organizations we both work with, building that sense of community, seems to be a direct path to saving lives. It's spreading awareness, spreading social knowledge, and hopefully bringing more people into the fold and making this common knowledge almost. It's weird to say that the most common birth defect, one in 100 kids, is not common knowledge. But I don't think I've met many people that haven't had to have it explained to them what this is. I don't know, that's just me spitballing now. But we've covered a lot here and something I want to end on: you guys have taken something very difficult from your experiences and turned it into something good. After all is said and done, what does CHD mean to you now? And I don't mean the definition. I know this one, it's a malformation in the structure of the heart present at birth. What does it mean to you, considering all the crap you've had to go through and all the good you've done?

Bethany/Hannah: I think to me it means that I'm stronger than I think I am, and that sharing your story means a lot more than you think it does. And it's a beautiful thing, especially when we see parents with kids that are diagnosed with heart conditions early on in their lives, and they'll reach out to us and they'll say, "Thank you for sharing that photo of you in your bathing suit. Thank you for sharing your scars out. Thank you for showing that. I know my kid will be able to have a normal life." And so when I think of CHD, I think of like, oh my gosh, if I can live the most normal life I can, I do have restrictions and stuff like that, and Hannah can, and all the other people we meet, then there's a future for us. There's hope for us. And we don't have to be so afraid. And then maybe one day we can normalize what it looks like to live with a heart condition every day and people don't have to be afraid to show that off and that part of them. Because I think it's a beautiful thing to have this heart condition, as much as some days suck and it's really, really hard. I think it's something we have to learn to be proud of.

Drezden: That was great. That was great. Just so our listeners know, the only time it's okay for a parent to message a 20-year-old girl about how good she looks in a bathing suit is when they're talking about their kid and how it's helping.

Bethany/Hannah: Exactly.

Drezden: I want to thank you guys both for being here. We're coming up on time. But before we disconnect, give me one more shameless plug for what HeartCharged is and how we can keep connected. How do I go follow you on Instagram? What's your website? What are you guys working on right now?

Bethany/Hannah: That's always the hard question, but no, please follow us. Please follow us at HeartCharged. Our website is GetHeartCharged.com. And HeartCharged is very much a community. And it's not just people who have heart problems, but it's people who want to do something about it. And if you even look back, you end up finding that a lot of close people have heart problems. So it's really just uniting and fighting for what needs to be done. We like to not just show the positive but show all aspects of what it means to be a heart patient and showing the reality of it. Our content is definitely eclectic because like we said, when we learn something, we want you all to learn something. If we discover something, we want you to discover it too. Being creative people, we like to kind of think out of the box and think why the statistics have been around this long, have to kind of be innovative of how we address this and get people talking about things that they don't necessarily want to talk about, like death, which is something that comes a lot with having a heart condition. But we are working on always some exciting projects. So you can definitely stay tuned on our Instagram to kind of see what we're coming up with. Being somebody who's a filmmaker, my biggest goal is to then see accurate heart representation in binge-worthy TV shows or movies and kind of get our message in the mainstream, where you can start empathizing with heart patients and see that that's a normal thing and it's okay to have it. But that it makes it a lot easier for people to talk about, because we know that this is a non-visible illness or disability. So sometimes it is hard for people to kind of think, "Eh, is there something wrong with you?" But it's nice to know that if you do get diagnosed with a heart condition or your loved one does, that there is a place for them here on HeartCharged. We don't have every heart condition, but we can connect you with people who pretty much closely find the same journey you're on. So we just want you to know that it's a wonderful place. It's one of the positive places on social media that we hope people have felt represented and seen in. And it's our happy place. So we hope that you'll join us there.

Drezden: Well, as someone who personally has the creativity of a calculator, I appreciate it when creatives like you guys make the content you do to draw attention to the issue in ways that I could never. I could never edit a film and I could never take my shirt off and get good results.

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[OUTRO]

Drezden: And that was Bethany and Hannah Keime of HeartCharged, two sisters making a difference. If you enjoyed it, please hit subscribe and go check out our page, there's a lot more where this came from. Please follow HeartCharged as well, their link is in the description. I appreciate you guys being here and I will see you at the next one.