Who Do You Play For? Evan Ernst’s fight to save lives from Sudden Cardiac Arrest
Who We Play For (WWPF) is an organization born out of the loss of Rafe Maccarone, who passed away after suffering a Sudden Cardiac Arrest (SCA) on a high school soccer field in 2007. Avive interviewed Evan Ernst, Executive Director, and former teammate of Rafe’s to learn more about his story and what motivates him.
The condition that caused Rafe’s cardiac arrest was hypertrophic cardiomyopathy (HCM). Evan’s community was shocked to learn that Rafe, a seemingly healthy, and active 15 year-old, who passed all of his sports physicals, could die from heart disease while playing soccer, the sport he loved. Evan and his teammates have since learned that Rafe’s condition was detectable, and is the leading cause of SCA in sports,
In 2014, WWPF was established as a 501(C)(3) and began partnering with schools across the state of Florida, amongst others, to provide affordable ECG screenings for students. Their goal is to show the country that not only is it imperative, but it is also possible to deliver affordable ECG screenings to every child, no matter their level of athletics, socio-economic status or geographical location.
Transcript:
Avive: Brevard County, Florida may be best known to outsiders as home to the Kennedy Space Center. But residents know that for the youth, soccer is king. A quick Google search for soccer clubs in the county is met with almost overwhelming results. Soccer is just as much a way of life here as beach bumming is.
Evan Ernst: We’re from a small town. Cocoa Beach is famous for NASA, famous for Kelly Slater, famous for non-migratory manatees. It’s a great town to visit. It’s Orlando’s beach town. And we played soccer with the same group of kids since we were seven or eight years old.
Avive: This is Evan Ernst. On November 30th, 2007, Evan witnessed his teammate and friend, 15-year-old Rafe Maccarone, collapse from Sudden Cardiac Arrest during soccer practice. Rafe passed away the following day, and Evan’s life has never been the same.
Evan: We knew nothing about cardiac arrest. We knew nothing about most things. It was the day after Rafe had scored the game-winning goal against one of our rivals in the final seconds, and we all showed up to practice that day. I actually came a little bit late. I had a sore knee and was icing it, trying to miss some running as well. And I showed up and Rafe had just collapsed and begun to go into cardiac arrest. We were on a field full of teammates and coaches who really had no clue. The first person to drop down and do CPR was one of our Co-founder’s fathers, Coach Schultz. And then he was tagged out by a kid we grew up with named Nino Holmes, who had just learned CPR in ROTC. There was a requirement for ROTC.
Evan: Zane and Kieren, two of our other Co-founders, ran into the school looking for an AED. Really not even an AED, they were looking for help. They didn’t know what they were looking for, other than they knew they needed help. We watched an ambulance not really have an emergency action plan for the high school down, and take longer than it really should have. Understandable, but no excuse, we gotta be better. And they ran the AED with Zane and Kieren to Rafe. And at that point, it had been over 10 minutes and so Rafe at that point was brain dead. And then we all raced with the ambulance, crazy teenagers in cars, trying to get to the hospital. We waited and watched Rafe get airlifted to Arnold Palmer, specialists in pediatric cardiology, to try and give him a chance at life. And then we waited over the next couple of days until we finally heard the news. Rafe didn’t make it.
Evan: We watched our teammate, and my older brother’s best friend, die of a detectable heart condition on the soccer field with us all at practice. We went off to college and we were as furious as we were the day Rafe died. And we realized that Rafe’s life represented thousands of kids across the country every year. And we figured that, as crazy college kids with a little bit of resources from our university, we might be able to help spark a national movement to change that, and to protect every kid’s heart, no matter their socioeconomic status, their geographical location, or their level of athletics.
Avive: In 2014, Evan and his friends started Who We Play For, a 501(C)(3) with a goal of providing affordable ECG screenings for students.
Evan: I think the most beautiful part of Who We Play For is that when it was dreamed up in Room 114 of our fraternity house at FSU, by a group of lifelong best friends, we never said, “How do we create a job for ourselves forever?” We said, “How do we solve a problem and move on with our lives?” Because we thought this was important enough. And it impacted us enough to think that when it came to the end of our lives if we didn’t do everything we could to be a part of that solution, we’d probably regret it forever.
Avive: According to Evan, saving lives, as it pertains to Sudden Cardiac Arrest, is a two-step process. Yes, AEDs on-site are essential, but there needs to be a plan put in place for proper training for potential first responders and also for maintaining AEDs.
Evan: There’s been maybe trillions, definitely billions of dollars invested in the AED market for who knows how long? And it’s been a great thing. I know plenty of kids that are alive because of it. But I know plenty of stories of kids, like Rafe, whose AED was locked in a school nurse’s office. The school was unfamiliar with what an AED was and how to use it. And the whole idea of an emergency action plan was a foreign language to our community at that time. The emergency action plan, in our case, would have been that when Rafe went down, every step to save Rafe’s life would have been rehearsed by the key players and the leaders of that school, and the coaches. And even the kids. Just like we’ve been doing fire drills since we were kindergartners, but that’s not how we do it here yet.
Avive: Evan can’t stress enough the importance of having a plan put in place in conjunction with an AED on the premises and cites a recent case where a student lost his life due to a lack of AED maintenance emergency action plan.
Evan: Part of that is making sure you’re prepared with your life-saving devices like an AED. Every school has an AED in the county now, and that’s not just because of us, that’s because the school board was forward-thinking enough. And honestly, even since then, there’s been at least one scenario in DeLaura Middle School where a young student-athlete lost his life because the AED wasn’t working properly. So that’s 10 years in the future, a whole lot of advocacy later, and right in our backyard. It can still happen.
Avive: Evan says that there are three things that need to happen in order to improve safety for students in our schools.
Evan: I think there’s a whole host of issues, but in a nutshell, three things that we need to change across all schools in America. For most schools in America, there needs to be more investment in school health, across the board. What school nurses and athletic trainers are paid is in most school districts just indefensible; it’s wrong and it’s not sustainable in any way. And it results in a dangerous situation for kids. And if this truly is the leading cause of death in a school district and in schools, and in sports, and if that’s the best thing we can do, to invest in our first line of defense? The protectors of our health? That’s shameful.
Second, AED’s just really aren’t taken seriously enough because there is just a serious lack of awareness across the board. I think there needs to be more investment in AEDs.
And third, the public health awareness piece that comes along with those AEDs. It’s all got to be a lot better.
Avive: Evan believes that AEDs need to get better in order to save more lives.
Evan: The thing that will forever blow my mind the most is that we’ve spent this much money on AEDs, public health awareness, and CPR. But we have changed the Sudden Cardiac Arrest survival rate by 0%. And it’s still a number one cause of death in America, etc.? That’s absolutely insane! At this point, technology is so good that there’s no excuse to not have a better technological tool to make AEDs more useful. Not the fire extinguisher on the wall, because that’s not working. Hopefully, technology can help make this easier for everyone.
Avive: Evan says that prevention is the biggest way to save lives and Who We Play For is upping the game as it pertains to preventative heart screenings.
Evan: Preventative heart screening in the United States is what you get when you show up before you play sports for your youth wellness checkup. There are different levels of this, as with everything, but starting with a stethoscope, and the American Heart Association’s 14 Point Questionnaire. You can level it up with an EKG and or an echocardiogram and other sorts of tests as well.
Who We Play For’s belief is that if you’re going to get a youth wellness checkup in America, it should include an EKG, also known as an ECG, which stands for electrocardiogram. Research and stats are a bit all over the place on a lot of things, including this, but they say an EKG, a regular PPE, pre-participation physical exam, will catch anywhere from 1 to 4% of heart conditions. That’s not counting the fact that it could be a chiropractor, God bless them, but listening to the heart is not the most effective thing in the world. And they’re providing tens of thousands of physicals for student-athletes across America. So that’s the 1 to 4%, and that’s across the board.
Now we add an EKG, and then it’s up for debate, but you’re catching anywhere from 80 to 95% of heart conditions like hypertrophic cardiomyopathy, which is what Rafe had, anywhere from 90 to 95%. So it’s just a whole hell of a lot better than what we’re doing right now.
Avive: In Bravard County, Florida EKGs are now a requirement for any student-athlete before they can participate in sports and Who We Play For is making sure that EKGs are affordable and available to all students.
Evan: It was a 10 year plus journey from our boyhood years to our manhood. The beautiful thing is that now that one has fallen behind the movement, there’s a snowball effect happening. In a pre-COVID-19 world, we were ready with dozens of districts that have a similar policy. The process here in Bravard and Osceola, how we’ve been able to shepherd the policy through was we needed to answer these three critical questions.
One, we charge a fee for the service, a nominal $20 free. And if you cannot afford that fee, who’s paying for it? And so we fundraised for a decade. We’ve donated over a half-million dollars in heart screenings and we partner with the hospital systems and more to make sure that $20 is underwritten. So every kid has that chance.
Two, when the kids are flagged, we need to make sure that even the most vulnerable kids have the opportunity to be seen. So we partnered with the community health clinics and set it up where even if you were, for example, an undocumented “Dreamer” in Osceola county, playing sports and flagged, we can get you free pediatric cardiology care in a timely matter. And as a part of that, when we screened thousands of kids, and there’s a 3% flat rate, if you have insurance or you’re under-insured, we’re able to get you in within one or two days to see the specialist back in the field. So that was the second.
So first being the cost upfront, the second, being the medical infrastructure, and the third, being the delivery model.
We tried a million delivery models for ten years. Ultimately for us, our belief was that to level the playing field, the program at this point needs to be delivered en masse at the school system, often during the school day. Not every kid has transportation or parents that can take them on a Saturday or after school, whatever it may be. So we partnered with the school districts to roll the program out and through a combination of some tech and software, we can do each EKG in about a minute or two minutes, upload it to the cloud and have some of the best cardiologists, not just in the country, but in the world, be a part of the interpretation to make sure that that kid’s ECG is either good or it needs to be checked out for more.
Avive: Evan says that he is optimistic about the future of the implementation of the Bravard county policy across the country. So that Sudden Cardiac Arrest is no longer the leading cause of death in the United States.
Evan: I think for the first time in this movement there’s real potential for this to end. And that is when this policy is delivered effectively enough times, and a playbook is created on how it can be replicated. It definitely does not need to be Who We Play For. We’ll do it and we’ll do it gladly, but it can be anyone. And working with the University of Florida’s DNP program, doctorate and nurse practitioner program, we’re developing that playbook now. And we partner with a bunch of children’s hospitals to help roll that out as well. So I think that’s the future, but ultimately the idea of screenings in schools for all kids should be phased out once there’s enough support in the medical community to do this within doctor’s offices.
But I think one thing to put in context is COVID-19 is going to end hopefully in the next six months, or whatever it may be, but cardiac arrest, unfortunately, will not, unless there’s an AED that can use better technology to actually solve the problem, and more focus on catching the heart conditions before they result in an AED having to save someone’s life. So COVID-19 is on its way out. Cardiac arrest, I hope it will be as well, but it absolutely will not be if there’s not a reinvestment and investment into the idea that this is the leading cause of death and it doesn’t need to be.
