Testimony – House Committee on Education and Cultural Affairs (Maine)

Chairwoman Kornfield and Chairman Langley thank you for allowing me to testify today before the Education and Cultural Affairs Committee in support of LD 1051 – an Act to Prevent Sudden Cardiac Arrest.

My name is Darren Sudman. I am the Executive Director and Co-Founder of Simon’s Fund, an organization dedicated to raising awareness about the warning signs and conditions that lead to sudden cardiac arrest and death in children.

Representatives Duchesne, Guerin, Higgins and Hubbell thank you for introducing this budget neutral, lifesaving legislation. I hope that my testimony today will make a compelling case to enact this bill into law.

Before I begin, I want to extend my thoughts and prayers to Katie Fugel’s family. Her passing inspired me to reach out to Representative Duchesne. Katie has brought all of us here together today.

Unfortunately, I have walked in the Fugel’s shoes. In 2005, my three-month old son, Simon, didn’t wake up from his nap. Following his death, we were told to get our hearts checked because babies just don’t just die. As a result, my wife, Phyllis, was diagnosed with a heart condition called Long QT Syndrome. It is a potentially-fatal arrhythmia.

Research conducted at the Mayo Clinic, revealed that up to 15% of all sudden infant deaths (SIDS) could be attributed to this disease. We also discovered that this condition was one of several that caused students, particularly student athletes, to collapse and die.

We learned that sudden cardiac arrest was not just an adult thing. It takes the lives of thousands of children every year. It is the #1 cause of death of student athletes.

With all of this in mind, we found our purpose. We started Simon’s Fund.

We started providing free heart screenings to students. To date, we’ve checked over 14,000 hearts and helped over 100 students discover conditions.

We launched a crowdfunding website, GotAED, that is dedicated to getting automated external defibrillators into places where kids learn and play.

We created the first of its kind cardiac registry of seemingly healthy kids called HeartBytes. Data and images are gathered at heart screenings, de-identified, and made available to qualified researchers, free of charge.

And, we got involved in advocacy.

In 2011, I heard a story on the radio about Zachary Lystedt, a student athlete from Washington State who got hit in the head during a football game. He came out for three plays. Upon his return, he was hit again which led to his paralysis. This led to the Concussion Safety Legislation movement.

All fifty states, within five years, passed legislation to raise awareness about the threat posed to student athletes by concussions.

In 2012, Maine became the 39th state to implement this law. Chairman Langley, thank you for sponsoring this bill, and thanks to many of you on this Committee. That law passed by margins of 116 – 3 and 125 – 10, so I am assuming that many of you voted yes to protect student athletes.

LD 1051 is giving you another chance to protect the safety and well being of student athletes. Actually, to save the lives of student athletes.

I started my career as a lawyer. I also really loved the game of Mad Libs. So, when I heard about this law, I changed head to heart and modified the symptoms, to create the Sudden Cardiac Arrest Prevention Act.

We introduced it in Pennsylvania in 2011. It became law in in 2012.

It was an awareness bill. It didn’t mandate tests or equipment. It just mandated education. It was budget neutral. The educational materials required under the law were provided to the State for free. Since its passage, we have worked with lawmakers and organizations in ten other states to get similar bills passed: Arkansas, California, Connecticut, Delaware, Indiana, Maryland, New Jersey, Ohio, Pennsylvania, Tennessee and Washington.

I am excited that Maine could be the 12th.

The impact of this bill presented itself to me on May 31, the day AFTER it was signed. At that moment, the parents and coaches of approximately 300,000 student athletes were required to know the warning signs of sudden cardiac arrest and how to respond if it happens. Today, this law reaches the coaches and parents of over two million student athletes.

When this bill becomes law in Maine, the information will reach an additional 50,000 student athletes, their coaches and parents.

Why is this important? Why should this knowledge be mandated?

In 2012, a study was published indicating that 72% of students who died of sudden cardiac arrest exhibited at least one symptom before their death. I am providing you with a copy of that study today.

In fact, the number one warning sign of sudden cardiac arrest is fainting, during or immediately following exercise.

Many think that a quick break and swig of Gatorade is the antidote for fainting. This protocol works for exhaustion. However, it can be deadly if there is an underlying heart condition, and unfortunately, there is no way to tell the difference by looking at the student.

So, it is critical for parents and coaches to recognize the warning signs, and it is imperative for the players who do faint, during or immediately after exercise, to be cleared by a licensed medical professional.

Enacting this bill WILL save lives. It WILL NOT require funding, nor will it have any significant effect on the administrative duties of an athletic program or school.

First, parents will need to read and sign a form before their child can participate in sports. Parents in Maine already get forms. Adding one more lifesaving form is reasonable. Furthermore, this form already exists in eleven states. I am providing you with a copy of Connecticut’s form today.

Second, coaches need to be trained about the warning signs. A training video exists and will be made available for free to the coaches in Maine. It was produced by Simon’s Fund, and is distributed by the National Federation of State High School Association. The video comes with a quiz and the quiz results are shared with the school’s athletic director. The video is ten minutes. This is a minimal amount of time to invest when the lives of children are at stake.

Third, students who pass out during or immediately after exercise will need to be cleared by a licensed medical professional before they can return. This provision is the ultimate in objectivity. The football player catches the ball or he doesn’t. The soccer player scores a goal or she doesn’t. The student passes out or he doesn’t. The coach can make this call. In fact, it could be the most important call she makes in her career.

That is why I believe in LD 1051. With the stroke of a pen, coaches and parents will know that sudden cardiac arrest is not just an adult thing. They will know that fainting isn’t normal and in contemplating a response, they will learn about the importance of AED devices and CPR.

The citizens of your state will get to learn from my misfortune. They will get to be smarter than I was twelve years ago. They will get the chance to save the life of a student.

When Simon died, we didn’t have a path forward. We just wanted to prevent another family from losing a child to a detectable and treatable heart condition. LD 1051 will bring us closer to that goal.

Thank you for the opportunity to speak today. I am happy to answer any questions.

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