All About the Cardiac Arrhythmia Syndromes Foundation

Interview by Jodie Elrod
Interview by Jodie Elrod
In this interview with Jayne Vining, she tells us about the Cardiac Arrhythmia Syndromes Foundation, which is dedicated to the prevention of sudden cardiac arrest. Tell us about the Cardiac Arrhythmia Syndromes Foundation. When was it formed? The Cardiac Arrhythmia Syndromes Foundation, Inc. (CASF) was formed in July 2008 in order to promote public health through education along with advocating for, and facilitating, large-scale preventive heart screening. CASF’s mission is to promote awareness of the risk of sudden cardiac arrest (SCA) and to reduce its incidences by providing opportunities for adolescent athletes and young Americans to be screened. We aim to accomplish this mission by collaborating with healthcare institutions and schools to provide education and on-site, large-scale preventive heart screening. Why was the CASF created? It was created to help minimize the number of lives lost and ease its accompanying grief. When undetected, the first symptom of these silent, random killers is death in many cases. The key to prevention is an electrocardiogram (ECG), which is the best initial marker for many cardiac abnormalities. Many carriers of cardiac arrhythmia syndromes (CAS) are genetically predisposed to their conditions. When one member of a family is screened and found to have a pre-existing condition, other family members may likely be predisposed to the same condition. They now, too, can be proactively tested and treated. Most congenital heart defects and cardiac arrhythmias that cause sudden deaths are not detectable during “traditional” physical exams. Therefore, providing effective, cost-efficient, large-scale screening events that are focused on children could save thousands of lives a year. What are the goals of the CASF? Our goals include: • To prevent SCA caused by cardiac arrhythmias and other detectable cardiac abnormalities (CA) of the adolescent athlete and young American population, among others, through heart screening with an electrocardiogram. • To inform those not yet informed of the pervasiveness and insidiousness of SCA by CAS and other detectable cardiac abnormalities. • To create awareness; in order to save the most lives, we need proactive prevention (heart screening) in conjunction with reactive preparedness (AED and CPR training). What services do you offer? We offer a preventive heart screening program in accordance with the Lausanne Recommendations, with the exception of the physical examination. We feel this is better left to the individual’s primary care physician; we want to complement their physical examination, not compete with it. CASF’s screening modality for ages 6-25 is: • Personal and family cardio history • Blood pressure • Body mass index (BMI) • Electrocardiogram (read by an age-appropriate, board-certified cardiologist) • Results to client within 10 days • Secure online access to screening history (via user name and password) In addition, CASF has an adult modality (also for the obese child) that includes all of the above-mentioned steps, as well as testing for: • Cholesterol • Glucose • Triglycosides (jurisdiction sensitive) • C-Reactive Proteins (jurisdiction sensitive) Tell us about CASF’s mobile heart screening services. Convenient, anytime, online pre-registration is offered, which makes it easy to schedule an appointment, enter demographics, complete heart health histories and sign consent forms. At this time the client also creates their username and password. The website also allows for online donations to be made. At check-in, there is no filling out forms since the person is already registered. They first get a quick blood pressure reading and then step into a private screening room, where an ECG technician takes a ‘snapshot’ of the heart’s electrical activity. Most people are screened in 10 minutes, and a results letter is mailed within 10 days. The results will either indicate no current ECG evidence of heart problems or may indicate a need to consult a doctor for further follow-up and guidance. Please note that while CASF is a facilitator of screening events; the event itself is executed by HeartScreen America, Inc. (HSA) (www.HeartScreenAmerica.com). Who is eligible for screening? CASF’s primary focus is the adolescent athlete and young American population, ages 6 to 18, within the 1st through 12th grade. However, we also advocate screening for school staff and faculty as well as for parents and siblings. How many screenings are done each year/month? Are screenings from the CASF currently available only in Massachusetts, or across the U.S.? CASF has facilitated approximately 1,000 screenings since its inception in July 2008. CASF’s sub-contractor, HSA, has done many thousands of screenings. CASF’s screenings are available all across America. Are these offered at a discount to patients? How is funding possible for these screenings? Screenings are heavily subsidized by our sponsors and significantly discounted by our subcontractor, HeartScreen America, Inc. Our screenings retail for $49.00 without cholesterol and glucose, $69.00 with or $24.95 for just cholesterol and glucose. CASF has various funding sources, including state, federal, individual, corporate and founder. Please note that neither CASF, nor does our subcontractor, call people who participate in our screenings, patients. We refer to all as clients. We are the facilitators of screening events, and our subcontractor is a screening company only. Neither entity practices medicine; therefore, we do not diagnose, treat or prescribe. Since the start of your screenings, approximately how many people have been detected with arrhythmias? We don’t report on disease states; we only report on screening results (i.e., normal, borderline, abnormal, and abnormal urgent). It seems that cardiac screening for athletes and adolescents is still hard to come by. That is very true. Unfortunately, we as a nation, including many in the medical community, are still “not yet fully informed” of the pervasiveness and insidiousness of SCA by CAS of the adolescent athlete and young American population. Why do you think we haven’t seen swifter action for the creation of a national pre-participation ECG screening in the U.S.? The answer to that is cost and utilization of resources. If we as a country were going to execute best science, it would entail screening all students in year one and from then on, all 1st, 7th, 9th and 11th grade students. The cost for this in the traditional healthcare setting would further exacerbate the spiraling healthcare costs in America. Also, when you consider introducing into the healthcare delivery system millions upon millions of ECGs and the workups that would follow, the potential to break an already over-taxed delivery system is real. That’s why CASF’s model of “voluntary, opt-in, outside the traditional setting and privately paid” is the answer in the present. Our solution is in harmony and synergy with the American Heart Association’s recommendations, as contained in their published scientific statement on nutrition, physical activity, and metabolism: “However, this view represents a perspective on large-scale national screening programs and is not intended to actively discourage individual local efforts.”1 It continues, “On the other hand, the panel does not arbitrarily oppose volunteer-based athlete screening programs with non-invasive testing performed selectively on a smaller scale in local communities if well designed and prudently implemented.”1 Our position is to give parents/guardians at least the opportunity to access a service that is otherwise unavailable to the asymptomatic child, free or at an affordable price with no barriers to access. We bring the service to them, and no child will ever be denied access predicated upon one’s ability or inability to pay. All children who receive a school waiver of fees (i.e., bus, lunch, sports, etc.) will be screened for free. Why are more programs like this needed? What can be done to encourage necessary heart screenings and prevent sudden cardiac death? One only has to look at the demographics, approximately 25 million children in the 6 to 25 age range. All should receive an ECG at least to establish a baseline, then every two years after puberty until age 35. So you can see the population is even more expansive than most imagine. There is room for all. We welcome our brothers, sisters, mothers, fathers and friends in arms. There is much to be done, and together we can make a difference! What advancements would you like to see made in public cardiac screening in the future? What excites us is the production of American-based science. We must add to our national literature. Only then will this issue be taken seriously by all. We need everybody’s help in informing those not yet informed; our goal is that by 2012, all will be informed about SCA by CAS and CA of the adolescent athlete and young American population. Do you think we’ll see a national heart screening program in the U.S.? Yes, we think the progression will be much like mammograms, whose acceptance as a national practice was a long time coming but is now a part of the “standard of care.” We will, in time, 5 to 10 years, hopefully see a similar progression of acceptance of the benefits of preventive heart screening. Is CASF membership available? Yes, all are welcome. We need everybody’s help. CASF is a very young foundation, founded out of love and concern for others. We are not professional foundation managers but know we need all of the professional help we can get. Volunteerism is always very much appreciated and needed. At this stage in our development, we are focusing our financial contributions on screenings, not personnel. Is it possible for electrophysiology professionals to get involved with the CASF? Yes, that would be an answer to one of our many prayers. Presently we have been blessed to be associated with David Spodick, MD, FACC, MACP, FCCP, FAHA, who sits on the Scientific Advisory Board in the electrophysiology space of our subcontractor, HeartScreen America. Dr. Spodick is presently at Saint Vincent Hospital in Worcester, Massachusetts. Tell us about how cardiac arrhythmia has impacted your life. I lost my beloved infant son, Marc, to a congenital heart defect. Additionally, my husband is also aware of the pain in losing a loved one in a split second, having lost two wives to automobile accidents. We know all too well what loss and grief is all about. To prevent even one person from suffering such profound sadness and despair is worth all of our time, efforts and monies. Is there anything you’d like to add? We at CASF can’t say enough about the good works being done by volunteer-based organizations. One only needs to look at Parent Heart Watch (www.parentheartwatch.org), led by Martha Lopez Anderson; Saving Young Hearts (SYH) (www.savingyounghearts.org); Run for Sarah: the Sarah Friend Heart Foundation, led by Laura Friend, (www.runforsarah.com); Kids Endangered Now Heart Foundation, led by Linette Derminer (www.kenheart.org); and Take It To Heart™, by Rhonda Foster (www.takeittoheart.org), to name just a few. I would also like to mention some great work being done in the volunteer-based screening model by Seaneen and Jeff Greaves of A Heart for Sports (www.aheartforsports.org), one of the oldest and longest-running foundations in this area, and also Sharon Bates of The Anthony Bates Foundation (www.anthonybates.org). Last but certainly not least, we would like to give our biggest “Thank You” to the Heart Rhythm Society (www.hrsonline.org). Without the literature and information that they distribute and teach, we would not be where we are today. Thank you HRS! For more information, please visit: www.SafeBeat.org