Introducing the SCA Foundation and National SCA Survivor Registry™

Jeremy Whitehead, Staff Member Sudden Cardiac Arrest Foundation & Director of the National SCA Survivor Registry
Jeremy Whitehead, Staff Member Sudden Cardiac Arrest Foundation & Director of the National SCA Survivor Registry
In this article we learn about the Sudden Cardiac Arrest Foundation, which was formed in January 2006. This important organization, based in Pittsburgh, Pennsylvania, established the national SCA Survivor Registry™. Too many innocent people suffer sudden cardiac arrest (SCA). Without any warning, their hearts stop pumping blood and they collapse. They are clinically dead. The lucky ones survive, thanks to immediate intervention by bystanders and other rescuers who call 9-1-1, provide cardiopulmonary resuscitation (CPR), and use automated external defibrillators (AEDs) to restore a normal heartbeat. Most SCA victims (19 out of 20) do not survive. Why is survival such a rare thing? The culprit, in large part, is a lack of awareness and basic training on the part of the public and even some health professionals. Fortunately, the Sudden Cardiac Arrest Foundation (SCA Foundation) is making an effort to radically change this dynamic. We envision a day when survival is the rule, not the exception. The SCA Foundation is a national 501(c)3 nonprofit organization focused on preventing death and disability from sudden cardiac arrest. Our mission is “To raise awareness about sudden cardiac arrest and support programs that give ordinary people the power to save lives.” Mary Newman is President of the SCA Foundation, and Bobby V. Khan, MD, PhD, is chairman of the Board of Directors. Leveraging the expertise and qualifications of our advisory council, the Sudden Cardiac Arrest Foundation provides resources that emphasize the importance of evaluation (early and accurate diagnosis), CPR, use of AEDs, wearable defibrillators, use of ICD technology for primary and secondary prevention, drug therapy, hypothermia, and other methods used to improve survival from SCA and post resuscitation quality of life. In the role of information clearinghouse, the SCA Foundation also announced the formation of a National SCA Survivor Registry™ in February 2007. The purpose of this registry is to identify people who have survived sudden cardiac arrest and who would like to help others survive. By collecting information such as the location of arrest, types of intervention and outcomes, the SCA Foundation hopes to identify variables and trends related to SCA survival and the return to pre-arrest levels of functioning. In addition, survivors who join the registry can participate in survey research and efforts to increase public awareness, such as media interviews and community outreach, as well as connect to other survivors in their locality or fields of interest. Maybe it should not be a surprise, but I am amazed how little the general public knows about SCA, and yet the information is freely available. So many of the survivors I have interviewed for the SCA Survivor Registry™ were not aware of what a cardiac arrest actually means, nor that it is not the same as a heart attack. Each one does now. But what of the other 19 who did not survive? Would it have made a difference if those nearby knew more? We think so, because every survivor I’ve interviewed had three things in common: their collapse was witnessed, those nearby called 9-1-1 and started CPR, and the victim received restorative shocks from a defibrillator within 10 minutes. In most cases, all this happened before they reached the hospital. Some, although few, were even saved before the EMTs arrived. It is astounding that the public does not seem to be aware of SCA, despite the huge number of fatal occurrences. Too often, common misperceptions prevail. The media often reports that a person died from “a massive heart attack,” reinforcing the mistaken notion that little could have been done to save them. In reality, these sudden deaths usually represent SCA, a condition that can be treated successfully through early intervention with CPR and defibrillators. A recent case in point is NBC journalist, Tim Russert. The tragic loss of this high profile media figure on June 13, 2008 occurred the week after the first-ever National CPR/AED Awareness Week. Unlike many other medical conditions, survival from SCA depends on immediate intervention by bystanders, typically laypersons with no medical training who lack an understanding about their vital role in determining whether SCA victims live or die. Consequently, only seven percent of SCA victims survive in the U.S., when as many as one in five could survive if they were treated in a timely, effective manner. If the survival rate was increased to 20 percent, approximately 50,000 extra lives could be saved each year. Therefore, there was clearly a need for an organization such as the SCA Foundation to provide easily accessible, objective, and comprehensive information on the prevention of death and disability due to SCA. While various other organizations address specific conditions that cause SCA or the specific populations affected by SCA — and some organizations include SCA as one of many topics they address, in addition to a number of helpful industry resources — there was no one central repository of current and reliable information on SCA that addressed the condition of SCA before, during and after its occurrence. Furthermore, there was no central virtual meeting place for “any time, any place” exchange of information, ideas, experiences and guidance related to SCA. I am proud to help the SCA Foundation turn this tide. Many of us know what to do and what NOT to do if someone is choking, drowning, or even electrocuted. However, we now want them to know how to save a life, how to recognize SCA, be willing and able to perform CPR and use an AED. The SCA Foundation has set an ambitious goal. By 2012, 100 million Americans will be aware of sudden cardiac arrest and 10 million will be prepared to save a life. By increasing public awareness about SCA, we can empower individuals to act effectively in the event of sudden cardiac emergencies they encounter. We will educate laypersons and community health advocates about best practices for addressing SCA at home, at school, at work and elsewhere in the community, and facilitate grassroots collaboration and action. An interesting outcome of my interviews with survivors has been the realization that psychological support is most important to recovery. Many of them report that their hospitals and cardiologists do not have support groups, or that they are located too far away for effective involvement. We welcome all survivors, and encourage them to share their stories and communicate with each other through discussion forums and directly via our online presence. By fostering dialogue between survivors, we aim to build a community that can help itself and promote awareness to a wider audience. Some recent analysis of the SCA Survivor Registry™ has revealed a few surprises. For example, more young people are affected by SCA than generally is acknowledged; there is a need to increase awareness in patient populations about the importance of ICD therapy; and more communities should consider using state-of-the-art therapies, like mild therapeutic hypothermia. Reviewing our first year of data indicates the following demographics: two-thirds of registrants are male, and one-third are 40 years old or younger. Three out of four respondents report having no prior history of a heart condition and underwent ICD therapy, and one-fifth reported having undergone mild therapeutic hypothermia. Most survivors reported they regained their previous level of functioning, but one-fifth has not. This is a serious issue that supports the use of devices such as the ResQpod® to ensure adequate blood flow to the brain during CPR, and post-resuscitation techniques to minimize brain injury, such as induced hypothermia. The SCA Foundation also distributes via email a newsletter that is specifically focused on sudden cardiac arrest. Anyone can sign up to receive it. We have a tremendous number of readers “clicking through” to the articles, so we feel this is worthwhile. We also have some new mechanisms in store to increase the interactivity within our community. We are planning a campaign to encourage more people to learn how to save a life. It is inspired by the sudden death of Tim Russert, and is based on the simple catch phrase “I’m learning for…™”; we ask them to consider “Who are you learning for?” It could be someone you love, or you might learn for Tim, since the legacy of his loss seems to be linked to so many people asking if they too are vulnerable. We encourage everyone to learn CPR and how to use an AED, and now is an appropriate time, since the month of October has been nominated as the National Sudden Cardiac Arrest Awareness Month. Similar to the National CPR/AED Awareness Week, in which Congress set aside the first week of June to spotlight how lives can be saved if more Americans know CPR and how to use an AED, this new declaration seeks to educate people about SCA and to raise awareness about the risks, warning signs, and the need to respond in a timely manner. Congress also acknowledges the critical importance of SCA awareness in improving national cardiovascular health; they are calling upon the people of the United States to observe the month with appropriate programs and activities. In addition, we look forward to launching the “You Can Save a Life™ National SCA Awareness Campaign for Schools” initiative, which will begin in late 2008. The goals of this campaign are to raise awareness about the prevention and treatment of SCA and motivate those to establish screening programs and CPR-AED training and response programs in elementary and secondary schools. The SCA Foundation has also set some challenging milestones for achievement: •Increase the rate of bystander CPR from 27%* to 40% within five years; •Increase the use of AEDs outside the hospital from 2%* to 10% within five years; •Increase the use of ICDs for primary and secondary prevention in at-risk patients; •Increase the use of other effective therapies such as impedance threshold devices and mild therapeutic hypothermia; •Double the rate of survival to hospital discharge from 6.4%* to 13% within 10 years. Hopefully, we will not be alone in achieving these goals. For more information, please visit: www.sca-aware.org *Heart Disease and Stroke Statistics — 2008 Update. Circulation 2008;117e25-e146.