The Sudden Cardiac Arrest Coalition: Interview with Diane Canova, Co-Chair of the SCA Coalition

How did the SCA Coalition come about? How did you become involved as Co-Chair? A few years ago, a predecessor group called the Sudden Cardiac Arrest Alliance had been formed, although this group didn t have as much of a public presence. Their first tasks were to identify a legislative agenda, build a membership, and then begin advocating to advance that legislative agenda. I was hired during the interim period, at which time the Sudden Cardiac Arrest Association (SCAA) and the HRS, who had been the conveners of the Sudden Cardiac Arrest Alliance, decided to assess and revamp the format to create the new Sudden Cardiac Arrest Coalition. The SCAA expressed their interest in being a co-chair, since we already represent many of the SCA survivors and their families, friends, and medical professionals. We felt it was a logical and potentially effective partnership to join with the HRS, which as you know represents the medical professionals the electrophysiologists in particular who are most closely involved with these issues. Have any more groups joined the Coalition since the announcement? Since the announcement, we have seen a spike in interest about coalition membership and sudden cardiac arrest. In addition to our current 30 members, we are actively approaching potential members and welcome all national groups interested in reducing sudden cardiac arrest. Why was it important to include people from all across the health spectrum, not only physicians, but also patients and athletic trainers? We want our coalition to include all those organizations that have an interest and are engaged in various activities around SCA. Obviously the patients have a very personal stake in this issue, as well as the physicians who want to increase awareness to prevent additional deaths. Yet we are also close allies with trainers, CPR and AED providers, those advancing greater awareness in AED placement, and other medical and emergency service providers. Again, we feel it is important to include all who are advancing efforts and policies in the SCA arena; therefore, we hope to be an umbrella coalition in which all of those who are involved in this issue can come together. The SCA Coalition mentioned the introduction of a Omnibus bill to Congress. Describe what you hope the bill to include. How soon might we see passage of this bill? We are focused in three general areas. First, we would like to raise public awareness about SCA, so included in this would be to promote additional focus at the National Institutes of Health (NIH) and within the Centers for Disease Control, who can help use their collective power to focus on SCA and help us get our message out. Additionally, we hope to advance a congressional resolution calling to commemorate a Sudden Cardiac Arrest Awareness Week, again as a focal point for dividual activities as well as for those events the coalition will put together. The second prong of our approach is to advance additional research in this area, to help identify potential causes of SCA, find better screening tools for people at risk, and potentially devise a course of preventive treatment. The third approach that we are promoting is to ensure access to current medical technologies and therapies such as implantable defibrillators. Unfortunately, at the current time there is a lack of awareness of what an implantable defibrillator (ICD) is and its use could potentially help those at risk for SCA. Our information indicates that fewer than 35% of potential patients who could benefit from an ICD actually have one. In general, we want to raise awareness, promote focused research to help answer some of the unanswered questions about SCA, and also ensure that people have access to appropriate treatment. Describe the proposal of a National Sudden Cardiac Arrest Week. Are there proposed dates yet? What events does the SCA Coalition hope to take place during this awareness week? We are looking at the third week in September for the SCA Awareness Week. We felt that early fall might be a good time to initiate these awareness-raising activities, since young adults and children will be heading back in school at that time, and their parents will need to be aware of the challenges related to SCA before the start of the fall sports season. Therefore, we anticipate that individual members will schedule activities to call attention to SCA during this week. The SCA Coalition also anticipates participating in some awareness and education events in Washington, D.C., since that is the primary location to advance national policy. We haven t concluded on specific activities, but we would hope to engage with Congress and administration about some type of awareness-raising events. I think that other awareness-raising commemorations for example, the month of February is American Heart Month have done an excellent job in raising the visibility of various diseases and conditions; thus, we feel this could be a good rallying point to again not only coalesce around our Coalition s activities, but also encourage federal health agencies to join in our efforts and plan events as well. I was struck by the results of the national survey. Approximately how many people took part? The survey was comprised of 800 likely voters who participated in individual phone interviews. Please describe some of the misconceptions the general public had about identifying SCA. I believe a lot of the participants in our survey mirrored the lack of awareness in the general population, particularly related to distinguishing between a heart attack and SCA. Therefore, we were not really surprised at the results of this national survey we felt that it lended credence to our belief that awareness-raising needed to be a primary focus of our coalition. Along with the messages of raising awareness, we recognize the need to define SCA and focus on distinguishing between a heart attack, which affects primarily the muscles of the heart and the pumping capacity of the heart, versus sudden cardiac arrest, which affects the heart and body s electrical system. As a result, we are developing messages aimed at illustrating that point to the American public and the U.S. Congress. What achievements would you like to have in place before next year s HRS meeting? We are working with Congress to enlist their support in active leadership in enacting legislation. We recognize that the passage of legislation is certainly contingent on Congress completing all of the requisite requirements for how they consider legislation. Therefore, it is hard to predict what actually might be passed by next year, but we are hopeful that we will be able to begin having a positive impact and start some of the provisions of the Omnibus legislation that we are developing. For example, the national SCA Awareness Week would not incur any budget implications, so we anticipate having that enacted, since it would seem as though there would be widespread support on Capitol Hill. We also anticipate that we will work with the congressional appropriations committees to encourage them to include language in their legislation addressing the need for research focused in this area. We are hopeful that we can accomplish these tasks. Obviously such research can take many years, but we re hopeful of getting some commitments from Congress as well as the NIH acknowledging that this is an important area of research for which there needs to be additional attention and funding. We should be able to accomplish quite a bit in a year, but given the general public s understanding of SCA, we feel there is a similar lack of misunderstanding on Capitol Hill that much of our efforts will need to focus on and show why it is critical at this particular time for us to enact legislation and have a greater focus. Overall, there is a lot of ground work that needs to accompany or maybe precede the actual legislation. Is there a Web site to visit for more information about the SCA Coalition? Our Web site is www.stopcardiac Actually, the site is not yet live, although we anticipate getting the site up and running by mid-June. Could you also describe your involvement with the Sudden Cardiac Arrest Association? I am the Executive Director of the SCAA, which was formed two years ago to bring together SCA survivors, their families, ICD patients, and medical and emergency services professionals. The SCAA provides awareness-raising activities, engages in advocacy at the state and federal levels, and promotes greater access to AEDs, ICDs, and other lifesaving therapies and technologies. Is there anything else you d like to add? As we move forward, our Web site will be a valuable tool for people who are interested in learning more not only about what the SCA Coalition is doing, but also about up-to-date information about SCA.