A Heart Broken, a Legacy Established

Taken from the March/April 2014 issue of the Women’s Health Activist Newsletter.

For some people, life progresses in a series of ebbs and flows, valleys and peaks. Others, like me, see life in terms of one sharp divide, one defining moment that separates then from now. My moment came the night before the start of my senior year of high school, when I was awakened by my phone ringing. I answered. “Rach?” my friend spoke quietly, “Jenny’s dead.”

Jennifer Lynn Snyder was my summer sister. We shared our summers together for many years, living and working in the Northwoods of Wisconsin at our overnight camp. Jenny loved life; she loved her friends. She was passionate about soccer and arguably even more so about the TV drama One Tree Hill. She was a strong ally and a beautiful person inside and out. Jenny was a force of nature.

Soon afterwards, I learned that Jenny had died of Sudden Cardiac Arrest (SCA). A science nerd to the core, I wondered why I had never heard of SCA before, so I started researching the condition. In some ways, I have coped with my loss by trying to understand what took my friend away from us.

I learned that, unlike a heart attack, which results from a blocked artery, SCA results from an electrical malfunction in the heart.1 SCA can attack perfectly healthy, athletic people, like Jenny, with no warning, and lead to death within minutes unless CPR is performed or an automated external defibrillator (AED) is used. The American Heart Association notes that: “Sudden cardiac arrest can occur after a heart attack, or during recovery.  Heart attacks increase the risk for sudden cardiac arrest. Most heart attacks do not lead to sudden cardiac arrest. But when sudden cardiac arrest occurs, heart attack is a common cause.”2

I was astounded to find out that, even though SCA carries a large burden of death, claiming at least 250,000 American lives each year,3 it is largely off the public’s radar, despite the fact that it affects people of all ages, and kills more Americans each year than breast cancer, lung cancer, stroke, and AIDS combined.4  While the National Institutes of Health (NIH) includes SCA as one issue to be addressed through the general funding allocated for heart disease, in reality, it is a distinct and critical issue that deserves more attention.

The most startling discovery I made was that SCA is deadliest among women: 120,000 women die each year from SCA, 39 percent more deaths than from breast cancer.5 African American women in particular are at higher risk; compared to women of other racial and ethnic groups, they have 60 percent increased chance of experiencing SCA.6

There has been a push to include women in heart disease discussions and research in recent years, in order to understand the gender-specific risks and indicators, and to develop more effective treatments for women. As this happens, the perception of heart disease as a “man’s disease” is slowly but surely coming undone. Yet, the notion that women are not affected by heart conditions run deep.

As with heart disease in general, so it goes with SCA: although women have a higher mortality rate, SCA is more prevalent in men, which has resulted in women being under-represented in research and treatment studies. (In fact, studies have demonstrated that SCA rates are actually increasing in women and decreasing in men.7,8)

Women are at higher risk for SCA death because their signs and symptoms often differ from men’s. The diagnosis more commonly associated with SCA, coronary artery disease, is significantly lower in women with SCA.9 Even when a woman has a diagnosis, however, research shows that physicians tend to treat coronary artery disease less aggressively in women than in men.10 Additionally, women are less likely than men to have irregular heart rhythms that predict potential SCA and therefore don’t receive implantable cardioverter defibrillators (ICDs) as often.11

This is particularly devastating, as ICD devices are 98 percent effective at preventing death from SCA in at-risk populations.12 Research also shows that survival is possible if treatment is administered in the minutes after SCA hits. Specifically, 90 percent of those who suffer from SCA can survive if treatment with an AED is administered quickly; further, those who receive an AED shock usually don’t face long-term complications.13 Unfortunately, women stricken by SCA are more likely to present pulse-less electrical activity or asystole compared with men, which makes successful resuscitation more difficult.14

The lack of knowledge on specific signs that predict SCA and treatment failure in women is startling, and something that future research must address. More attention should be given to women and African Americans, two groups for whom SCA is most deadly. My hope is that, if we can bring enough attention to risks and prevalence of SCA, more people will be saved.

For many, however, especially young women like Jenny, clear risk factors will not emerge until it is too late. What can we do for them? We need to raise awareness of this issue not only for the prevention of SCA in under-represented groups like women, but for the countless others who could be saved if we implemented simple education and policy initiatives. In 2008, Congress passed legislation designating October as “Sudden Cardiac Arrest Awareness Month,” in order to bring more attention to this issue. Organizations such as the Heart Rhythm Society are actively working to pass helpful legislation to increase the availability and clear labeling of AEDs and test new therapies and genetic screening (like the “Teaching Children to Save Lives Act and the Cardiomyopathy Health Education, Awareness, Risk Assessment, and Training in the Schools [HEARTS] Act of 2011,” which did not pass).

Jenny’s mom, Michele, has taken on leadership of a national organization, Parent Heart Watch, which trains people to use CPR and AEDs, places AEDs in community settings, and screens youth to prevent SCA. She also founded the Jennifer Lynn Snyder Teen Heart Foundation, dedicated to maintaining Jenny’s legacy by placing AEDs throughout her community. With the Internet and access to on-line resources, it is easier than ever to educate yourself and your family about SCA. It’s even possible to screen yourself using the SCA Risk Assessment tool developed by the Heart Rhythm Society (www.scarisk.com).

We know that Sudden Cardiac Arrest is a real, pressing issue in our society. We are also aware that a woman’s physiological experience of SCA is different from a man’s. It is critical that we continue searching for gender-specific answers to the questions we’re still unable to answer about SCA prevention and treatment, and maintain our commitment to education and policy agendas that can make a difference for SCA patients. Although it is too late for Jenny, we can save the lives of countless others in her memory, as her legacy. We can do something, and we must do something, so why not get started?


Rachel Ruderman is currently finishing her Master’s of Public Health degree at the University of Michigan School of Public Health. Rachel was a National Women’s Health Network intern in the summer of 2013.


The continued availability of external resources is outside of the NWHN’s control. If the link you are looking for is broken, contact us at [email protected] to request more current citation information.


References

1. American Heart Association (AHA), Heart Attack or Sudden Cardiac Arrest: How Are They Different?, Dallas: AHA, May 14 2013. Available at: http://www.heart.org/HEARTORG/Conditions/More/MyHeartandStrokeNews/Heart-Attack-or-Sudden-Cardiac-Arrest-How-Are-They-Different_UCM_440804_Article.jsp
2. American Heart Association (AHA), Heart Attack or Sudden Cardiac Arrest: How Are They Different?, Dallas: AHA, May 14 2013. Available at: http://www.heart.org/HEARTORG/Conditions/More/MyHeartandStrokeNews/Heart-Attack-or-Sudden-Cardiac-Arrest-How-Are-They-Different_UCM_440804_Article.jsp.
3. Mayo Clinic, Diseases and Conditions: Sudden death in young people — Heart problems often blamed, Rochester MN: Mayo Clinic, 2011. Available online at:
http://www.mayoclinic.org/diseases-conditions/sudden-cardiac-arrest/in-depth/sudden-death/art-20047571
4. Myerburg RJ, Castellanos A, “Cardiac arrest in sudden cardiac death,” In Braunwald E, Zipes DP, Libby P (eds.), Heart Disease: A Textbook of Cardiovascular Medicine, 6th ed., Philadelphia: WB Saunders; 2001, pp. 890-931.
5. Sudden Cardiac Arrest Coalition (SCAC), How SCA Impacts You, SCAC, 2013. Available online at; http://www.stopcardiacarrest.org/make-a-difference/how-sca-impacts-you.
6. Bertoia ML, Allison MA, Manson JE, et al., “Risk Factors for Sudden Cardiac Death in Post-Menopausal Women,” Journal of the American College of Cardiology 2012; 60(25): 2674-2682.
7. Albert CM, Chae CU, Grodstein F, et al., “Prospective Study of Sudden Cardiac Death Among Women in the United States,” Circulation 2003; 107: 2096-2101.
8. Chugh SS, Uy-Evando A, Teodorescu C, et al., “Women Have a Lower Prevalence of Structural Heart Disease as a Precursor to Sudden Cardiac Arrest,” Journal of the American College of Cardiology 2009; 54(22): 2006-2011.
9. Chiuve SE, Fung TT, Rexrode KM, et al., “Adherence to a Low-Risk, Healthy Lifestyle and Risk of Sudden Cardiac Death Among Women,” Journal of the American Medical Association 2011; 306: 62-69.
10. Chugh SS, Uy-Evando A, Teodorescu C, et al., “Women Have a Lower Prevalence of Structural Heart Disease as a Precursor to Sudden Cardiac Arrest,” Journal of the American College of Cardiology 2009; 54(22): 2006-2011.
11. Chugh SS, Uy-Evando A, Teodorescu C, et al., “Women Have a Lower Prevalence of Structural Heart Disease as a Precursor to Sudden Cardiac Arrest,” Journal of the American College of Cardiology 2009; 54(22): 2006-2011.
12. Sudden Cardiac Arrest Coalition (SCAC), How SCA Impacts You, SCAC, 2013. Available online at; http://www.stopcardiacarrest.org/make-a-difference/how-sca-impacts-you.
13. Sudden Cardiac Arrest Coalition (SCAC), How SCA Impacts You, SCAC, 2013. Available online at; http://www.stopcardiacarrest.org/make-a-difference/how-sca-impacts-you.
14. Chugh SS, Uy-Evando A, Teodorescu C, et al., “Women Have a Lower Prevalence of Structural Heart Disease as a Precursor to Sudden Cardiac Arrest,” Journal of the American College of Cardiology 2009; 54(22): 2006-2011.