DEBATE – A Recipe For Procrastination

For Every Day That Passes - 20 Young Americans Will Pass As Well

I always find it amazing how people respond to me when I’m asked what it is that I do.   I get amazing feedback, especially from parents; how it’s very noble, right down to it’s a “no brainer”.  Then comes the big “BUT” called the debate of whether to screen or not to screen our youth for cardiac arrhythmias through electrocardiogram (EKG/ ECG).

I happened to tune into a radio show yesterday morning that was discussing preventive heart screening.  It stemmed from an article that was published in the Boston Globe that morning.  Please take the time to read it.

http://www.boston.com/news/health/articles/2010/03/02/heart_testing_back_in_spotlight/

Because I am intimately involved and knowledgeable about this insidious disease, I found it discouraging, let’s say, that we are even still debating this issue when there are programs out there, similar in scope to ours, but not quite so expansive as ours, that have ended the debate and found a solution to the problem and are doing something about it, while others feel quite comfortable sitting back continuing the debate and using a “rare” occurrence and cost-effective argument to base their comments on.  Let me remind everyone that 7,000 children are dying each year between the ages of 6-18.  That’s 20 children per day that are loved by their parents, families and communities and have meaning in this world; far from “rare” in my estimate with a price tag held over their heads because some are either not fully informed or are just not yet informed.  I understand that when it comes to the athletic child, people may be a bit apprehensive because, for some, sports it a ticket to college.

Our program is a voluntary, opt-in program.  In the areas in which we have hospital relationships, there are expedited appointments for those who test abnormal to quickly exclude the false positives and then quickly provide follow-up care for those who test as a true positive.  There are 300-400 public deaths each year; those more likely sports related.  That leaves 6,600 other children, sedentary children, vulnerable to this disease state.

What is a child’s life worth?  Easy answer for me;  INVALUABLE.  To others who are not yet informed or not fully informed or have no solutions to the problem, or don’t feel that 7,000 children dying every year is a problem, they use the good old “rare” occurrence rate and cost-effective argument.  Another article that came out in the New York Times yesterday addresses the cost-effective argument.

http://www.nytimes.com/2010/03/02/health/02heart.html?ref=health

I am not advocating for regulation or the mandating of preventive heart screening at this moment in time.  I agree with some opponents that it would overwhelm an already overwhelmed health care delivery system.  What I do, and will continue to do, is advocate a solution that is doable in the immediacy; a voluntary, opt-in, outside-the-traditional setting, alternatively funded, bringing preventive heart screening, including an EKG/ ECG, to the population.  We are doing it and it is working.

It just so happened, a physician called in to this radio show yesterday, not sure what specialty he is in, suggesting that “children dying at an alarming rate is “bunk”.  Apparently he doesn’t feel that the Heart Rhythm Society’s number of 7,000 is alarming.  That’s offensive to me.  It’s not 700, it’s not 7, it’s 7,000!  And if it were only ONE, I still find his word “bunk” offensive.  We are talking about children’s lives.  Even though he is a physician, I would categorize him as one of the “not yet informed” or “not fully informed”.  Some like to say that advocates, like myself, and programs out there providing preventive heart screening are promoting fear.  It is physicians like him who put “fear” into the minds of those who otherwise would consider preventive heart screening a “no brainer”; fear that they may never play sports again if they have this test, fear that a false-positive can cause chaos and stress and possibly bench an athlete from his sport for a brief period of time.  Isn’t it better than an athlete or child dying?  It seems more and more articles I read that oppose preventive heart screening are more about the sport than the child.  Does any of that sound right? 

Everyone, certainly, is entitled to their opinion.  I, having experienced the loss of a child, use this blog to express mine.  Preventive heart screening, including an EKG/ ECG, can and does saves lives.  It offers a LIFE sentence to a child who tests positive when there may have been a death sentence pending.   It offers the “FREEDOM OF CHOICE” for parents to receive a life-saving service that is not presently available to them in the standard of care in America.  This is an asymptomatic disease state.  In over 80% of the cases, the first symptom is death.  And because this disease state is genetic and hereditary, it may just save the life of another family member of the child who received the screening.  It’s a simple and easy test.

I know that no test is 100% positive.  Other screening tests, like mammograms, are not 100% but they are a part of the standard of care in America to avoid death from breast cancer.  Cardiac arrhythmias are the leading “silent killers” of our children.  It takes the life of more children than all the other childhood diseases combined.  Don’t our children deserve something?  Ask any parent who has lost a child from this, if they knew then what they know now, would they have taken this opportunity?  They now are the ones left behind with the insurmountable grief and pain that comes with the loss of a child and they are also the “Crusaders” who are out there fighting for everyone else’s children.

I’m done with the debate.  I’m moving forward.  I hope and pray that if a preventive heart screening opportunity comes to your community, that you take full advantage of it; embrace and support it.  There is a child’s life out there that depends on it!