Every year we see it. A promising young athlete who appears to be the picture of health suddenly collapses from sudden cardiac arrest and dies from a heart ailment that was never detected. Many of these young athletes are dying from hypertrophic cardiomyopathy (HCM ).
You'd think that we could do something about HCM. I mean, we know what it is. We know how to test for it. We could detect it - really, we could. However, HCM falls into a strange risk category.
Rare condition
Sudden cardiac death from HCM affects 1 out of every 400,000 high school athletes in the United States each year. Put another way, approximately 50 teenagers a year will die from HCM.
We could screen for HCM with ECGs and echocardiograms (as is done in some other countries), but the cost would prohibitive. While some parent groups urge routine ECGs to detect for heart conditions such as HCM, the standard of care in this country is to take a detailed family history during the pre-participation physical evaluation, because it would require expenditures of hundreds of thousands of dollars to save the one person who might die in your community. Put another way, would your school district, youth program, or recreational league spend a six figure sum to prevent a death that will probably only occur once every 100 to 200 years?
Yes, it's true that every year about 50 teenagers will die from HCM. But we're a big country. Statistically, it will take 100 to 200 years before your city is impacted. So, I ask again: would your school district, youth program, or recreational league spend a six figure sum to prevent a death that they will probably only experience once very 100 to 200 years?
We do not have to be deterred by the cost, which is a good thing in these uncertain economic times. Quite frankly, we're not going to be able to spend our way out of this problem. No school, league, youth sports or high school governing body has the money to pay for HCM testing.
Plan of attack
We can attack the HCM problem through education and by forming bold alliances between schools, leagues and sports governing bodies with medical organizations. We can also attack it at the college level - where it can be written off as a research cost, complete with clinical studies of the scope of the problem and the impact of the testing.
This approach is already working. The Arizona TOPS program (Team of Physicians For Students) tests 2,000 8th through 12th grade students annually. The program is exactly what its name implies: a consortium of physicians providing the schools in Arizona the support to attack HCM through ECGs and Echocardopgrams.
Maryland has joined the small club of testers. They test a limited number of athletes for HCM at their state track meet.
The University of California San Francisco Medical Center is offering HCM testing in a pilot program which it rolled out in May, 2009. The UCSF Sports Medicine program, founded by Dr. Marc Safran and now run by Dr. Anthony Luke and his head trainer Jason Miyamoto, provides high level sports medical care to thousands of athletes in San Francisco's inner city public schools. They are teaming with the UCSF Cardiology Center to deliver the HCM testing.
The key to the programs in Arizona, Maryland, and San Francisco is educating decision makers about the problem and getting a medical community to buy in and donate their services. This is the only way to pull this off, absent a millionaire writing a big grant.
Of course, colleges are in a different boat. A college with a medical school can bring some resources to the table that high schools can only dream about. We've seen this model work at the University of Georgia where athletes are tested for HCM under the University's Heartbeat Program.
Gender and racial implications
The issue has some gender and racial implications, too. The average age of an athlete to die from sudden cardiac arrest is 17.5 years old. 90% of the victims are male and over 50% of the victims are African-Americans. This has led the Boston Scientific Group and the Black Coaches Association to target the problem, which may lead to more colleges testing for HCM.
We may not be able to buy our way into a solution for HCM, but with a little hard work, a lot of luck, and some good medical partners we can begin the fight.
Published May 20, 2013
