Over the past few months many sports fans have read about hypertrophic cardiomyopathy and its relationship to the athletic community. Between the deaths of San Francisco 49’er Thomas Herrion and the contract negations of Eddy Curry with the Chicago Bulls hypertrophic cardiomyopathy has made its way to the forefront of the athletic community. The Hypertrophic Cardiomyopathy Association (HCMA) has seen a wide range of myths and partial truths about this complex condition and we must set the record straight on several items. Hypertrophic cardiomyopathy (HCM) is a genetic condition that can develop from birth or at anytime thereafter. You can not catch HCM; it is not caused by a virus, drug use or any other outside factor. HCM is not “athlete’s heart” although it is sometimes hard to tell the difference. One striking difference between HCM and “athletes heart” is the presents of symptoms. If you have “athletes heart” you have no symptoms, if you have HCM you may experience symptoms of palpations, racing heart (tachycardia), fainting, chest pain/discomfort, dizziness, lightheadedness and/or shortness of breath, in some cases of HCM the person has no symptoms at all.

Questions have been raised recently about the role of genetic testing for HCM. It is important to understand that there are 2 distinctive types of genetic testing and the implications are widely different. Some genetic tests are done for “prognostic” reasons this means in general that you are looking to see if there are any known gene mutations as a ‘screening’ tool. Others are done for “diagnostic” reasons, in these cases some evidence has pointed to a particular disease and in an effort to rule out that disease the genetic test can be done. To have a genetic test done for HCM a blood sample is sent to a lab and a very specific test is done to ONLY identify if one of the known HCM gene mutations is present. People undergoing HCM genetic tests are not screened for all other known genetic mutations, it is ONLY a screening for the known HCM genetic mutations. The HCMA believes in a person’s right to choose to participate in genetic testing. The HCMA also believes that teams have obligations to ensure the health and safety of its athletes.

Learn the facts about genetic testing:
What is the Genetic Information Nondiscrimination Act?
The Genetic Information Nondiscrimination Act (S. 306, H.R. 1227) is a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment. It was introduced to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics. It would also prevent health insurers from denying coverage or adjusting premiums based on an individual's predisposition to a genetic condition, and prohibit employers from discriminating on the basis of predictive genetic information. Additionally, such legislation would stop both employers and insurers from requiring applicants to submit to genetic tests, maintain strict use and disclosure requirements of genetic test information and impose penalties against employers and insurers who violate these provisions. This legislation does not cover diagnostic testing.
What is the status of the bill?
• March 10th: Legislation was introduced into the House (H.R. 1227) and was referred to Energy and Commerce, Education and Workforce, and Ways and Means Committee. A House Sign-on Letter was issued.
• February 17th: The Senate version of the act (S. 306) passed by unanimous vote (98-0).
o House bill detailed summary (from the Library of Congress' site Thomas.gov)
o Senate bill detailed summary and history (also from Thomas.gov)

The role of screening athletes for HCM and other heart conditions is one that should be reviewed by all sports entities on the professional, college and high school level. With better pre-participation screening questionnaires, more detailed family histories and base line EKG’s we can identify those athletes who should progress to echocardiograms to rule out serious heart problems. In the case of professional sports I would hope that the player associations would want to ensure the health and well being of there players and help them while they play and to live once the game is over.

HCM is a disease that is, unfortunately, not compatible with elite athletics. The draw of sports to a young athlete is strong. Due the power of this draw the seriousness of the condition may be blurred by the lime light. HCM is a disease that is compatible with long life with proper treatment. At what price are athletes willing to pay to play? At what cost to the families, fans and coaches who stand courtside – or in the locker room and watch CPR and defibrillation performed on a ‘healthy young person”?

The two cases about HCM that have taken the attention of the media are not the only athletes to be affected by HCM this year. Between January 20, 2005 and July 1, 2005 - -3 NCAA athletes have died from HCM and hundreds of young people and children in this country have lost their lives to this disease. 1 in 500 people have HCM while hundreds may die undiagnosed thousands live normal lives with this disease everyday. To learn more about HCM visit www.4hcm.org and let the beat go on!

 Antwoine Key, 23, died January 2005 - Eastern Connecticut State University – Basketball
 Daniel Rumph, 21, died May 2005 – Western Kentucky University – Basketball
 George Jefferson, 20, died June 2005 – St. Peters College, NJ - Basketball