Michigan Alliance Strives to Prevent Sudden Cardiac Death of the Young

Michigan Alliance Strives to Prevent Sudden Cardiac Death of the Young

By Kate Dernocoeur Mar 17, 2015

Within moments of winning a nail-biter of a game that qualified the Fennville (MI) Blackhawks for the 2011 regional basketball finals, the team’s star player, Wes Leonard, age 16, dropped to the court floor and died. In a similar tragedy in April 2000, standout athlete Kimberly Anne Gillary, age 15, died suddenly while contesting a water polo match for Troy Athens (MI) High School.

Autopsies of both Leonard and Gillary showed hypertrophic cardiomyopathy (HCM). According to the Kimberly Anne Gillary Foundation website, HCM “causes the lining of the heart muscle to thicken. People with HCM are more susceptible to cardiac arrest during strenuous physical activity.” Reports of these and others cases of sudden cardiac death of the young (SCDY) not related to drugs, trauma, suicide, homicide or long illness have prompted efforts in Michigan to measure and find ways to prevent further such devastating losses.

“When something happens with a young person, it raises red flags [for geneticists],” says Debra Duquette, MS, CGC, genomics coordinator for the Michigan Department of Community Health (MDCH). In a five-year cooperative agreement with the Centers of Disease Control beginning in 2003, Duquette and her team worked “to integrate genomics into as many chronic disease realms as we could—and we were one of the first to do anything about” SCDY, strictly defined as ages 1–39 for the study.

Analysis of mortality data by MDCH for 1999–2009 shows cardiomyopathy to be the most commonly reported underlying cause for SCDY victims aged 1–29. The research shows, according to Duquette, that SCDY “is a potentially preventable condition.”

“More than half of cardiac situations happening in the young are known to have a hereditary cause never known in the family before,” says Duquette. Even a single gene can trigger SCDY. This makes it possible to identify other people at risk. “We find that seven to nine other relatives will have that genetic situation,” she says. Now, preventative information can be provided to family members so they can take measures to protect themselves.

“When we saw there was enough evidence to say it was of public significance, and that SCDY was happening more than imagined,” says Duquette, “several people in the Michigan Department of Public Health asked me to continue this work.” A group of interested parties then created the Michigan Alliance for Prevention of Sudden Cardiac Death of the Young. It boasts approximately 60 individuals representing organizations ranging from professional medical societies, hospitals and health plans to industry, faith-based groups, academia and foundations.

Twenty-one prevention measures listed in the MDCH’s June 2012 report, “Too Young to Die: An Update on the Impact of Sudden Cardiac Death of the Young in Michigan, 1999–2011,” were grouped into five themes:

  • Provider education and public awareness of SCDY risk factors;
  • Enhanced pre-participation sports screening, physical examination and follow-up;
  • Public awareness of cardiac symptoms and training in the use of CPR and AED for coaches and the general public;
  • Creation and dissemination of emergency response protocols; and
  • Creation and dissemination of medical examiner protocols for possible SCDY cases.

Additionally, in February 2014, Michigan Governor Rick Snyder signed House Bill 4713. The new state law requires all Michigan schools to practice AED/CPR drills and have emergency sudden cardiac arrest response plans. Although not mandated, AEDs are increasingly available in many public places, including schools.

However, “the Gillary Foundation found that just because an AED is in a location, it doesn’t mean it’s ready to be used,” says Duquette. This fact helped generate the MI HEARTSafe Schools award program. A voluntary program, MI HEARTSafe Schools is designed to encourage schools to prepare and protect students, staff and visitors in the event of a cardiac emergency.

MI HEARTSafe schools must demonstrate existence of an emergency action plan and an in-house medical emergency response team; CPR and AED certification by certain staff; annual cardiac-emergency drills; and rapid access to an on-site AED. In addition, they must use the current Michigan High School Athletic Association (MSHAA) form. MHSAA was one of the first state athletic organizations to align with current national requirements for pre-participation sports screening. The first 40 schools to be awarded a MI HEARTSafe School designation were honored in May 2014.

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One initiative designed to help fund programs to prevent SCDY is the development of a specialty license plate. This could generate much-needed funding, and is just one of many ideas being considered by the alliance. “Many of our partners go way above and beyond,” says Duquette, who herself is now volunteering her time to the alliance since funding ended in 2013.


Kimberly Ann Gillary Foundation.


Wes Leonard Heart Foundation.

Michigan Dept of Community Health. Too Young to Die: An Update on the Impact of Sudden Cardiac Death of the Young in Michigan, 1999–2011. 

Kate Dernocoeur worked as a paramedic at the Denver Paramedic Division from 1979–1986, with time out to travel and write her book Streetsense. She wrote for the EMS industry for 25 years until 2003, returning in 2011 after a break. She is now a paid-on-call EMT-firefighter with the Ada (MI) Fire Department.

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