Decker Sharp was born with congenital heart defects that left his heart filled with holes and the pulmonary valve too narrow.
NASHVILLE, Tenn. – A Tennessee family is fighting to get their 7-year-old son, born with a congenital heart defect, a medical device that would save his life.
At 8 months, Decker Sharp underwent his first open-heart surgery to repair ventricular septal defect and pulmonary stenosis, which meant his heart was filled with holes and the pulmonary valve was too narrow.
Still at age 3, he underwent another open-heart surgery because a mass had developed leading to his aorta which was affecting pressure and blood flow to his heart.
Looking at Decker, you wouldn’t know anything wrong, but there’s another problem lurking. Decker’s ascending aorta is essentially thinning and there’s pressure in his heart, the family said.
Decker is smart, athletic, funny and gives the best hugs, his mother told CBS News.
Decker also likes to play sports, which is common in his family. His father, Doug Sharp, was an American Olympian who won a bronze medal in bobsledding in 2002. Decker’s pediatric cardiologist allows the boy to play sports, but she told his parents they had to carry an external defibrillator automated, or AED, at its sporting events. The device is used to shock someone’s heart.
Cardiologist Dr. English Flack, who works at Monroe Carell Jr. Children’s Hospital in Vanderbilt, believes Decker may be at risk of sudden cardiac death during exercise due to his aortic stenosis, which is the result of his congenital heart defect. She told the family she feared Decker’s first heart attack could be serious – and the last because it could kill him.
But Anthem, Decker and his family’s insurance company, declined the doctor’s prescription for an AED.
In a statement to CBS News, Anthem said it decided after carefully reviewing the case, its medical policies and the medical literature regarding the use of AEDs for atrial septal defects.
“Existing medical evidence does not support that AEDs provide benefit to patients with atrial septal defects and, therefore, these devices are not covered by the family’s health plan,” the statement said.
CBS News’ David Begnaud noted that if Flack said Decker needed to have an AED implanted in his chest, which isn’t what she recommends at this point in his life, insurance would cover it. But his prescription for the parents to carry an AED to save their son’s life given his high risk of sudden cardiac arrest was denied.
An AED is not used to cure a heart defect, but it is used to save a person’s life if a person with a defect has a sudden cardiac arrest. This is why an AED is necessary. The device, which costs between $1,000 and $3,000, is also recommended by the American Medical Association and is found in almost every ambulance in America.
“We are disappointed with Anthem’s decision, but unfortunately not surprised,” Decker’s family said in a statement. “Our hope remains that this will start a conversation to set the parameters around when AED coverage is appropriate. health, not insurance companies.”
The family hopes their fight to get a life-saving medical device for their son underscores the need for doctors – not insurance companies – to make critical healthcare decisions.
“We understand the concern of Decker’s parents given his condition. Our clinical team has carefully reviewed and re-examined Decker’s case, our medical policies and the medical literature regarding the use of AEDs for atrial septal defects. Existing medical evidence does not confirm that AEDs provide benefit to patients with atrial septal defects, and therefore these devices are not covered by the family’s health insurance plan.
“The Anthem Blue Cross and Blue Shield appeal process provides the family with an additional review by an independent physician should they wish to exercise this option. This process provides further opportunities for new or additional facts and circumstances to be considered in coverage decision. Anthem’s coverage policies are based on evidence-based medicine using medical society position statements, peer-reviewed medical journals, and input from medical specialists across the country.”
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