Decker Sharp: Boy, 7, born with congenital heart defect DENIED life-saving health device by insurance company

Dr English Flack said that the 7-year-old needs the device as he may be at the risk of sudden cardiac death while exercising due to his aortic stenosis

Decker Sharp: Boy, 7, born with congenital heart defect DENIED life-saving health device by insurance company
An insurance company called Anthem has refused to cover the cost of an automated external defibrillator (R) for Decker Sharp (L) (Screenshots/CBS News)
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NASHVILLE, TENNESSEE: A Tennessee boy, 7, who was born with an atrioventricular septal defect and pulmonary stenosis, is being denied a device that could save his life as an insurance company refused to cover it. The company reportedly claimed that medical evidence did not support using the device. The child, Decker Sharp, has holes in his heart and his pulmonary valve is especially narrow.

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Decker's mother told CBS News that he is smart, athletic, funny, and gives the best hugs. He had his first open-heart surgery when he was eight months old. When he was three years old, he had another open-heart surgery after a mass developed leading to his aorta, and subsequently affected the pressure and blood flow to his heart. Decker's ascending aorta is thinning and there is pressure building in his heart, his family has said.

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Decker's father, Doug Sharp, was a US Olympian. He had won a bronze medal in bobsledding back in 2002. Sports run in Decker's family and the little boy loves it too. His pediatric cardiologist has allowed him to play but informed his parents that they must carry around an automated external defibrillator, or AED, at his sports events. The device is used to shock a person's heart. Cardiologist Dr English Flack, who works at Monroe Carell Jr Children's Hospital at Vanderbilt, said Decker may be at the risk of sudden cardiac death while exercising due to his aortic stenosis, a result of his heart defect.

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However, the insurance company, called Anthem, denied an AED despite the doctor's prescription. The company claimed they made the decision after reviewing the care closely. The company said that it reviewed its medical policies and the medical literature regarding the use of AEDs for atrial septal defects. "We understand Decker's parents' concern given his condition. Our clinical team has carefully reviewed and re-reviewed Decker's case, our medical policies, and the medical literature regarding use of AEDs for atrial septal defects. The existing medical evidence does not support that AEDs offer benefit to patients with atrial septal defects, and as a result, these devices are not a covered benefit under the family's health plan," the company said in a statement to CBS News.

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It added, "Anthem Blue Cross and Blue Shield's appeals process does afford the family additional review from an independent physician should they want to exercise that option. This process provides further opportunities for new or additional facts and circumstances to be considered in the coverage decision. Anthem's coverage policies are based on evidence-based medicine utilizing medical society position statements, leading peer-review medical journals, and input from physician specialists across the country."

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An AED cannot fix a heart defect but can save a person's life if they go into sudden cardiac arrest. The device costs between $1,000 and $3,000 and is recommended by the American Medical Association. It is found in nearly all ambulances in America.

"We are disappointed in 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 parameters around when AED coverage is appropriate. They certainly save lives. Moreover, we wholeheartedly believe doctors should lead healthcare decisions, not insurance companies."

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