Decker Sharp was born with a congenital heart defect that left his heart full of holes and the pulmonary valve too narrow.
NASHVILLE, TN – A family from Tennessee is fighting to get their 7-year-old son, who was born with congenital heart defects, a lifesaving medical device.
at the age of 8 months, Decker Sharp He had his first open heart surgery to fix an atrioventricular septal defect and pulmonary stenosis, which meant his heart was full of holes and the pulmonary valve was too narrow.
Back at the age of three, he had another open heart operation because a block had developed leading into his aorta and it was affecting the pressure and blood flow to his heart.
Looking at Decker, one wouldn’t know anything was wrong, but there’s another underlying problem. The family said Decker’s ascending aorta is essentially thin and there is increased pressure in his heart.
His mom said Decker is smart, athletic, funny and gives the best hugs CBS News.
Decker also loves to play sports, which runs in his family. His father, Doug Sharp, was an American Olympian who won a bronze medal in figure skating in 2002. Decker’s pediatric cardiologist allows the boy to play sports, but she tells his parents they need to carry an automated external defibrillator, or AED, at his sporting events. The device is used to shock someone’s heart.
Cardiologist Dr. English Flack, who works at Monroe Carrell Jr. Children’s Hospital in Vanderbilt, believes Decker may be at risk of sudden cardiac death during exercise due to aortic stenosis, which results from a congenital heart defect. She told the family she feared it would be Big Decker’s first heart attack – and the last because it could kill him.
But Anthem, the insurance company for Decker and his family, refused the doctor’s prescription for an AED.
In a statement to CBS NewsAnthem said she decided after carefully reviewing the condition, its medical policies and the medical literature regarding the use of epilepsy for atrial septal defects.
“Current medical evidence does not support that epilepsy offers a benefit to patients with atrial septal defects, and as a result, these devices are not a covered benefit under the Family Health Plan,” the statement read.
CBS News’ David Bignaud noted that if Flack said Decker needed an AED implant in his chest, which she wouldn’t recommend at this point in his life, insurance would cover him. But her prescription for the parents to carry an AED to save their son’s life was denied due to the high risk of sudden cardiac arrest.
The AED is not used to repair a heart defect, but it is used to save someone’s life if someone with the defect goes into sudden cardiac arrest. That’s why an AED is needed. The device, which costs between $1,000 and $3,000, is also recommended by the American Medical Association and can be found in nearly every ambulance in America.
“We are disappointed with Anthem’s decision but unfortunately not surprised,” the Decker family said in a statement. “We still hope this will start a conversation to set standards when AED coverage is appropriate. It certainly saves lives. Furthermore, we strongly believe that clinicians should drive healthcare decisions, not insurance companies.”
The family hopes that their battle to get a medical device to save their son highlights the need for doctors – not insurance companies – to make critical healthcare decisions.
“We understand Decker’s parents’ concern given his condition. Our clinical team has reviewed and re-reviewed Decker’s condition, our medical policies, and the medical literature regarding the use of epilepsy for atrial septal defects. Current medical evidence does not support that epilepsy offers a benefit for patients with atrial septal defects, and as a result Therefore, these devices are not a covered feature under the Family Health Plan.
“The appeal process at Anthem Blue Cross and Blue Shield provides the family with additional review from an independent physician if they want to exercise this option. This process provides additional opportunities for new or additional facts and circumstances to be considered in a coverage decision. Anthem’s coverage policies are based on evidence-based medicine. Using the position data of the medical community, leading peer-reviewed medical journals and input from medical professionals across the country.”