Pic credit: Joushua Lowry/ GoFundMe
A North Carolina family is preparing to take their 12-year-old son to Boston for a heart procedure despite an insurance denial that arrived just days before their scheduled trip to the hospital on October 19, ABC 13 reported.
The insurer reportedly called the procedure “medically unnecessary and experimental”. The boy, who has already undergone open-heart surgery, requires the stent before his arteries narrow further, the family said. They did not have time to appeal before the trip and plan to fly out anyway.
A tiredness that never went away
Rowan Lowry was 7 when doctors diagnosed him with Kawasaki disease (KD). It is a disease that can cause damage to the heart and blood vessels, according to the Centers for Disease Control and Prevention (CDC).
Mostly seen in children younger than 5, KD affects boys more often than girls. Its cause is unknown. In the US, the disease affects about 9 to 20 per 100,000 children under the age of 5, according to the agency.The first sign of KD is a fever that typically lasts for 5 days or longer. For Rowan, the initial sign was unusual tiredness, followed by a fever, his father, Joshua Lowry, previously told the outlet. Other symptoms include a rash; swelling and redness of the hands and feet; irritation and redness of the whites of the eyes; swollen lymph glands in the neck; and irritation and inflammation of the mouth, lips and throat.
The family says the diagnosis came late. By the time doctors treated the disease, Rowan had developed multiple aortic aneurysms, which are weak, bulging spots in the body’s main artery. The 12-year-old has already undergone open-heart surgery. “This has become a lifelong battle for him, and for our family it is heartbreaking and frightening. We are all scared,” his father previously wrote on a GoFundMe page set up to raise funds for his treatment.
Insurance denials can delay treatment
Rowan is scheduled to undergo a stent procedure on Monday, October 19, at Boston Children’s Hospital. Days before the trip, the family’s insurer sent a denial letter. According to his mother, Cheryl Presnall, the insurer said the procedure was “deemed medically unnecessary and experimental”.“I got the letter of denial yesterday from our insurance, and they said that the cause of denial was because it is deemed medically unnecessary and experimental,” Presnall told the outlet.
“Rowan is not a science experiment.”“They plan to put a stent in his left anterior descending artery in the hope of increasing his blood flow so he isn’t so tired all the time,” Rowan’s father explained on the fundraiser page.Without this procedure, Rowan’s condition would worsen. If the artery becomes too narrow for a stent, doctors may have to perform another open-heart surgery, his mother added. The family did not have time to appeal before the procedure date.
They are going anyway.“We’re getting on the plane. Because at the end of the day, we’re going to do whatever we have to do. We’re going to fight,” his mother said.Miranda Yaver, an assistant professor at the University of Pittsburgh who studies insurance denials, says patients whose illnesses do not fit the textbook presentation of a condition often struggle to get care approved. “Things that maybe are lifesaving are ultimately getting denied because it’s not a textbook presentation of the condition,” Yaver said.The professor also points to the psychological toll that denial and appeal processes take on families.