John Hall is battling ALS, Lou Gehrig's Disease, and, as his condition deteriorates, he's relying more and more on round-the-clock medical care. Then after three years, Hall and his wife got word that their insurance wouldn't cover it any more.
Desperate for help, they reached out to the ABC11 I-Team Troubleshooter.
Unfortunately, there's no cure for ALS, and patients like John eventually need constant care. So when the Halls heard their insurance company was about to end around the clock care, they thought all was lost.
"It was unexpected, out of nowhere," said John's wife, Margaret Hall.
Margaret was stunned when her insurance company said it was ending 24/7 care for her husband. It's nursing care that Margaret says has been life saving.
"They give him his medications, his feedings," said Margaret. "They monitor ventilator and other machines. He has a cough assist machine to get things up. Watching him, he can actually with his eyes, you know kind of signal them he needs something. They've known him for so long. Most of our nurses have been here since day one. Most of them are like family."
United Healthcare has provided the around the clock nursing care for John in his Chapel Hill home since 2010 -- a year after he was diagnosed with ALS, and put on a ventilator. Margaret and her daughter, Kristin Hall, say there have been many close calls over the last three years.
"I don't think he'd be alive if it weren't for having these nurses," said Kristin.
"They know what they're doing," said Margaret.
"They're trained. They went to school for this," said Kristin.
However, just a few months ago, United Healthcare sent the Halls a letter saying John no longer needed the private nursing care because the family had been trained on how to care for him, and the requested care does not need to be done by a person with special training.
John's doctor at Duke couldn't believe it.
"It's not fair to give somebody this for 3 ½ years and despite the fact that they've gotten worse, then to just take it away," said Dr. Richard Bedlack. "Now he's completely paralyzed. He has no movement. So now he needs more care than ever, and now you have an insurance company saying you're not going to pay for it anymore, without any clear explanation as to why."
Bedlack, with Duke's ALS clinic, says he tried to get the decision overturned through United's appeal process and a peer-to-peer review.
"The reason that I heard from the medical director was they could not identify a skilled nursing need," said Bedlack. "I don't understand that. I mean, having to suction a person 15 or 20 times an hour -- that in itself seems to be a skilled nursing need."
Still, Bedlack says United denied the appeal.
"I think any reasonable person that looks at this case comes to a different conclusion than what the insurance company came to," he said.
"I fear that he's going to die on my watch," said Margaret.
"I'm scared you're going to die too trying," said Kristin.
Scared, but not ready to give up, Margaret reached out to me.
"Because I felt like you were the last hope," said Margaret.
I immediately reached out to United Healthcare. It took some time, but they agreed to take another look at John's case. They soon agreed to continue to cover John's round-the-clock care.
"It feels like the biggest burden has been lifted. If it wasn't for you guys, I don't know what would be going on right now. It wouldn't be good. You're a life saver." said Margaret.
United Healthcare provided the I-Team with this statement: "First and foremost, we'd like to extend our thoughts to the Hall family as they are dealing with an extremely challenging medical condition. Once we received the family's appeal on December 30, 2013, which included additional information, it was immediately reviewed by our clinical team. Based on the review, it was determined that coverage for Mr. Hall's nursing care should continue. "
The Halls certainly appreciate that change, and we do too.
John can't speak for himself anymore, but he and Margaret have been married 34 years. He just turned 59. He's a big UNC fan. Until he was diagnosed in 2009 and started declining in health, John loved to fish.