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3 Patients, All Fighting To Stay Alive, Have Also Fought To Keep Intensive Nursing Care After Insurance Companies Took It Away

GRAND RIDGE, Ill. (CBS) -- Three patients, decades apart on their journeys, are fighting to stay alive and are also battling to keep their intensive nursing care – after their insurance companies decided to take it away.

CBS 2 Investigator Megan Hickey has been pushing for answers and is getting some results.

"My family is the world, and means the world to me," said Jeff Lane of Grand Ridge, LaSalle County, who speaks through a computer.

Lane's world is his wife and his three kids. He was diagnosed with amyotrophic lateral sclerosis, or ALS – also called Lou Gehrig's disease – in 2002, just three years after marrying his college sweetheart, Debbie.

The disease has progressively taken over his body. He lost his voice in 2004, and he lost his ability to breathe by himself in 2007.

"It was either you're going to do this or he's not going to be here much longer," Debbie siad.

But Lane never lost his sense of humor.

"Embrace the suck," Jeff Lane said.

"Joking is definitely his thing," Debbie Lane said.

Since he went on a ventilator, Jeff Lane's insurance company has paid for private skilled nursing care. It was a blessing to his wife Debbie, who works full time and takes care of their three kids.

She said if she left her husband alone, "he would probably die."

So you can imagine Debbie Lane's panic this summer when she opened a letter from their insurer, Aetna, saying Jeff Lane's nursing was being cut – completely.

"Why now? Why us?" Debbie Lane said. "Thirteen years later and now all of the sudden you don't want to pay for his care?"

"Are you kidding?" Jeff Lane said.

Denial records sent to the Lanes state that while Jeff's condition remains critical, the insurer concluded it has "stabilized." This means he doesn't need a skilled nurse, according to their clinical policy guidelines.

This determination was made without an evaluation, just based on his clinical records. And it's news to the Lanes, since ALS is, by medical definition, a "progressive disease."

"He has ALS," Debbie Lane said. "How can you say he's stable?"

The Chengs can sympathize – deeply. Their son, Leo, was born dangerously premature.

"Only a pound and a half," said his mom, Jing Cheng.

Now at 2 years old, Leo's little lungs also rely on a ventilator. But that hasn't stopped him from trying to do all the things that healthy little boys do.

But a misstep for Leo, blocked airway, or a snagged breathing tube could easily be fatal.

"It's something that keeps me up at night and we worry about all the time," Jing Cheng said.

Up until now, Leo has also been under the watchful eye of a private skilled nurse. But the family's insurer, Blue Cross Blue Shield of Illinois, informed them over the summer that those hours would be cut.

"It prevents an emergency from happening," Cheng said. "It prevents Leo from having to Lose oxygen and have to get revived by paramedics and our home and abroad to the hospital and have a log on still stay. It prevents us that heartbreak."

And it's the heart break of losing Leo that the Chengs fear the most.

The Chengs had their first appeal denied. They're still in the middle of their second.

The Illinois Department of Insurance said they don't have the authority to comment on medical judgment in cases like these. But if families believe an insurance company is not honoring their policy, the department said they should file a complaint with the state.

Cheng said that's the next step.

And it's one of the steps, in addition to a 2013 CBS 2 investigation, that led to the state suing Blue Cross Blue Shield on behalf of another man, Patrick Stein, and others with similar medical needs.

Stein was only 17 when he came home from his homecoming dance with a pounding headache. His parents rushed him to the emergency room, and doctors rushed him into surgery.

"The aneurysm ruptured while he was on the table," his father, Nick, said in September.

A massive stroke left Patrick with only the use of his eyes, which he now uses to spell out words, using a color and letter code.

BCBS was fined $25 million for failing to provide care. But years later, Stein's private duty nursing is being pulled again.

What changed?

"Exactly," Nick Stein said. "That's the question that we all ask on our side."

Three different Chicago-area families are stuck in the same boat.

But on Thursday, we are happy to report a stunning reversal in one of these cases.

Aetna never responded to our request for comment. But after we started asking questions, and after State Sen. Laura Fine (D-Glenview) reached out to the state about this case, suddenly the Lanes got a letter.

It stated, without any explanation, that Jeff's private duty nursing had been reinstated.

"I was definitely relieved and excited but definitely a little frustrated from the process we just experienced," Debbie Lane said.

"I would like to say thank you so much to Aetna," Jeff Lane said. "Aetna, you saved my life."

We reached out to Blue Cross Blue Shield of Illinois about both the Steins' case and the Chengs' case. A spokesperson declined to comment, citing privacy concerns.

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