By Megan Hickey

CHICAGO (CBS) — He’s been fighting to stay alive for nearly a decade, but after years of intensive nursing care, Patrick Stein’s insurance company, Blue Cross Blue Shield of Illinois, is taking it all away.

His doctor warns it’s a move he might not survive.

CBS 2 Investigator Megan Hickey is asking why.

Patrick Stein is an avid Chicago sports fan. He loves the Blackhawks, Cubs, and Bears, and he’d be more than happy to tell you about it.

Patrick, 27, is incredibly smart, but he’s been trapped inside his body for a decade.

He 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,” said his father, Nick.

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.

With his eyes, he talks about the future, about finishing his associate’s degree, about one day moving out; but now his family worries that will never happen.

“Without this he will die,” said his mother, Colleen.

For years, his insurance provider, Blue Cross Blue Shield of Illinois (BCBS), covered 24/7 private-duty nursing. Last year, BCBS told the family that coverage was ending.

What changed?

“Exactly; that’s the question that we all ask on our side,” his father said.

BCBS says his parents should take care of Patrick’s vast medical needs, but Patrick’s doctor said that’s not possible.

“One hundred percent — without the skilled nursing care that Patrick needs, it is a matter of life and death; period,” Dr. Phil Sheridan said.

“That’s a hard one to stomach,” Colleen said.

And if this fight sounds familiar, it’s because it’s not the first time the Steins have been through it. In 2013, CBS 2 Investigator Brad Edwards exposed Patrick’s first battle for coverage.

Back then, Patrick was denied private nursing coverage by BCBS. The state sued the BCBS on behalf of Patrick’s family and others with similar medical needs.

BCBS was fined $25 million, and is now forced to pay for Patrick’s care.

But now, they’re saying that they’re done.

“Insurance should be there for our protection,” said Illinois state Sen. Laura Fine (D-Glenview).

Fine called the move reprehensible.

“This should not be happening to them,” she said. “They should be able to care for the son, the way they need to care for their son because they have the coverage that is supposed to be there to provide for them.”

Fine is calling on BCBS, the Department of Insurance, and the Attorney General’s Office find a fix.

“They’re legally obligated, they’re morally obligated and there’s no excuse,” Dr. Sheridan said.

Patrick has some thoughts about the matter, too. Using a computer program that meticulously spells out sentences using the motion of his eyes,
He sent us this:

“I have come a long way and made steady progress, but without the help of Blue Cross Blue Shield, I won’t be able to continue my journey,” he said.

“As a matter of course, we do not comment on pending litigation.  Also, to protect the privacy of our members, Blue Cross and Blue Shield of Illinois does not disclose their personal health or benefit information,” a BCBS spokeswoman wrote in an email. “Our members are at the center of all that we do and we are committed to providing all of our members access to quality health care consistent with the terms of their benefit coverage.  If a member questions a benefit determination, we encourage them to file an appeal for a review of the decision.”

The Steins said they will continue pushing.

Megan Hickey