Health

(WCCO) Of the 5 million people living in Minnesota, a very small number are afflicted with extremely rare, and expensive, diseases. They're so rare that doctors sometimes have trouble diagnosing them and insurance doesn't always cover them.

Now, the Minnesota legislature may change the law and order insurance companies to provide life-saving treatment to patients who might die without it.

Julie Knutson of Chisago City pays more for her weekly medicine than most people pay for their mortgage.

"This costs approximately $1500 to $1700 a week," said Knutson, holding a plastic bag with six small boxes. "Just for this."

It's not just any medicine. Knutson calls it 'liquid gold.' Her immune system is so weak that she can't be exposed to germs and bacteria at hospitals or clinics, and she limits her visits to grocery stores.

So every Monday at her home in Chisago City, she mixes up a life-sustaining solution of blood plasma and transfers it to an IV bag. Dreading every moment, she puts a needle in her vein, physically appearing light headed and sighing.

"I hesitate. I'm like.... here I go again. The sticking part. I can't," she says, her words dropping off.

Knutson is one of just 100 people in Minnesota with a rare condition called Alpha-1. It's a genetic disease that's eating away at her lungs and sharply cutting her ability to breathe normally.

"It's destroying my lungs," she said matter-of-factly. "Basically I'm suffocating."

What's hardest for Julie isn't living with a debilitating disease. She's worried more that she'll lose her insurance coverage.

Knutson lost her job last November and she said she had to fight her insurance company just to be covered, or getting her plasma protein medicine changed to a cheaper, and she says, less effective generic brand.

"Why do I have to struggle?" she asks. "Why do I even have to worry about where's the money going to come from to pay for this stuff? I shouldn't have to. None of us should have to worry about that."

Alpha-1 is a rare disorder that people "don't really understand," says Sen. Kathy Sheran, DFL-Mankato.

And there are other diseases that rely on plasma protein therapies like von Willebrand disease, a blood-clotting disorder. Only 400 Minnesotans have such rare diseases, according to the Immune Deficiency Foundation. Many of them spend as much time battling insurance companies as their illnesses.

And Sheran wants the state to order insurance companies to cover all of them.

"And for patients whose health is really quite compromised," she said. "That distress, that stress of trying to constantly be pursuing the right to receive treatment for their care adds to an already compromised situation."

What everyone agrees on is that the cost of medical care, especially for rare illnesses, is jaw-droppingly expensive. But insurance companies argue that ordering them, by law, to cover certain patients and certain treatments will cost even more for everyone else.

Minnesota law already requires insurance companies to cover more than 60 different kinds of illnesses. That's the most in the nation. Eight more mandates are pending in the Minnesota legislature this year, which industry experts say could raise premiums 20 percent.

"Your heart really goes out to these people because you hear the heart-wrenching stories of people who need this sort of treatment and need to have it covered," said Mark Kulda of the Insurance Federation of Minnesota.

"The reality of it is most people are asking insurance companies to do everything possible to lower insurance premiums. And every time you add on a new mandate it's going to increase health insurance premiums," he said.

But that's a hard argument to make at Julie Knutson's kitchen table in Chisago City. She compares insurance company profits to Wall Street greed.

"They've got way too much power and control," she said. "They're making decisions they don't have the right to make."

Knutson lives on unemployment and pays monthly insurance premiums. Her medical expenses are covered through COBRA, the insurance program for people who are out of work. That runs out at the end of the year, and she's not sure what she'll do.

But in Knutson's world, there's always a bright side.

"I was told I only had two to five years left to live," shy said. "It's been five years. And obviously I am still here. And I'm still kickin'."

(© MMIX, CBS Broadcasting Inc. All Rights Reserved.)

More Special Reports

• New Economy
• Good Question
• Reality Check
• Don Shelby's Good To Know
• Finding Minnesota
• I-TEAM Investigations
• Project Energy