What Cancer Causes, and How It Is Covered

It was a sunny afternoon in Green Bay when I met Larry Bednarski for our interview. I was in town writing about the Cancer Treatment Fairness Act, and The Leukemia & Lymphoma Society had put us in touch. As we sat across the table at a McDonald’s on a busy intersection, he laid out his story.

Bednarski was diagnosed with multiple myeloma, a cancer that attacks plasma cells and causes the blood to make extra protein. It’s controllable, but not curable. It causes nausea, confusion, kidney failure, fatigue and bone damage.

For Bednarski, it first caused headaches. It caused the diagnosis, hospital visits and expensive medication.

Then it caused four of his vertebrae to collapse and the worst pain he’d ever experienced.

“That pain is… I can’t describe it,” he said. “I was standing and all of a sudden it hit. I got out of bed, and it hit, and I fell back in bed, screaming, literally.”

I met with Bednarski to talk about the Wisconsin Cancer Treatment Fairness Act, legislation that would require insurance providers to cover IV and pill forms of medicine at the same price to the patient. (Currently pill forms of cancer treatment tend to be more expensive, which keeps some patients from getting the best, easiest or newest medicine available. Read more about it here>>.)

Bednarski didn’t really deal with the cost disparity between forms of treatment. He was given the option to get medicine through a port in his chest or through a pill. He was strong enough for the pill and that’s what doctors ultimately recommended, but only after they were sure he could find a way to cover it.

“An option would have been a port,” Bednarski said. “That would have been covered like ‘that’. The pill was also covered but I noticed, I sensed a little bit of concern on the doctors’ part and the doctors’ staff’s part because they had to talk to the insurance company about it. It wasn’t as automatic… That was a little red flag for me.”

Again – Bednarski was never denied the pill treatment, Revlimid. The doctors fought for his access to it, and the insurance company covered it in part. The pills, which he took daily 21 days a month for several months, are $450 each. He still takes a form of them, but now a smaller dosage and less often.

Insurance covers his medication after he reaches a $10,000 deductible. The pharmaceutical company that makes Revlimid, Celgene, helped Bednarski find grant money to help him pay that $10,000 before insurance kicked in. Bednarski also gets financial help from the Leukemia & Lymphoma Society.

“This pill is so expensive that the pharmaceutical company that makes the pill, they need their money up front before they send the pill,” Bednarski said. “They’re so used to people not being able to pay they automatically go out and look for assistance for you.

“There was a time [insurance companies] would not approve the pill because it was considered experimental. That’s accepted now. Now, if a new pill comes out, or a new procedure, it may be considered experimental for a period of time, and people who need that medicine will have to get it through private funding or their own money until the insurance company finally says ‘ok, it’s approved.’”

Although Bednarski is on track to get the pill form of his cancer treatment, he said his insurance’s hesitancy to cover other procedures caused treatment delays and excruciating pain.

The procedure to reconstruct his collapsed vertebrae was a big example. He had back pain and the insurance company wanted him to get x-rays to find the problem rather than an MRI, he expects in order to try the cheaper option first. He had 27 x-rays, and none showed his crumbling vertebrae.

Finally he was granted an MRI, the night before he collapsed in bed.

“If they would have had MRIs approved, covered, in a situation like this, I think all of that pain would have been avoided,” Bednarski said. “The trouble would still be there, but before my vertebrae actually collapsed and fractured I would have been in the hospital getting repaired.”

In a way, Bednarski understands where the insurance companies are coming from. They’re businesses, and they only want to pay for treatments they know will work. But he said there’s a greed factor, too, that keeps them from covering treatments that doctors say are best for some patients.

“I believe it’s timing,” he said. “It’s how many patients are getting this treatment. The insurance company wants to see results. They want to see something going on for some period of time so they can collect statistics and costs, then they’ll cover it. I can’t blame them, but I think they’re very often too stringent.

Bednarski agrees with the concept of the Cancer Treatment Fairness Act – patients should have access to the best treatment available without an unreasonable cost. But because of fear that higher premiums putting good insurance coverage out of reach, Bednarski is wary of legislation that tells private companies what to do.

“I think that’s good. I think it’s positive, but what will that cost?” he said. “I think the problem with programs is it looks good on paper, but when you start to implement, you start to see the real costs that they’re starting to see now, it’s not as rosy a picture… Some kind of improvement is needed, there’s no doubt.”

The real reason Bednarski agreed to meet with me on one of the last warm days of the year was to share his story. Despite his wariness of talking to the press, Bednarski wants to make himself available to other patients dealing with multiple myeloma. Please email me at [email protected] or call the Peninsula Pulse office at 920.839.2121 for Bednarski’s contact information.