When the insurance company first says no

Clyde and Emma Rasmussen stayed in a one-bedroom apartment at the Cancer Care Alliance House in Seattle for the first part of Clyde’s treatment. Now they’re paying almost $2,000 a month for an apartment not far from the cancer center where his recovery is monitored.
Clyde and Emma Rasmussen stayed in a one-bedroom apartment at the Cancer Care Alliance House in Seattle for the first part of Clyde’s treatment. Now they’re paying almost $2,000 a month for an apartment not far from the cancer center where his recovery is monitored. Special to the Idaho Statesman

It all happened so fast. Until it didn't. Then it was unbearably slow.

Clyde Rasmussen had been chopping a log to burn in the fireplace in the Boise home he shares with his wife and business partner, Emma. It was hardly strenuous exercise for Rasmussen, an avid biker and skier. But when he was done, his back hurt. So he went to a chiropractor. Then he went a couple more times.

It didn't help.

"I think you need to see a physical therapist," the chiropractor told him.

So Rasmussen, a real estate agent in his late 50s, went to a physical therapist, who said, "You need to get an MRI right away."

The Rasmussens took that seriously. They headed to a Downtown medical imaging center. It was late on a Friday evening by then, so an employee sent them to an emergency room, where Clyde got an MRI - a scan that costs anywhere from hundreds to thousands of dollars.

Early Monday morning, they got a call. The doctor who had ordered the MRI spotted something suspicious. He told Rasmussen to see a neurosurgeon near Saint Alphonsus Regional Medical Center.

When the couple arrived, the doctor pulled up a medical image to show them what he saw. "I hate to tell you this," he said, "but you have multiple myeloma."

There were holes in Rasmussen's spine and there was "a huge tumor," Emma said.

Multiple myeloma is a kind of blood cancer that starts in bone marrow, affecting plasma cells. It ravages the bone, stresses the kidneys and crowds out healthy blood cells. Just more than 45 percent of people live more than five years with the disease. It's more common among Clyde Rasmussen's demographic, men older than 50.

His disease was at its most advanced: Stage III.

Emma Rasmussen recalled the doctor saying: "You need to have surgery right away, like tomorrow. I can tell you, 99 percent, if you don't get this (surgery) almost immediately, you will be paralyzed."

Clyde Rasmussen, whom Emma describes as the picture of emotional strength, looked like he was going to pass out, she said.

The next day, he went under the knife. He emerged weak, barely able to walk.

It was a couple of days before Thanksgiving 2012.


After the surgery, Rasmussen graduated to an array of cancer treatments - radiation, chemotherapy, a list of expensive drugs.

But this year, they hit a roadblock: Their insurance company stopped paying.

The Rasmussens, like other Idahoans, would learn that although insurers are required under the Affordable Care Act to cover everyone - even those with a history of expensive maladies - they can still refuse to pay for treatments.

One industry whistleblower thinks insurers will deny more claims as they try to make up money they must spend on other health care law requirements, including providing colonoscopies and other preventive care at no cost to the patient. Idaho's largest insurance companies say that's not true, and they note that patients may appeal decisions they think are wrong.

Frustrated Idaho consumers often plead their cases to a state regulator, the Idaho Department of Insurance, after an insurer rejects a claim or declines to green-light a treatment. The department has looked into more than 200 such complaints filed since 2011 against Idaho's two largest insurers, Blue Cross of Idaho and Regence BlueShield of Idaho.

Clyde and Emma Rasmussen navigated the appeals process - and told their story to the Department of Insurance and the Idaho Statesman - as they waited in Seattle for Blue Cross of Idaho to agree to pay for a bone marrow transplant.


The Rasmussens traveled to Seattle in April 2013 to get the opinion of a Seattle Cancer Care Alliance specialist, Dr. William Bensinger, on the recommendation of their St. Luke's Mountain States Tumor Institute doctor.

The Seattle specialist said Clyde should take two drugs and have a stem-cell transplant, followed by a bone marrow transplant.

The couple returned to Boise with a plan. Clyde had two rounds of chemotherapy and a transplant of his own stem cells. Insurance covered that. The only thing left was to receive a stranger's bone marrow, and the Seattle cancer center booked that procedure for Feb. 21. The Rasmussens arrived in Seattle about a month early, so doctors could prepare Clyde's body for the transplant.

But Blue Cross of Idaho began to balk.

"In January of this year, it seemed like everything started really changing with Blue Cross," Emma said. "It was kind of like, all of a sudden, everything was starting to be denied."

She said the insurer declined to pay for a new, expensive drug but also stopped covering a drug that her husband had been taking for a while. (The manufacturer of the new drug ended up giving it to the Rasmussens for free - a fairly common practice.)

Blue Cross of Idaho sent a denial letter to the cancer center on Feb. 12, nine days before the procedure, saying that the transplant wouldn't be covered because it was "investigational."

Blue Cross had reviewed Clyde's case and decided the specific type of transplant his doctors wanted to give him wasn't allowed under the medical policy.

The cost of the transplant - $801,000 in a lump sum - was a brick wall between Clyde and a healthy stranger's bone marrow.

The couple filed an appeal to Blue Cross on Feb. 14. One of Rasmussen's doctors followed up with a letter Feb. 20, saying the transplant was "the best long-term survival option" for Rasmussen. He noted that Blue Cross already approved preparatory work for the transplant, "which seems costly and senseless if the plan to proceed is abandoned."

The insurer responded with another denial Feb. 25. Recent research cast doubt on earlier evidence that a transplant would really accomplish much more than treatments Rasmussen already had received, the letter claimed.


Emma Rasmussen was desperate when she called the Idaho Statesman.

"I'll sell everything I own to keep him alive," she said. "If he doesn't get (the treatment covered), his life expectancy is not very long."

Her husband had 33 months left to live under his diagnosis. A transplant could buy him several more productive years.

Clyde began to wonder whether the insurance company's first response was always a denial, "just to test you." He wondered whether Blue Cross did the math and decided it would just be cheaper to let him die.

"It quickly changed from a medical challenge to a political and economic argument," he said. "You spend years paying into an insurance program, and you like to think they're going to take care of you."

The couple stayed in Seattle, living in the cancer center's guest house for $91 a night, hoping Blue Cross would be convinced.

Clyde still went to the hospital every third day, spending six to eight hours undergoing various tests, with Emma by his side. They paid for everything themselves.

Clyde was still hard at work from Seattle, handling his real estate business and setting up open houses remotely.

But doctors said the longer that Clyde took pretransplant medications, the more risk he had of damaging his internal organs. The number of months he had left was dwindling.

Meanwhile, he stayed current on his Blue Cross premiums of $342.98 per month.


It's not as though insurance companies have just started denying claims because of the Affordable Care Act. They have been heavily criticized for years for turning down payments or not covering people who have serious - and expensive - medical problems.

Sometimes, insurers reject claims because they lack documentation - if a patient has multiple doctors for the same medical issue, but only one set of records is submitted with an appeal, for example.

But other times, they're just being greedy, says an insider-turned-critic of the health insurance industry. He thinks that they could get stingier as they follow the Affordable Care Act.

"I have a concern that insurers might even be more aggressive in claims denials and refusing to authorize coverage for procedures because there are going to be other ways in which they are going to be facing reduced profit margins, and they may be looking for other ways to maintain those profit margins," said Wendell Potter, who previously worked as head of communications for insurers Cigna and Humana.

Insurance companies do a balancing act among competing interests - making sure premiums are low enough to keep customers from running into a competitor's arms, but high enough to cover medical claims; not paying health care providers too much, but enough to keep them from dropping out of the network; and earning enough income to satisfy shareholders, members or regulators.

Potter has testified before Congress and written about what he calls "deceptive public relations, advertising and lobbying efforts" by the insurance industry.

"It's all about the money," he said, and he thinks that's especially true with for-profit insurers - who are basically nonexistent in Idaho, except for large-employer health plans.

Blue Cross of Idaho and Regence, as well as two other companies selling plans on the Idaho health exchange, have not-for-profit status.

"I will say this," Potter said. "Resources are not infinite, and insurance companies shouldn't be expected to pay everything that comes their way, because there is fraud in health care, so they need checks in place."

And claims are reviewed by human beings with varied qualifications and backgrounds. Whether something is covered can be "luck of the draw," he said.

There are no industrywide criteria for what qualifies a treatment as "investigational," Potter said.

"In some cases, those kickbacks (of claims for more information) and denials are such that the health care provider or patient will give up, or think they don't have the ability to resubmit," he said.


Blue Cross said the new coverage requirements under the Affordable Care Act don't affect how many claims it denies. Its premiums do, however, build in what the company expects to spend on now-mandatory services and on people who've gone without insurance and now might discover they have serious medical problems.

The company, like other insurers, has a massive set of policies on what it will and won't cover.

Dan Zuckerman, an oncologist and hematologist who is medical director of the Mountain States Tumor Institute, said he is "having to do more appeals and more prior authorizations" for treatment, asking insurers to cover $10,000 cancer treatments.

"We have not decided as a society, 'How much are we really willing to allocate to health care, and what type of health care?' " Zuckerman said. "... The insurers are put in the difficult position of making value judgments."

Josh Jordan, spokesman for Blue Cross of Idaho, said the cost of a drug or a surgery never factors into insurance decisions. Instead, he said, Blue Cross medical directors make their calls based on more than 500 medical policies and national research.

"It's 100 percent about standards of care," he said.


The Rasmussens were still in Seattle when they heard on March 5 that Blue Cross had reversed its decision.

It had been about a week since the Rasmussens appealed to the Department of Insurance.

"I'm just thrilled, and I'm actually shocked," Emma said.

Clyde Rasmussen went from waiting on paperwork to waiting on the bone marrow of a 33-year-old male donor to arrive in Seattle, where it would be pumped into him through an IV.

What had changed? The doctors for Clyde Rasmussen and a doctor hired by Blue Cross to review medical procedures talked to each other.

"Sometimes additional information comes to light, and we're able to take another review," said former Blue Cross spokeswoman Karen Early, who has since become spokeswoman for a Montana health insurance cooperative that plans to enter the Idaho market this year.

"This is how the system is supposed to work. Sometimes a conversation is the best way to make sure everybody is on the same page. Our physicians will always talk to physicians on the phone."

Blue Cross said it rejected the transplant at first based on medical records and letters. But the same day the Blue Cross doctor - whose identity was not disclosed - talked to Rasmussen's doctor, the insurer reversed its decision.

Though the doctors at Blue Cross are "always" willing to talk with a patient's doctor, they don't always reach out by telephone, Early said.


Clyde Rasmussen's transplant happened on a Saturday morning in April, exactly a month after Blue Cross agreed to cover the procedure.

The couple will be in Seattle until July, as doctors monitor how Clyde's body is handling the new bone marrow and the immune system weakening that preceded it.

They've rented an apartment there for about $1,900 a month. It takes seven minutes to walk from there to the cancer center.

"Our next hurdle is we're supposed to pay up to $5,000 a year for housing and other associated costs" before the insurer will reimburse them, Emma Rasmussen said.

"We're already way past that, and I filed that (claim) right away. And I haven't heard anything back," she said.

They went past the $5,000 threshold in 2013, too. As of early April, they were working on appealing a denial for that claim.

A spokesman for Blue Cross said Friday that the Rasmussens should get a letter in the mail this week with good news: The insurer has agreed to pay travel costs.

It could have paid them earlier - first, though, it needed proof that Rasmussen was in Seattle for a procedure Blue Cross would cover.

Audrey Dutton: 377-6448, Twitter: @IDS_Audrey

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