When Insurers Won't Pay for Experimental Treatments

By<a Href="http://abcnews.go.com/sections/wnt/worldnewstonight/williams_jim_bio.html">jim Williams</a>

ST. &nbsp; L O U I S, Feb. 22, 2001 -- Just last year, Debbie Robison of Decatur, Ill., was a vibrant 45-year-old.

She had her own business teaching the elderly how to use computers, and she enjoyed taking cruises with her husband, Joe.

But last spring, she noticed something was terribly wrong with her body.

"I felt like I had a big bowling ball in my belly," she says.

She found out that she had an advanced stage of ovarian cancer, a disease that kills half its victims.

Robison's doctors believed there was only one way to save her life: a stem cell transplant combined with almost lethal doses of chemotherapy. It's a treatment that is both controversial and expensive. Despite the risks, Robison was willing to go ahead with it.

"I thought, I'm too young to die, and if that's what it's going to take to save my life then, I was going to do it," she says.

Treatment Too 'Investigative'

But her husband's employer, the construction and mining equipment manufacturer Caterpillar, runs its own insurance plan. Company officials said the procedure was unproven and "investigative," so they refused to pay for it.

It's not unusual — insurers often require that a medical procedure be thoroughly tested and proven effective before they decide to cover it. Unfortunately, it's a lengthy process, and people with life-threatening illnesses don't have time to wait.

In Robison's case, her condition was deteriorating so fast that her doctors believed she had to have the treatment within six months. They convinced Barnes-Jewish Hospital in St. Louis to pay half the cost, but the Robisons would still owe more than $60,000.

Debbie Robison went ahead with the treatment last month, but fears it will bankrupt her family.

"I just did not feel that I had the right to spend everything that we had worked so hard all our life for," she says.

Nevertheless her husband, a supervisor at Caterpillar, was very supportive of her decision. He insisted that she have the treatment, despite the high medical bill.

"I'll live in a tent if I have to," he says. "I want my wife to live."

He's taken off work for several months to be by her side.

Insurance Industry Defends Its Policies

Patient advocates believe insurers should consider the time factor when someone has a serious illness.

"When we begin to deny cancer patients access to therapies that treating physicians say hold the greatest promise for them, the health plan is not focused on the issue of time," says Nancy Davenport-Ennis, president of the Patient Advocate Foundation.

But the insurance industry argues that even patients with little to lose can still be harmed.

"In a number of instances, the new therapy — the therapy being proposed — will not be successful and will have more complications," says Dr. Charles Cutler of the American Society of Health Plans.

Cutler points to a new treatment given to some breast cancer patients a few years ago. The very high doses of chemotherapy ended up doing more harm than good, he says.

Ray Werntz of the Consumer Health Education Council believes Debbie Robison's case shows just how difficult it is to write an insurance plan that is fair to everyone.

"If you have four experts dealing with someone's cancer problem, you may have five or six different answers, all of them valid," Wentz says.

Debbie and Joe Robison sued Caterpillar, and a judge ordered the company to pay for her treatment. Caterpillar, which refused an on-camera interview with ABCNEWS, is appealing the decision.

Debbie Robison remains angered by the company's decision.

"What they're telling me is that they're not going to waste their money putting it out on me, because in their view, I'm already dead anyway," she says.

If Caterpillar ultimately wins the case, the Robisons will have to pay back thousands of dollars in debt, which is added stress for a woman fighting to stay alive.

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