Insurer denies care, but her doctor fights

Every day, thousands of Americans and their doctors fight with insurers for approval of a drug, a test, or a treatment.

It is a fight almost every American has come to know on one level or another.

What happens when an insurer says a lifesaving treatment is unproven, but a doctor thinks the evidence is there? And a patient's life hangs in the balance?

Here is one story.

On Thanksgiving, Paula Robinson, 54, asked her husband to take her to Abington Memorial Hospital. She had immense pain radiating through her arms and legs, and she kept falling. Something bad was happening.

Neurologist David Weisman was on call. He concluded that Robinson had a rare disease, neuromyelitis optica (NMO), a grim, progressive condition that, like multiple sclerosis, attacks the optic nerve. She would lose muscle control and go blind.

He treated her aggressively, but she continued to decline and was hospitalized all spring.

The couple's daughter, Keyshawna, is 14. Robinson missed her daughter's eighth-grade graduation in Philadelphia and all that went with it.

Her husband, Steve, took Keyshawna to her hair appointment and dress and shoe shopping. Father and daughter took pictures on their phones and sent them to Mom so she could have a say from her hospital bed.

Keyshawna also plays flute in the all-city orchestra, and Robinson missed her daughter's audition for the Philadelphia High School for Creative and Performing Arts. "That just tore my heart apart, that I could not be there for her," Robinson said. "This is the stuff I had always done. This is what moms do."

For 20 years, Robinson worked with an agency, caring for a mentally handicapped man, but she had to stop working in November. By March, she had been dropped by her employer's health plan. She continued coverage under the federal COBRA program, for $566 a month. Her aunts and siblings canceled their vacation in Ocean City, Md., so they could put up $1,600 to help cover her insurance.

After some improvement this summer, Robinson's condition plummeted. She was back in the hospital, bedridden. She couldn't stand or feed herself.

Weisman concluded in late July that there was only one treatment left for Robinson. It was Rituximab, a cancer drug. Research indicated it could slow the disease. Several neurologists confirmed his judgment, and he ordered two treatments, at $6,000 each.

Insurance denied it.

Robinson's carrier, Keystone Health Plan East, is an HMO that is part of Independence Blue Cross.

On Aug. 3, Weisman spoke by phone with a medical director at the insurer. He wanted to get her to change her mind. He could not.

After the conversation, Weisman wrote a note to himself: "This is unbelievable. . . . She did NOT DO A LIT SEARCH. She is not aware of the Archives paper, which is the largest trial I could find with 25 subjects. She tells me, 'We don't use Google.' "

Weisman said he sent her relevant studies, pointing out the "money quotes" underscoring the drug's effectiveness, and had a second conversation Aug. 5 in which she affirmed her denial.

"Your denial," he later wrote her, ". . . repulses and offends me."

Weisman knows there is tremendous waste in health care, and "I actually respect her for trying to stanch some of it," he said. "But she picked the wrong dike: She knew nothing of the disease, she knew nothing of the possible treatments. Yet there she was, blocking care."

Weisman held little hope of getting approval.

Five days later, on Aug. 10, walking down a hall, he bumped into John J. Kelly, the chief of staff at Abington - the hospital's top doctor.

Kelly listened to the story of Paula Robinson, shared Weisman's frustration, and that afternoon called an old friend, Donald Liss, senior medical director of clinical programs at Blue Cross.

Kelly made his pitch, and the next day, Aug. 11, after reviewing the literature, Liss approved Rituximab. Kelly had already determined that the hospital would give Robinson the first dose, and eat the cost if necessary.

That day, Aug. 11, Robinson got an infusion. Weisman was so excited, he took a photo of the medicine dripping from the bag on the IV pole.

"Don Liss was very honorable, very helpful," Kelly said. But, he added, "what if I was on vacation?' "

Blue Cross has a different perspective. America is trying to rein in soaring health-care costs. The public and employers want broad coverage, but hate paying higher premiums. Insurers walk a difficult line - approve and pay for appropriate treatments, but hold the line on ineffective and unnecessary care.

Blue Cross says it reviews 85,000 claims a day, and the vast majority are approved without a problem.

Robinson's case, they say, was unusual, both because her neurological disease is so rare and because using a cancer drug to treat it is rarer still.

"At the end of the day," said Liss, "there is judgment and discretion, and it comes down to whether the evidence published in credible peer-reviewed medical journals is adequate to demonstrate safety and effectiveness.

"Two reasonable people may come up with a different outcome," he added, "and that's what happened here.

"When I looked at it, with fresh eyes," he said, "it seemed like something a reasonable physician would do."

Liss stressed that his involvement was not special treatment.

He said that in the initial written denial, which Robinson and Weisman both should have received, were clear instructions on how to appeal. There is even opportunity for an expedited appeal, resolved in 24 to 72 hours.

A fresh set of eyes, perhaps not Liss', would have reconsidered the decision, he said.

In the end, Liss said, through a more informal channel, he provided the same review that would have come from a formal appeal.

Weisman said he had no idea there was another appeal route: "I thought my second call back to her, and her second denial, was the appeal."

Weisman feels this case underscores some painful realities: You think you have insurance, but "wait until you have a rare disease with an expensive treatment."

The case also shows "how balkanized health care has become," he said. "Layers of administration hover over everything."

There is another harsh reality: Sometimes the patient dies.

Robinson got her first treatment Aug. 11 and on Aug. 25 her second. But the disease was far more aggressive than Weisman had ever seen. There simply was not enough time to see whether Rituximab could help. By Aug. 30, the disease had invaded Robinson's lungs. She struggled to breathe. She was clear in her mind - no tubes, no machines - and emphasized that to her husband and her doctor.

"Paula is just tired, and she don't want to fight no more," her husband said. "Whatever this disease is, I hope the doctors can find some type of cure. I don't want to see no one have to suffer and go through what we went through."

Paula Robinson died Monday morning in hospice. Her husband is glad the doctor fought so hard for his wife. He wishes she could have tried Rituximab months earlier.

Weisman does, too. "I'm kicking myself," he said.

The doctor has no doubt that giving her the drug was the right decision.

"We had to give her the best chance," Weisman said. "We were talking about a standard-of-care treatment that I felt had some hope of turning the tide."