Ft. Lauderdale Sun Sentinel

Nancy Dunkle is a six-year survivor of ovarian cancer but an insurance company has decided not to pay for treatment that might help her live longer.

Robert Dewey was ready for a liver transplant that might save his life but his HMO and his hospital couldn’t agree on a price. While they haggled for 11 days, his condition worsened and he died.

Insurers can deny or delay expensive procedures without much fear of having to pay big damages if a lawsuit is filed, said Jeff Liggio, past president of the Academy of Florida Trial Lawyers.

That right of a patient to sue for damages is at the heart of the so-called “patients’ bill of rights” approved by the House of Representatives in October. The future of such legislation in Congress this year remains in doubt.

The Florida Legislature will consider a similar bill in its session that opens March 7.

Liggio said quirks in federal law now protect HMOs rather than patients.

HMOs were largely protected against lawsuits by the legislation that created them. A separate barrier to lawsuits exists if the patient’s HMO or insurance is offered through his employer as a company benefit. Such coverage falls under a federal law commonly referred to as ERISA, the Employee Retirement Income Security Act of 1974.

Under ERISA, if the insurer loses a court case, no punitive damages apply.

“All they have to pay is what they should have paid in the first place,” said Jamie Court, founder of Consumers for Quality Care, a health care watchdog group that is part of the nonprofit Foundation for Taxpayer and Consumer Rights, based in California.

“If the patient dies before receiving the treatment, the insurer or HMO pays nothing. Because there is no meaningful penalty for denying medically necessary treatment, there is no incentive to approve costly care,” Court said. Free to choose

Dunkle, 64, of Port St. Lucie, has the best type of insurance money can buy — an indemnity policy, not an HMO — which means she is free to go to any doctor or hospital. The UnitedHealthcare policy is part of her husband’s retirement benefits after nearly 33 years with US Airways.

, Dunkle’s coverage allowed her to get the cancer treatments recommended by her doctors. But when the cancer came back she had only two options, she said — death or a high-dose chemotherapy treatment followed by a reinfusion of her own stem cells to reconstitute her immune system.

“I’m hard-headed and a fighter and I wasn’t ready for hospice,” she said.

Dunkle went through the stem cell harvest and was scheduled for the high-dose chemotherapy on May 20. But on May 19, her husband got a letter from UnitedHealthcare saying it would not cover the procedure because it wasn’t medically necessary or appropriate in her case.

“Who in their right mind would go through stem cell if it wasn’t necessary?” Dunkle asked. “The letter knocked my socks off me, then I got angry. And so did my husband. This is an insurance company deciding who’s going to live and who’s going to die.”

“I know there is a time to give up and accept,” Dunkle wrote to the insurer, “but in my heart I do not feel that time has arrived.”

She appealed United’s decision twice and was turned down twice, despite support from Dr. Nicholas D. Iannotti, who sent the insurer copies of studies.

They included one published in the Journal of Clinical Oncology in 1997, which showed the procedure had a nearly 60 percent survival rate after five years compared with 20 percent to 30 percent for conventional ovarian cancer therapy.

But Dr. Lee N. Newcomer, senior vice president of health policy and strategy for United in Minneapolis, said Dunkle’s case was reviewed by two outside experts who said she would not benefit from the procedure.

Florida law spells out to insurers that the stem cell procedure “is considered accepted within the appropriate oncological (cancer) specialty,” as long as it is performed as part of a clinical trial. But because Dunkle’s coverage falls under ERISA, Florida law does not apply.

 

Dunkle is suing UnitedHealthcare, anyway.

Liggio, who represents Dunkle, said the longer insurers drag out the fight in cases involving a life-threatening illness, the more likely the patient will die and they won’t have to pay for the procedure. Losing the fight

 

Robert Dewey’s daughter thinks that is what happened to him.

Dewey, of Seminole, needed a liver transplant and died at age 67 after waiting for United to reach an agreement with Shands Hospital in Gainesville on the price for his care, said Martha Bergren, a doctoral candidate in nursing at the University of Minnesota.

She said her father had been through all the tests necessary to qualify for a liver transplant as of April 28, 1998, and was waiting for a donor.

The family was told Dewey should go to Jackson Memorial Hospital in Miami, part of the managed care plan’s network of providers, where the procedure would be covered.

The family — Bergren’s five siblings include a brother who is a transplant nurse — wanted him to have the surgery at Shands because it is near his home and friends and support system. Dewey was hospitalized at Shands at the time.

 

Eventually, UnitedHealthcare agreed.

“However, my father could still not be placed on the transplant list. For the next eight days, United stalled and negotiated with Shands for a lower price,” Bergren said. She said the wait weighed heavily on her father and his condition worsened.

“He was extremely demoralized, discouraged and fearful knowing that he was in a financial limbo,” Bergren said. “Every day that ticked by he knew he was on borrowed time. With the HMO it’s a business thing, they go home at 4 on Friday. When the weekend started and he knew they weren’t going to be discussing it, he was depressed.”

On May 5, United called off talks and told the family there was no choice but to transfer Dewey to Jackson Memorial, Bergren said.

But for two more days, Jackson did not have a bed available and his condition continued to deteriorate.

Jennifer VandenBrook, spokeswoman for Shands, said the insurer chose not to accept the discount Shands offered.

 

“It’s a very sad case,” she said.

Phil Soucheray, spokesman for UnitedHealthcare, said: “One of the jobs that managed care is trying to do is to hold the health care system accountable for the money that is spent. We didn’t have a contract with Shands. We told them if he ever got to the point where he desperately needed a liver and it was over a weekend, go ahead and do the surgery.” Too late

By the time Dewey arrived at Jackson, he was critically ill and needed to be admitted to an intensive care unit but there were no beds.

“My brother basically took care of him,” Bergren said. Her father died May 8.

“We knew about the health care system and we couldn’t come up with the (right) outcome,” Bergren said. “How do normal sick elderly people deal with this system?”

Bergren said she believes managed care corporations should be held accountable for their decisions.

“As a nurse, I am held accountable. Hospitals are held accountable. Paramedics are, so why are HMOs held exempt when their decisions affect the outcomes of care? I don’t understand why the federal government has exempted just this one group,” Bergren said.

GRAPHIC: PHOTO, Staff photo/Taimy Alvarez; DETERMINED TO LIVE: Nancy Dunkle, of Port St. Lucie, was a six-year survivor of ovarian cancer before the disease came back. She hoped to undergo a stem cell treatment but her insurer refused to cover the procedure, saying it wasn’t medically necessary or appropriate. “I’m hard-headed and a fighter and I wasn’t ready for hospice,” she said, holding the stuffed bunny that has accompanied her to every cancer treatment.