Seriously Ill Patients Often Must Battle 2 Foes: Disease, Insurer

WASHINGTONVILLE, N.Y. — A year ago, when the dogwoods were in bloom along Woodcock Mountain Road, John Crescenzo made a discovery that plunged his sunny world into stormy darkness.

He found a lump on his right thigh.

“It was painless, no symptoms,” he recalls. “I thought it was just something from working out.”

Crescenzo, a self-employed waste-oil transporter and the father of two young children, was fit and vital, looking far younger than his 44 years. His doctor thought the lump was a harmless fatty cyst. He recommended a surgeon.

The growth turned out to be a malignant tumor. It was as big as a baseball and growing fast.

Crescenzo spent the summer enduring debilitating chemotherapy, fighting deadly infections and undergoing surgery. As autumn leaves began to fall on the country road where Crescenzo lives, the sarcoma spread. Dozens of nodules riddled his lungs.

Five doctors said they could do no more. Crescenzo’s only hope was a clinical trial underway at a renowned cancer center. But there was a problem: His insurance didn’t cover it.

Thus began an ordeal that would leave Crescenzo battling not only a deadly disease, but also a health maintenance organization that refused to pay for the experimental therapy that might save his life.

He’s not alone. Cancer researchers say a growing number of patients are shut out of clinical trials because their insurers deny coverage--a trend that not only harms patients but hinders the development of new cures.

Last year, California made changes in insurance regulations to help terminally ill patients get coverage of experimental treatments when there’s no effective alternative. Other states are considering similar measures.

In New York state, Crescenzo has become something of a poster child in Lt. Gov. Betsy McCaughey Ross’ crusade for a Patient’s Fair Appeals Act, which would require coverage for experimental treatment. The bill would provide a panel of outside experts to review rejected claims.

Democrat Catherine Abate introduced the bill in the Republican-dominated state Senate in May. A comparable bill was proposed by Gov. George Pataki, with support from Senate Republicans, on June 11.

But an experimental treatment bill sponsored by Democratic Assemblyman Alexander Grannis and endorsed by a broad coalition of health-reform advocates has stalled in the Senate after being passed unanimously in the Assembly for three years running.

On the advice of a friend, Crescenzo’s wife, Jeanne, wrote to McCaughey Ross in desperation after she had exhausted appeals to WellCare Management Group Inc., the HMO to which the Crescenzos pay $6,000 in annual premiums.

McCaughey Ross tried to intervene. She has done the same for others who have contacted her, knowing of her zeal for health-care issues. Sometimes insurers have reconsidered; WellCare did not.

“John Crescenzo’s predicament shows exactly what’s wrong with New York’s insurance law,” McCaughey Ross said. “Here’s a man who needs lifesaving care and his insurance company turned him down, and he had no right of appeal except to the same company that said no.”

Representatives of the insurance industry have lobbied against new legislation.

“Most plans are already covering experimental treatment to some extent,” said Leslie Moran, spokeswoman for the HMO Conference.

Moran defended the internal reviews done by HMOs. “Those appeals processes do work and are already protecting consumers from being arbitrarily denied services.”

But some argue that HMOs are incapable of impartial internal reviews.

“These guys are judge, jury and executioner,” said Dr. James Arseneau, an Albany oncologist. “They tell a patient who they can or can’t see, where they can go, what treatment they can or can’t have.”

Dr. Terence Flannery, WellCare’s medical director who evaluates appeals, said he couldn’t comment on a particular case such as Crescenzo’s.

Flannery said WellCare’s contract explicitly excludes coverage for experimental treatment. But in certain cases where a new therapy shows promise and is well documented in medical literature, he said, “we can allow this extra contractual benefit out of compassion for the patient.”

“The health economists who study this can tell you why it’s very difficult to insure, to put enough money aside to cover all the potential experiments out there,” Flannery said. “It’s a bottomless pit.”

But McCaughey Ross said studies have indicated that covering clinical trials would not cause a significant rise in overall health-care costs.

Insurance denials are becoming more frequent in expensive treatments such as bone-marrow transplants, which can cost $100,000 to $200,000, said Dr. Frederick Applebaum, director of the Fred Hutchinson Cancer Center in Seattle.

“It will have a major impact on clinical research if it goes much further,” said Applebaum, a pioneer in developing bone-marrow transplants for leukemia.

“What people need to understand is that ‘experimental’ or ‘investigational’ doesn’t mean a therapy is unproven,” Applebaum said. “We know the therapy works; we’re just trying to improve it,” by varying the dose or means of administering a chemotherapy drug, for example.

Applebaum said insurers are inconsistent when it comes to experimental therapy, covering inexpensive treatments but not big-ticket items, such as bone-marrow transplants.

Dr. P. Gregory Rausch, an oncologist in Frederick, Md., tells of a 14-year-old girl who had an aggressive lymphoma. Her insurance paid for experimental chemotherapy. But when she needed a bone-marrow transplant, the company balked.

After months of appeals, the coverage was approved. But it was too late. The girl died.

Dr. Georgia Vogelsang, an oncologist at Johns Hopkins University, said she has to write letters to insurance companies for virtually every bone-marrow transplant patient she sees. Many of them have to sue for coverage.

When Sally Kellam, 71, of Albany, was referred by her doctor to a National Cancer Institute-sponsored leukemia study, her HMO refused to cover it. After McCaughey Ross called the company, the bills were paid.

In 1992, Doris Dunkleberger, a 54-year-old Saratoga County kindergarten teacher, was told she had two years to live after being diagnosed with breast cancer that had spread to her bones. Her only hope was a bone-marrow transplant.

Her insurer, Empire Blue Cross Blue Shield, refused to pay, saying the treatment was experimental. She sued, and the company paid the claim while the lawsuit was pending.

This January, Empire announced that it would contract with two medical-analysis organizations to provide independent reviews of denied claims.

“You hope you’ll never have a life-threatening disease,” Crescenzo said. “But if you do, you think your insurance company will be on your side.”

Without WellCare’s blessing, Crescenzo joined the clinical trial at Memorial Sloan-Kettering Cancer Center in New York City, 50 miles south of his rural home. The therapy was designed for precisely what Crescenzo had: malignant sarcoma that had spread to the lungs.

The treatment didn’t involve a new chemotherapy drug, but a new way of administering the standard one. A massive dose was surgically administered exclusively to the lung, rather than the general circulation.

The nodules disappeared on the first lung that was treated. Crescenzo still needs surgery on the other lung, and possibly chemotherapy for a new tumor on his leg.

“We still have a long road ahead of us,” his wife said.