Drawing the Line: an HMO Dilemma

Even now, 10 months after Christy deMeurers died of breast cancer, her doctors are trying to unravel why her case turned into such a disaster.

“This was a really destructive case,” says John A. Glaspy, her principal physician at UCLA Medical Center’s bone marrow transplant program. “It went spinning out of control.”

What befell the young schoolteacher from Riverside County, her family and her doctors is indeed a medical horror story--but not one involving operating room blunders or botched diagnoses. It is a story of problems arising almost exclusively in conference rooms and lawyers’ offices, and it revolves around this explosive question:

Did Health Net, whose 1.24 million members make it the state’s second-largest health maintenance organization, try to pressure doctors at UCLA to deny a bone marrow transplant to DeMeurers because of the expense?

Health Net says no, arguing that its contacts with DeMeurers’ doctors were routine and responsible.

But a panel of three private arbitrators ruled in October that the answer was yes. The HMO’s interference with the doctor-patient relationship in this case, they found, constituted “extreme and outrageous behavior exceeding all bounds usually tolerated in a civilized society.”

For that and other Health Net actions they judged “clearly over the line,” they awarded DeMeurers’ family $1.3 million in damages.

The case cost UCLA dearly as well: The university performed the transplant for DeMeurers at its own expense, at a cost estimated at more than $55,000, after Health Net refused to approve the procedure.

But long before the arbitrators’ ruling, the wrangling over DeMeurers’ care had placed these two mammoth California institutions on a collision course, with her family caught in the middle.

“The insurance company had always made a promise to us that they would take care of our health,” Alan deMeurers, Christy’s husband, testified later in connection with the arbitration claim. “That’s what an insurance company did, it looked out for our best interests.” For Health Net to refuse to treat her at the moment of her ultimate crisis, he complained, was tantamount to breaking faith.

More broadly, the case raises new and troubling questions about whether the emerging realities of managed health care--in which HMOs not only provide their members with treatment but tell them where they must go to receive it--compromise doctors’ integrity and undermine their traditional role of advocates for their patients.

That is a critical question, especially in California, where more than 40% of residents with private health plans--about 12 million men, women and children--are covered by aggressively expanding managed care plans. More than 56 million Americans are covered by such plans.

As the reach of HMOs grows, so do questions about their approach to cost-cutting. Never do these issues resonate as forcefully as when costly therapies are enlisted to fight hard-to-cure diseases--like advanced breast cancer. At such times, the patient’s fate is often determined not in the operating room, but in the hearing room.

The Battle Unfolds

The DeMeurers case, with its wealth of documentary evidence and the unusual willingness of all parties--including the patient’s family, her doctors and her HMO--to submit to interviews, provides a rare look into how such a battle unfolds.

For its part, Health Net denies having pressured Glaspy and other doctors over their recommendations for Christy. The UCLA physicians say they never felt pressure and would not have capitulated to it if they had.

But there is no question that the case locked UCLA into two potentially incompatible roles--as the recipient of an exclusive multimillion-dollar Health Net contract to provide bone marrow transplants in Southern California subject to the HMO’s approval, and as an advocate ethically bound to fight the same HMO on its patient’s behalf.

The embodiment of that dilemma was the burly, voluble Glaspy, 42, director of UCLA’s Bowyer Oncology Center and an associate professor at its medical school.

The offspring of a family of Ohio attorneys, Glaspy was never shy about denouncing lawyers for having turned the practice of medicine into an adversarial undertaking. It was a subject he knew well; by the time of his first consultation with Christy he was spending two days a week testifying or giving depositions for patients seeking marrow transplants from insurers.

But as the bureaucratic maneuvering over this patient’s care grew more complex than the high technology arrayed against her disease, Glaspy’s position became so equivocal that he filed two legal affidavits in Christy’s lawsuit against Health Net: one supporting his patient, and one supporting her HMO.

“I should have known there was a conflict of interest coming,” he said later. “And I should have known that my potential to tiptoe through the minefield was pretty small.”

Devastating News

All of that was well in the future in the spring of 1993, when Christy deMeurers and her husband learned that her breast cancer had recurred and spread into her bones.

The news was devastating. She was 32. The chance she would see her children, ages 6 and 8, reach maturity was rapidly receding.

Since her discovery a half-year earlier of a lump on her breast, she had undergone a lumpectomy, a mastectomy, radiation and chemotherapy. Each time the disease came back, worse than before.

When her doctor told her that the latest bone scan showed several spots on her ribs “lighting up” from metastasized cancer cells, “she was at the point of tears,” Alan deMeurers recalled recently in his home near Salem, Ore. (The family moved to Oregon shortly before her death.)

“First the bone scan was OK,” he said, “then it wasn’t OK. She was thinking, there’s no hope.”

That hurt, because nothing defined Christy so much as her optimism; for a time she had even played the saxophone with the sunny “Up With People” troupe.

She and Alan, a 6-foot-6 New Englander, had met at Linfield College, a tiny Baptist college in McMinnville, Ore., southwest of Portland. In time they found jobs teaching in the Lake Elsinore public schools, he in kindergarten, she in fifth and sixth grades.

But the latest diagnosis meant that she faced the prospect of spending the rest of her life on chemotherapy. The treatments made her violently ill and left her physically and psychologically drained for days. She had to cover up the loss of her luxuriant brown hair with a wig. Devoted to teaching, she tried to schedule chemotherapy for Friday afternoons after class to give her time to recover before returning to school on Mondays.

There was one hope, her oncologist said the day that he gave her the bone scan results. For the first time Alan and Christy heard the words “bone marrow transplant.”

Over the next few weeks they investigated further, becoming convinced that a transplant was Christy’s best--if not sole--option. From one expert, Dr. Roy B. Jones of the University of Colorado, they heard that the procedure offered as much as a 20% to 30% chance of an outright cure.

Jones also warned that the treatment was highly toxic. It involved extracting a sample of a patient’s bone marrow before administering a course of exceptionally potent chemotherapy, then reinjecting the marrow to revive the dangerously suppressed immune system.

If the intensive chemotherapy failed, it might shorten her life. The total cost of the procedure was high--$100,000 or more. But Jones regarded the alternative as grimmer, telling the couple that “with standard chemotherapy there was no chance of a cure,” Alan recalled. “Every day would be the best day she had because the next day would be a little bit worse.”

Around that time Alan pulled out the booklet detailing the coverage Health Net provided under its contract with the Lake Elsinore schools to make sure the costly treatment was a covered benefit.

“Good news,” he told Christy after reading through the text. “There’s nothing in here that says it won’t be covered.”

In fact, the rejection was in the fine print. Health Net routinely turned down requests for the therapy in advanced breast cancer cases, citing the contract’s exclusion of “experimental” or “investigational” treatments--terms not defined in the document.

Transplants Opposed

The HMO’s position was not much different from what prevailed throughout the health insurance world.

Bone marrow transplants had long been the treatment of choice for leukemia and certain forms of lymphoma. But the insurers were trying to draw the line against its increasingly common use in breast cancer cases. To transplant specialists the reason was clear: Given that the disease is diagnosed in 180,000 American women each year and kills nearly 50,000, the insurance industry knew it would face an enormous bill if transplants moved into the clinical mainstream.

The insurers countered that science, not economics, dictated their position. As they argued, statistical data supporting the treatment’s success--especially against Stage IV, or metastatic, breast cancer--was (and is) open to question. Although some research suggested that transplant patients’ tumors tend to respond more to high-dose chemotherapy than to standard doses, it did not show that this necessarily led to longer median survival rates. Some data even showed transplant patients on average dying sooner than those receiving standard chemotherapy or no treatment at all.

Nevertheless, many oncologists considered transplants a reasonable choice for Stage IV breast cancer patients.

“These women are running away from the dismal results of standard chemotherapy,” Glaspy said, “and this is the most promising next thing.”

At Health Net, very few patients were able to slip through the HMO’s adamant opposition to transplants, usually by raising an enormous legal fuss. To protect itself, the HMO classified those approvals as “business decisions,” not medical judgments, former medical director Leonard Knapp testified in 1993. As long as transplants were not “proven to be effective,” they were denied. And at the existing pace of research, any such proof was years away.

Meanwhile, lawsuits from patients seeking to overturn transplant denials flooded Health Net. As the HMO’s current medical director, William C. Popik, said in a recent interview, “as soon as you say ‘deny,’ the patient becomes a plaintiff.”

Doctors were no more content than their patients with the state of affairs.

“When the question of whether transplants are ‘proven to be effective’ depends on what county you’re in, what state, whether your insurance company has skeletons in its closet and your attorney is smart enough to find them, that has nothing to do with whether you should have a transplant and it’s not a way to make a scientific decision,” Glaspy said.

In late 1992, he proposed a new system to Health Net, which had just awarded UCLA a contract to perform the transplants: create an advisory group of cancer specialists to recommend which diseases warranted transplants and identify those for which the evidence was too scanty.

Not everyone at UCLA welcomed the idea. Some of Glaspy’s colleagues objected that the university would be lending its authority to HMO policies that contradicted its recommendations to patients.

Glaspy responded that only in this way could the doctors gain influence with Health Net that they otherwise lacked. His view prevailed, and when the panel began its deliberations in January 1993, Glaspy and two other UCLA cancer specialists were present, joined by two each from UC San Francisco and Scripps Clinic in San Diego--also exclusive Health Net contractors.

Sequestered for two days in an Orange County hotel, they considered 68 medical conditions, recommending that transplants be routinely approved for 39, covered on a case-by-case basis for 16, and denied for 13. The decisions were collated into a 20-page guide known as the “grid,” which was sent to Health Net administrators and to doctors around the state.

Glaspy considered the grid a great step forward. Not only was Health Net’s policy now clear, it was even committed to provide transplants in some cases it had traditionally rejected. On the other hand, one condition for which Glaspy had argued was still marked “denied”: Stage IV metastatic breast cancer.

Still, he considered himself ethically bound to support the entire grid, even if he disagreed with this one element. That commitment would come back to haunt him, for Christy deMeurers was about to become his patient.

Referred to UCLA by her Riverside County oncologist, and determined to undertake the treatment, Christy first met with Glaspy on June 25, 1993.

Glaspy took Christy’s complete medical history, but there were a few cogent facts he did not learn. These included that the DeMeurerses were Health Net members, that the HMO had already denied Christy’s request, and that they had hired counsel--Mark Hiepler, a young lawyer from Oxnard whose sister, Nelene Fox, had also been denied a transplant by the same HMO for the same disease. (In 1994, Hiepler would become celebrated as an HMO-slayer after winning an $89-million damage judgment from Health Net in his sister’s case.)

To this day, Glaspy believes that the DeMeurerses withheld the name of their HMO on instructions from Hiepler, who was trying to get a court order to force Health Net to pay for the transplant.

But Alan says they identified themselves as “self-pay” on a UCLA questionnaire only because Health Net had already denied the treatment and they were planning to raise the money themselves. But he also says he is “absolutely convinced . . . that if Dr. Glaspy knew we were Health Net (members), he would have tried to talk us out of it.”

Glaspy denies that. “The Health Net panel didn’t affect what we recommended to patients,” he said later. “And I didn’t feel obligated to implement what the panel said.”

Health Net, however, clearly expected doctors--and especially members of its own panel--to take the grid as gospel.

“Our commitment,” says R. Clifford Ossorio, a former Health Net vice president who oversaw the panel, “was that we would not deny anything on the grid, and they would not try to get us to pay” for anything outside the grid--such as Stage IV breast cancer.

Doctor’s Dilemma

When Glaspy learned at his second meeting with Christy that she was indeed a Health Net member, he instantly recognized his dilemma. Among other things, panel members had pledged to serve as expert witnesses on Health Net’s behalf in litigation over the grid. But as Christy’s doctor, he was equally bound to advocate for her--in court, if necessary.

He now says he should quickly have found her another doctor. At the time, however, he was concerned that breaking off their developing doctor-patient relationship might hinder her treatment. In the end, reasoning that “the grid was never meant to be without an appeal,” he decided to press Health Net to cover the transplant.

Meanwhile, he started the treatment. The DeMeurerses had raised $17,000 privately, enough for the bone marrow harvesting, the procedure’s first stage. On the understanding they would eventually raise the balance, Glaspy’s department extracted a marrow sample from Christy’s hipbone and froze it for later reinfusion.

At that point, Glaspy’s quandary intensified. Hiepler was pressing him for a legal declaration supporting Christy’s lawsuit seeking coverage from Health Net. Health Net’s lawyers wanted a similar document certifying that transplants for Stage IV breast cancer were “unproven.”

Trying to advocate for his patient without undermining the grid, Glaspy eventually produced two opposing declarations artfully worded to avoid directly contradicting each other.

For Hiepler he stated on Sept. 9 that high-dose chemotherapy was “promising” and if Christy were to get the treatment it should be done without delay. For Health Net on Sept. 16 he produced a declaration calling it “unproven” and noting that a majority of the HMO’s transplant panel considered it “not of established efficacy”--without stating how he voted.

Between those dates, however, something happened that forever muddied the waters of the DeMeurers case. On Sept. 10--after the first declaration but before the second--Health Net’s Ossorio called Glaspy’s boss, Dennis Slamon, chief of UCLA’s division of hematology/oncology.

What they discussed is disputed. Slamon recalls Ossorio asking why Glaspy was recommending a transplant for a Stage IV patient despite UCLA’s commitment to supporting the grid. He says he was “struck” by Ossorio’s curiosity, but decided entirely on his own to “look into” the case.

As for Ossorio, he contended in a recent interview that his intention was merely to smooth ruffled feathers at UCLA.

“I had heard vibes that UCLA was upset at our denial,” he said. “You might interpret that my saying you’ve got to straighten this out was a threat that we were going to pull our business, but it was more a statement that we had to work with each other.”

In any event, Ossorio’s call provoked Slamon and Glaspy into a “huge fight,” as Glaspy recalls it. When Glaspy revealed that Christy’s marrow had been harvested but she had not raised enough money to finish the treatment, Slamon told him UCLA was “morally” bound to pay for her transplant. In Slamon’s view, the very act of harvesting represented a pledge to complete the treatment, come what may.

“We were in a Catch-22,” Slamon recalled later. “Once they were harvested, what else were we going to do with the cells?”

Glaspy exploded at the decision. Slamon was not a transplanter and “he really didn’t understand . . . that not every transplant came up without a sticky legal question and it wasn’t unheard of for us to harvest before the rest was decided.”

Anguished over the break, Glaspy said, “I went home and wrote a letter of resignation. [He never sent it.] I felt I had cost the division money. I felt [Slamon] had intruded himself. And I didn’t think it would end the problems” with the case.

About that he was correct. Informed by Hiepler of UCLA’s decision to cover the treatment, the DeMeurerses were at first elated. But soon the questions intruded.

“My reaction was, ‘Why on earth isn’t the health insurance company paying for it?’ ” Alan DeMeurers recalled. With the money coming out of UCLA’s pocket, “we were worried we’d get compromised care. How would we know if she was getting the best? There was no standard we could hold them up to.”

Alan DeMeurers today believes his wife did get the best. But it did not save her, for within months after finishing the therapy in October 1993, a bone scan confirmed that the disease had come back. Last March, 17 months after her transplant, Christy died.

Soon after that, weary of the relentless tide of million-dollar lawsuits brought by patients seeking transplants, Health Net changed its procedure. The cases of patients falling outside the grid would be reviewed by an outside agency in Virginia that sends each denial out to three independent experts. If even one rules that the transplant should be performed, Health Net pays for it.

Christy deMeurers might well consider that a victory.

“After Christy got her transplant from UCLA, the question from Health Net was why were we pursuing the case against them,” her husband said recently. “She always replied it was to make it easier for the next person.”