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Who Decides?

Len Rodberg in his apartment, with a photo of his late wife
Kate Milford

Joanne Lukomnik was a fan of managed care, at least in its earliest forms. "She believed in the ideals," says Len Rodberg, a health policy expert who married Lukomnik in 1979. As a physician and advocate for the poor, Lukomnik was enthusiastic about managed care's potential to ward off illnesses. What she didn't foresee was the way market-driven managed care companies might end up with the power to make life-and-death decisions for patients. As she learned firsthand, people with critical illnesses stand to lose the most when insurance companies are put in charge of health care.

In 1994, Lukomnik learned she had multiple myeloma, a rare cancer that attacks the bone marrow. Though at first she had no symptoms, the doctor understood her chances: patients with myeloma live an average of three to five years past their diagnosis. So, after a year's worth of standard drugs failed to slow the progression of the disease, Lukomnik and her physicians decided on a more aggressive and controversial therapy. She would have her bone marrow removed and the cancerous cells in it killed. Then she would undergo extremely high doses of chemotherapy and, afterward, have the marrow replaced. The idea was that, once back in the body, the treated cells would create new, healthy bone marrow.

In the best of situations, autologous bone marrow transplants (ABMT), as such treatments are called, can extend the life of a myeloma patient by as much as 10 years. If Lukomnik had lived that long, she might have seen her two children into adulthood— and perhaps even have stayed alive until a better treatment or a cure came along. More often, however, the remission period is much shorter. ABMT is also invariably harsh and painful: high doses of chemotherapy weaken the immune system, leaving transplantees susceptible to all kinds of infections. Sometimes, in fact, the treatment itself can kill the patient.

Given the extremity and relative newness of ABMT (the first transplant was performed on a myeloma patient just 12 years ago), it wasn't surprising that Lukomnik's insurance company, Empire Blue Cross Blue Shield, denied her request for coverage on the grounds that the treatment was experimental. Nor was it a surprise, however— given her training and desperation— that she challenged the denial. Armed with a thick pile of literature supporting the effectiveness of ABMT, she took on the company's medical director and had the decision overturned within days.

As an otherwise healthy woman in her late 40s, Lukomnik had the best chances for success with ABMT a myeloma patient could hope for. But in less than two months it was clear that the treatment, which had cost about $150,000 and left Lukomnik weakened and bald, was not working. Within two years, she was considering another marrow transplant, this time using other drugs. This second round was an even longer shot than the first, since after one bone marrow transplant fails, the chances another will succeed— even with different types of chemotherapy— are slimmer.

Again, Empire denied Lukomnik's request for coverage of the marrow transplant. Lukomnik appealed, and the matter was turned over to a panel of outside experts, which confirmed the denial. In fact, it wasn't until Lukomnik pulled the strings she'd gotten access to through a lifetime of working as a doctor and health advocate that she made any headway.

According to Rodberg, his wife— who, by this point, was so weak she couldn't get up from the couch in their Upper West Side apartment— used her last days to orchestrate a political campaign to have her transplant approved. At her direction, Rodberg hired a lawyer and called the offices of State Assemblyman Dick Gottfried, Congressman Jerry Nadler, and City Comptroller Alan Hevesi (for whom her brother worked) to ask for their help.

Just hours after Rodberg made the calls and at least one of the people he called— Alan Hevesi— in turn made calls to Empire's offices, the company decided to reverse its decision and pay for the transplant. Though that about-face took place just hours after the company issued a denial letter stating that Lukomnik's "disease has progressed and is unresponsive to treatment," Empire spokesperson Deborah Bohren insists that medical necessity "was the sole basis for our decision."

"Medical necessity" is a term that can mask a complicated calculus, of course. As Lukomnik and her husband saw it, the company might well have been arguing that it was now too expensive to try to prolong her life. Or perhaps the company simply thought that her chances of success were too slim. But the two didn't feel comfortable having the insurance company abandon hope for them.

As it turned out, Lukomnik and Rodberg would spend many of the last days of her life fighting simply for the right to make decisions about her treatment with their doctors. When she finally managed to wield enough influence to have a say in her own care— something poorer or less powerful patients might not have been able to do— the couple began their discussions in earnest. But they were out of time. On April 20 of this year, Lukomnik died of her cancer.

 

in the months since her death, Rodberg has continued to mull over what his wife's case says about the current state of health care. He is working with the American Public Health Association updating draft legislation that would give decision-making authority back to patients and doctors. And his experience influences the course he teaches at Queens College. "I used to have theory and other people's anecdotes," says Rodberg. "Now I know what it's like to be told your wife is expendable."

In his view, the shift in authority has been momentous. "Ten years ago our doctor would have decided what treatment was needed, and it would have been done." In those good old days of traditional health insurance, if there were disputes, they were likely to be over invoices the company refused to pay long after the actual work was done. Now, says Rodberg, "managed care companies say, 'You're not going to get the care,' because they tell the doctor ahead of time he's not going to get paid."

Difficult questions about how aggressively to treat fatal diseases have been around since before managed care, of course. But awful as these decisions are to make for oneself or a loved one, they are necessarily more difficult— and more suspect— coming from a bottom line­oriented company. As Rodberg sees it, Empire could not have the same passion to save his wife that he did. "Surely the numbers on the pieces of paper our doctor sent to our insurer did not describe my wife, what her real life condition was, and what further contributions she could make to all of us in the years she would be given."

Some would say that a dispassionate approach to medical decisions is actually fairest. But, because of the unpredictable nature of medicine, even the most evenhanded, scientific attempts to assess treatments are plagued by uncertainty; you just can't always foresee what will help or when.

Within this gray area, the persistence and political power of patients seem to hold disturbing sway. Indeed, if decisions about Lukomnik's treatment were influenced by her pressure tactics and other decidedly nonmedical factors, it wouldn't have been the first time.

Mark Scherzer, the health insurance lawyer who represented Lukomnik in her appeal, says calls from influential people "often work in those kinds of situations." And a 1994 study in the New England Journal of Medicine found that approval of ABMT requests made by breast cancer patients in managed care plans is "arbitrary and capricious." The study looked at 533 requests for coverage of such transplants. Almost a quarter of those were denied though, according to the authors, the decisions bore no relation to the patients' conditions. And many of those initially denied were able to overturn the decisions simply by hiring a lawyer.

But if lawyers can help change an insurance company's decision to approve a treatment, they can do little to hold companies accountable after the fact. Because of federal and state laws, managed care companies are mostly immune from malpractice lawsuits. Nevertheless, public mistrust of managed care's role in handling last chance therapies has been vented in other ways. In a 1993 case that did make it past the legal loophole, the estate of a woman who died of breast cancer was awarded $89 million after suing a California HMO for denying coverage for ABMT. And the state of California recently passed a law guaranteeing terminally ill people the right to independent review of treatment denials.

Managed care companies themselves are actually uncomfortable with their enormous, unchecked power. Several insurers have made efforts to remedy the apparent conflict of interest between cutting costs and making decisions solely based on medicine. Empire, for one, asked a consulting firm to create a panel of experts to review its decisions— and that panel ruled against Lukomnik. According to Bohren, Empire was aiming to "add credibility to a process people didn't believe in." (Since Lukomnik's death, Bohren says, Empire has heeded updated medical advice and begun approving most requests for ABMT in myeloma cases almost immediately.)

Such efforts don't necessarily address the larger problem of how to direct resources toward the care of terminally ill people. According to James Sabin, a health ethicist who codirects the Center for Ethics and Managed Care at Harvard Medical School, Americans are uncomfortable with leaving monumental life and death decisions in the hands of for-profit companies. And yet we're also uneasy about acknowledging that financial limits are put on medicine, which is getting ever more high-tech and costly. "There are more good things that could be done in the realm of health care than we are going to be able to afford to pay for," says Sabin.

 

Rather than discussing these financial constraints openly— and deciding as a society on the lengths to which we will go to save lives, Americans have let companies set the limits. Says Sabin: "We've asked market-based entities— insurers and managed care organizations— to address what are really moral and ethical issues." Those companies avoid public discussion of how money might factor into their health care decisions, "but they ration implicitly all the time."

For Rodberg, that amounts to a corrupt way of providing health care. As someone who loved Joanne Lukomnik, he would have done anything to save her. Empire workers, as he sees it, necessarily had another, colder perspective. "How easy it must be, facing only numbers on a page, to turn down procedures that would save a life and, instead, save the company money and look forward to that big bonus at the end of the year."

slerner@villagevoice.com


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