Who Decides?

The struggle over last-chance medical treatments

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.

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

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.

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