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Cancer Patient Seeks Caring in Immune System

November 24, 1997|SANDRA G. BOODMAN | THE WASHINGTON POST

One day Evan Handler was a 24-year-old understudy in a Broadway hit, a professional actor with a promising career who was poised to embark on the national tour of a Neil Simon play. The next day he was patient number 865770 at Memorial Sloan-Kettering Cancer Center in New York, a terrified and very sick man "thrown into a world I didn't even know existed." During the next three years, Handler said, he became the recipient "of some of the very best and the very worst health care our nation has to offer."

Now 36, Handler has survived acute myelogenous leukemia--twice--as well as several harrowing courses of aggressive chemotherapy with its myriad life-threatening side effects.

In 1988, Handler left Sloan-Kettering, where he was being treated for the second time, and went to Johns Hopkins Hospital in Baltimore. There he received what was then a highly experimental and extremely risky new treatment: an autologous bone-marrow transplant.

The cancer has not returned, and Handler is considered to be cured of a cancer that, when he was diagnosed 12 years ago, was considered incurable.

Since then, Handler has resumed his acting career--he appeared last year in the Mel Gibson movie "Ransom"--and has written a searing, passionate and ironic account of his experiences titled "Time on Fire: My Comedy of Terrors" (Henry Holt, 1996), based on Handler's one-man off-Broadway play of the same name. Its premise, Handler said, is that "the truly horrible and the hysterically funny [can] exist right next to each other."

That was the theme of his 90-minute appearance recently in Washington before an unusual audience: nearly 4,000 physicians and medical practice administrators who attended the Medical Group Management Assn.'s annual convention.

Handler's performance, which received a standing ovation, was a striking departure for a conference that focused on topics such as "positioning," "vertical integration" and "physician extenders"--the new parlance of the business health care has become.

And that, said conference chairwoman Ann C. McFarland, is what made Handler's perspective as a patient advocate necessary.

"We in health care get so wrapped up in making the process work that we forget the recipient--the patient," said McFarland, vice president of a medical practice management company in Los Angeles. "I've been a patient myself for a serious illness, so I can empathize. Too often, we forget the patient, and Evan Handler reminds us of that."

In vivid and unsparing terms, Handler recounted his first day at Sloan-Kettering, a hospital he and his parents chose because of its august reputation and its proximity to their homes.

"I expected to be treated as someone who was in great emotional pain and about to undergo great physical pain as well," recalled Handler. "And that's exactly how I was to be treated--New York style."

He recounted his admission: the young intake clerk who scowled furiously as she fired unintelligible questions in his direction without looking at him; the hordes of sick patients attached to dilapidated IV poles packed into grim waiting rooms where they sat passively for hours waiting for a test or a doctor.

Handler described his initial meeting with his oncologist, who assiduously avoided eye contact and who "seemed terribly uncomfortable being around anyone who's sick." He said the attending doctor tossed a sheaf of informed-consent forms for an aggressive and experimental chemotherapy protocol on Handler's bedside table without explanation and then waited impatiently for his signature, saying treatment couldn't start until the forms were signed. When he endured the first round with relative ease, he said his oncologist, rather than being encouraging, seemed inexplicably irritated.

"I was constantly being sent for tests with no warning or information provided to me," he recalled. "A nurse would simply arrive in the room and announce that they were 'ready for me.' And I was expected to go. If I asked why a test was needed, I was told that it was needed because they wouldn't treat me without it."

When he returned home after a month in the hospital, Handler found an $83,000 bill from the hospital waiting for him. The bill was stamped with the ominous warning: "Your account is now overdue. Please remit in 10 days or your account will be turned over to a collection agency."

As his treatment progressed, Handler adopted an approach that was markedly different from the passivity he said other patients displayed.

"For every push I got from them," he said of the hospital, "I gave a shove back." He figured out a way to cut what could be a six-hour wait in the outpatient clinic to two to four hours by using a blood bank on a different floor, a feat accomplished, he said, by forging a doctor's illegible signature. "I became a thief," he said. "I collected stolen moments in the hope that they would add up to an extra day."

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