6月3日に手術を選択してデューク大へ向かい、３時間半の手術を受けた。主治医は“successful”と言ったが success と言明しなかった。毎年1,000人の手術が行われるが、ほとんどの脳腫瘍患者は遠方から来るという。フリードマン博士は、「私達が彼らに希望を与えるので」彼らは来ると言う。
皆保険制度への議論 ケネディ上院議員を中心に動く／米国医療事情 オバマ政権
Forty Years' War
Weighing Hope and Reality in Kennedy’s Cancer Battle
By GINA KOLATA and LAWRENCE K. ALTMAN
Published: August 27, 2009
Like almost no one else, Senator Edward M. Kennedy embodied the frustrations of the nation’s 40-year war on cancer.
Mr. Kennedy strongly supported the idea of a war on cancer, promoting it for months before President Richard M. Nixon announced the battle was to begin in 1971, and advocating for more money than Nixon initially wanted to spend.
And when Mr. Kennedy learned he had brain cancer last year, he became one of the millions whose fate was not much changed by the cancer war. Despite billions that have been spent, the death rate from most cancers barely budged.
Mr. Kennedy’s cancer, a glioblastoma, kills almost everyone who gets it, usually in a little over a year. Although he got the most aggressive treatment, Mr. Kennedy lived just 15 months after his diagnosis ― just about the median survival for patients with his type of tumor who got the radiation and chemotherapy regimen that has become the standard of care.
“This remains just a dreadful tumor,” said Dr. Eugene S. Flamm, a neurosurgeon at Montefiore Medical Center in New York. Dr. Flamm, who was not involved with Mr. Kennedy’s treatment, added that when a patient developed glioblastoma, “there is not a hell of a lot you can do.”
The story of Mr. Kennedy’s battle with glioblastoma is one that raises questions of hope and reality and of how much the health care system should pay for hope. As has happened with most cancers in the nation’s 40-year war on cancer, progress on glioblastomas has been incremental. With these deadly brain cancers in particular, the disease remains poorly understood. And even though many patients, like Mr. Kennedy, who sought care at Duke University Medical Center, travel looking for cutting-edge care, there are limited options for treatment that have been shown to help.
Yet the cost is high. Estimates of the total cost from experts at various medical centers range from $100,000 to $500,000.
“If you have the insurance to come to Duke, no problem,” said Dr. Henry Friedman, co-director of the brain tumor center at Duke. But if patients are uninsured or underinsured, the situation is different. Then, he said, “we will work with their home physician to give them our expertise.”
Of course, for Mr. Kennedy, who had insurance as a senator, was eligible for Medicare and was personally wealthy, cost was never an issue.
“My wife, Vicki, and I have worried about many things, but not whether we could afford my care and treatment,” he wrote in Newsweek.
The bright side is that median survival time for glioblastoma patients has more than tripled in the past 40 years, from about four and a half months to 14 or 15 months today. And there are now a few rare patients who live four, five or six years. “We never saw that before,” said Dr. Lisa M. DeAngelis, chairwoman of the department of neurology at Memorial Sloan-Kettering Cancer Center.
Those extra months are mostly good quality life, said Dr. Mitchel S. Berger, chairman of neurosurgery at the University of California, San Francisco.
But few are sanguine.
“In no way do I want to come off making it sound like we’ve done a great job,” said Dr. Howard A. Fine, chief of the neuro-oncology branch at the National Cancer Institute.
Mr. Kennedy was extensively involved in the efforts to combat cancer. In the late 1960s, Mary Lasker, a Manhattan philanthropist, was campaigning for an all-out war on cancer and Senator Kennedy became a leading legislative supporter, setting off a tug of war between him and President Nixon for political credit.
In his State of the Union address in January 1971, Nixon proposed the likes of a Moon shot program to conquer cancer. In response, Mr. Kennedy advocated an even larger research budget and a boost in status for the National Cancer Institute. Nixon signaled that he would support those ideas, as long as Mr. Kennedy’s name was not on the bill, a condition Mr. Kennedy accepted, wrote Adam Clymer, a biographer of Mr. Kennedy and former reporter for The New York Times. In December 1971, Nixon signed the cancer bill.
On May 20, 2008, Mr. Kennedy announced that he himself had cancer. He had had a seizure three days before and been diagnosed with glioblastoma, the most common and most deadly of brain tumors, at the Massachusetts General Hospital. Ten days later, more than a dozen brain cancer experts met to discuss his treatment.
Everyone agreed that Mr. Kennedy should have the standard regimen of chemotherapy and radiation. Radiation had been standard since 1978, when a rigorous study showed it could extend survival to 36 weeks. Without radiation, median survival was 14 weeks.
In 2005, glioblastoma therapy had another advance. Radiation had improved ― it was targeted to the tumor and not directed at the entire head, and patients were living longer, about a year. Then, a rigorous study found that if a drug, temozolomide, was added to radiation, median survival time was 14.6 months. That drug plus radiation became the standard of care.
The disagreement about Mr. Kennedy was over surgery. Ordinarily, if a tumor can be removed, it is removed when surgeons take tissue for a biopsy. Of course, Dr. DeAngelis says, even then, there is some tumor left behind.
“It may be microscopic, but we all know it’s there,” she said.
Mr. Kennedy’s tumor was diffuse, covering a large area, and his doctors at Massachusetts General had not tried to take it out when they removed tissue for biopsy. Some in the conference argued that the senator should have no further surgery. Others said he should.
Mr. Kennedy was in the middle of a common medical dilemma ― doctors who disagree. At this point, with no definitive data, most have made up their minds for or against surgery in such cases, Dr. Fine said. In fact, doctors are so set in their opinions on this issue that most would be unwilling to suggest that patients enter a study in which their treatment ― surgery or no surgery ― would be decided at random.
“We’ve been talking about doing a clinical trial for 20 years,” Dr. Fine said, but, he added, it probably would be impossible to get patients. “Since there are no hard data, it becomes an issue of individual physician bias.”
Mr. Kennedy was apparently convinced that surgery might help. He flew to Duke for a three-and-a-half-hour operation on June 3. His doctors said it was “successful” but did not define success.
He was far from the only glioblastoma patient to travel to Duke. Most of the 1,000 new brain tumor patients treated there each year come from distant places, Dr. Friedman said.
They come, Dr. Friedman said, “because we give them hope.”
“If you go to the Internet and do a search on outcomes in glioma, everyone will call it a terminal illness,” he said, referring to the class of brain tumors that include glioblastomas. “Your outcome is ‘dead on diagnosis.’ If you don’t have the philosophy that you can win, you have lost before you started.”
Others say there was nothing extraordinary about the treatment Mr. Kennedy got at Duke.
“I believe he received the standard of care,” said Dr. Raymond Sawaya, chairman of the department of neurosurgery at M. D. Anderson Cancer Center and one who was part of Mr. Kennedy’s initial medical conference and argued against the surgery.
And while care for glioblastoma has steadily improved, experts agree that, as Dr. Mark Gilbert, a professor in the department of neuro-oncology at M. D. Anderson, put it, glioblastoma remains “a scary, grim disease.”
Forty years ago, when the war on cancer began, patients had minimal surgery, if any, Dr. Berger said. That was sometimes followed by radiation to the entire brain, which caused “tremendous cognitive defects within months.” Some also got a chemotherapy drug like carmustine. But the chemotherapy was not very effective. A paper published in 2003 in the Journal of Clinical Oncology stated that “the effect of chemotherapy on this disease has been minimal.”
But while chemotherapy did not improve until 2005, surgery and radiation began improving about 20 years ago. The advent of M.R.I.’s meant that surgeons could see exactly where a tumor was and carefully plan operations. And doctors learned to target radiation to small areas. Mr. Kennedy’s ability to function, Dr. Berger said, “would have been very different if he had gotten the standard treatment 30, 40 years ago.”
Now, most major medical centers offer the same treatment: surgery, if the tumor can be safely removed, chemotherapy, radiation, and a new drug, Avastin. Yet glioma specialists say it is common for patients to travel, often long distances, to get what they hope will be the most aggressive care.
“That is almost part of the American culture as it relates to health care,” Dr. Berger said. “We feel empowered to go anywhere we want for the most part.”
These days, with a focus on controlling health care costs, it might seem that limiting patients’ options and restricting treatments that add maybe a few months of life might be a good place to start. But health economists say that would be a terrible idea.
“We are all in favor of eliminating waste,” said Mark Pauly, a professor of health care management at the Wharton School at the University of Pennsylvania. “But when it’s your life that’s on the line, you tend to behave quite differently.”
“The economist in me says, If you want to save money, this is probably a good place to take it from,” Dr. Pauly said. “The human being in me says, I don’t want to do it.”
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