Like almost no one else, Sen. Edward M. Kennedy embodied the frustrations of America’s 40-year war on cancer.
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 Kennedy found 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.
Kennedy’s cancer, a glioblastoma, kills almost everyone who gets it, usually in about a year. Although he got the most aggressive treatment, Kennedy lived just 15 months after his diagnosis — just about the median survival for patients with his type of tumor who get 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. Flamm, who was not involved with Kennedy’s treatment, added that when a patient develops glioblastoma, “there is not a hell of a lot you can do.”
The story of 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 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 Kennedy, who sought treatment at Duke University Medical Center in North Carolina, travel in search of cutting-edge care, there is a limited repertoire of treatments that have been shown to help.
Yet the cost is high. Estimates from experts vary 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 Kennedy — who had insurance as a senator, was eligible for Medicare, and was personally wealthy — cost was never an issue.
The bright side is that median survival time for glioblastoma patients has more than tripled in the past 40 years, from about 18 weeks to about 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 in New York.
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.
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 Kennedy became a leading legislative supporter, setting off a tug of war between him and 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, 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 Kennedy’s name was not on the bill, a condition that Kennedy accepted, wrote Adam Clymer, a biographer of Kennedy. In December 1971, Nixon signed the cancer bill.
On May 20, 2008, Kennedy announced that he had cancer. He’d had a seizure three days before and been diagnosed with glioblastoma.