Kennedy Case Shows Progress And Obstacles in Cancer Fight
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.”
and to note, the 'Real Choice? It’s Off Limits in Health Bills' piece that is the second item in the post to which this post is a reply also has embedded links, and see the 'Related' items linked there
Michael Steele speaks on Jan. 30, 2009, in Washington after being elected Republican National Committee chairman. Reuters/Molly Riley
Healthcare reform has brought back the right's favorite wedge issue -- government handouts for the "undeserving"
By Ed Kilgore
Aug. 31, 2009 | The healthcare reform debate took a rather remarkable turn last week when the Washington Post published an Op-Ed piece [ http://www.washingtonpost.com/wp-dyn/content/article/2009/08/23/AR2009082302036.html ] by Republican National Committee chairman Michael Steele telling retirees that his party would fight any effort to modify the benefits they derived from the government-run Medicare program in order to offer similar benefits to others. The Op-Ed was immediately supplemented by an item on the RNC Web page trumpeting a "Seniors' Health Care Bill of Rights [ http://www.gop.com/News/NewsRead.aspx?Guid=bc1d50c0-5ef7-4026-8db5-efd402b01677 ]," similarly pledging the GOP to a to-the-death defense of Medicare benefits and procedures, allegedly under dire threat from universal health coverage.
But in all the well-deserved mockery of Steele, what went largely unnoticed was his implicit attempt to stoke resentment of the uninsured by the insured – more specifically, those insured by what Republicans normally call "socialized medicine." He referred to retirees, present and future, as "the greatest generation" (a rather anachronistic reference since today's 65-year-olds were actually born in 1944) whose right to exactly those Medicare benefits they currently receive should not be sacrificed to Obama's "healthcare experiment." At another point, Steele suggested that Democrats were trying to ration healthcare so as to make procedures less available to seniors, and more available to "young and middle-aged people."
After many months of conservative claims that Barack Obama and the Democratic Party are determined to engineer a "government takeover" of the private sector in order to "redistribute" income, Steele is upping the ante to suggest that Obama wants to redistribute healthcare – and perhaps even the opportunity to take another breath – as well.
This should be familiar to any political observer over the age of 30 as a new version of the old "welfare wedge": the emotionally powerful conservative argument that Democrats want to use Big Government to take away the good things of life from people who have earned them and give them to people who haven't.
The "welfare wedge" largely disappeared from national political life in the wake of the 1996 welfare reform initiative that eliminated any federal entitlement to cash assistance for families, imposed a work requirement for temporary assistance, and generated, for a while at least, a massive reduction in "welfare" caseloads.
It returned during the latter stages of the 2008 presidential campaign [ http://www.thedemocraticstrategist.org/strategist/2008/10/the_new_welfare_queens.php ], when conservative gabbers and ultimately the McCain-Palin campaign attacked Barack Obama's tax proposals as a "redistributive" effort to offer "welfare" by boosting the refundable Earned Income Tax Credit – by definition eligible only to families with earned income and stiff payroll tax liability. This was interesting not only because the EITC had long been a staple of conservative social policy, but because previous efforts [ http://www.thedemocraticstrategist.org/strategist/2008/10/im_not_bush_im_tom_delay.php ] to call refundable EITC payments "welfare" had been denounced by George W. Bush and John McCain.
After the election, the "welfare" treatment of Obama's tax policies was echoed by similar conservative rhetoric about proposals to help homebuyers getting hammered by the mortgage and real estate collapse. Most famously, CNBC financial reporter Rick Santelli became a right-wing folk hero for a rant [ http://www.thedemocraticstrategist.org/strategist/2009/02/fury_of_the_winners.php ] about the injustice of being asked to help the "losers" who took out mortgages they should have known they couldn't pay. This was at about the same time as Republican members of Congress began handing out copies of Ayn Rand's "Atlas Shrugged [ http://washingtonindependent.com/32415/congressman-were-living-in-atlas-shrugged ]," with its prophecy of a dystopic society in which socialist "looters" and Christian "altruists" had brought the United States to its knees, and some conservative agitators began urging "productive" Americans to emulate Rand's plutocratic heroes by "going Galt [ http://opinionator.blogs.nytimes.com/2009/03/06/going-galt-everyones-doing-it/ ]" and refusing to contribute to the welfare state. The "tea party" movement that ramped up in opposition to Obama's economic stimulus proposals was heavily freighted with this sort of revolt-of-the-producers attitude.
Unsurprisingly, the new "welfare wedge" has been very evident in the opposition to healthcare reform, even before Michael Steele made it clear that "socialism" for "the greatest generation" was worth defending so long as it wasn't extended to the currently uninsured.
What's most interesting, and dangerous, about the new "welfare wedge" is that it's not about poor people who don't work for a living. After all, most very poor families often already have health insurance (depending on where they live) via Medicaid, and those who don't work these days generally don't have the option of working. The target of "welfare" shouters seems to be the working poor, or middle-class minority families who are struggling to stay in the middle class.
And that brings me to the most difficult issue: It's really hard to say how much race has to do with the new "welfare wedge." It was certainly central to the old one. It's hard to ignore that the angry protesters at tea party and town hall protests are virtually all white. You can't ignore Obama's own race, or the attacks on both the president and the first lady as "black nationalists." And the ongoing conservative obsession with ACORN [ http://www.dailykos.com/storyonly/2009/4/12/718102/-ACORN-And-Conservative-Paranoia ], a minority-oriented (if marginally significant) grassroots advocacy group – an obsession that has played a central role in every right-wing attack on the Obama agenda before and after the 2008 elections – is significant.
But you don't have to be a liberal, or a Democrat, or an Obama supporter to be concerned about the return of the "welfare wedge" and with it the savage treatment of hard-pressed working Americans as irresponsible bums who are conspiring toward a socialist society. Many libertarian-conservatives, who view much of the pre-Obama status quo ante as unacceptably "socialist," are probably as disgusted by Michael Steele's Mediscare tactics as I am. But we need to get these tactics out into the open and expose them for what they are.
Ed Kilgore is the managing editor of The Democratic Strategist [ http://www.thedemocraticstrategist.org/ ]. Previously, he was a federal-state relations liaison for three governors of Georgia, and served as communications director and legislative counsel for U.S. Sen. Sam Nunn.
President Obama, Vice President Joe Biden and House Speaker Nancy Pelosi react to Rep. Joe Wilson's (right) outburst in Congress last week. CNN screengrab and AP photo
Diversity is healthcare reform's worst enemy. White America has never liked social insurance for people of color
By Michael Lind
Sept. 15, 2009 | Now and then a moment occurs that clarifies the nature of American politics like a flash of lightning over a prairie landscape. Such a moment occurred on Sept. 9 during President Obama's televised address to a joint session of Congress about healthcare. As the president explained that illegal immigrants would not be eligible for benefits under the plan he supported, Joe Wilson, a conservative Republican member of Congress from South Carolina, shocked the chamber and the television audience by shouting, "You lie!"
Set aside the rich symbolism of the fact that the nation's first black president was rudely challenged by a conservative politician from South Carolina, the most radical of the antebellum Southern slave states, the home of John C. Calhoun, theorist of states' rights and slavery, the place where the first shot of the Civil War was fired at Fort Sumter. In a blazing moment the incident illuminated the continuing entanglement of the politics of race and the welfare state in America.
The American social insurance system is minimal compared not only to the countries of Scandinavia and continental Europe but also to other English-speaking nations like Britain and Canada, both of which have universal healthcare programs. In 2008, the U.S. spent only 19 percent of GDP on social programs, compared to nearly 30 percent in both Sweden and France.
From the beginning, attempts to create a universal welfare state in the U.S. have been thwarted by the fears of voters that they will be taxed to subsidize other Americans who are unlike them in race or ethnicity or culture. The original Social Security Act passed only after domestic workers and farmworkers -- the majority of black Americans, in the 1930s -- were left out of its coverage, at the insistence of white Southern politicians. Aid to Families With Dependent Children, a New Deal antipoverty program that became identified in the public mind with nonwhite "welfare queens," was a target of popular resentment for half a century before it was finally abolished by the Republican Congress and President Bill Clinton in the 1990s.
Racial resentments undoubtedly explain the use of "redistribution" and "socialism" as code words by John McCain, Sarah Palin and Republican working-class mascot "Joe the Plumber" during the 2008 presidential campaign. Similar themes have surfaced during the healthcare debate. Among the many popular fears that conservative opponents of healthcare reform play upon is the anxiety that elderly working Americans will have their Medicare benefits cut, or might even be encouraged to volunteer for euthanasia, to subsidize healthcare for the country's 12 million or so permanently resident illegal immigrants: "Kill Grandma to pay for Pedro."
The stereotype of the welfare-dependent Latino illegal immigrant appears to have replaced the black inner-city welfare recipient as the "other" in the imagination of many Americans suspicious of further expansion of the federal social insurance system. This explains Rep. Wilson's outburst that President Obama had to be lying when he said that illegal immigrants would not benefit from healthcare reform. Another conservative Republican named Wilson, former California Gov. Pete Wilson, prospered politically from the native white backlash against welfare for illegal immigrants in California in the early 1990s, although the Republican Party subsequently suffered from alienating the state's growing Latino electorate. The Austin Lounge Lizards said it best, in their song "Teenage Immigrant Welfare Mothers on Drugs":
All those teenage immigrant welfare mothers on drugs (They're on the Dole) Teenage immigrant welfare mothers on drugs (They're speaking espanol)
Since the 1964 Civil Rights Act destroyed formal white supremacy in the U.S., every attempt to expand traditional social insurance in America has failed. Meanwhile, there has been a massive expansion in government-sponsored welfare going disproportionately to the white and affluent. What the political scientist Christopher Howard calls the hidden welfare state includes the tax-favored employer-provided health insurance that most working-age Americans depend on, as well as the home mortgage interest deduction and the childcare and child tax credits. Affluent and educated workers are more likely to work for employers who provide private health benefits than are low-skilled workers and employees of small businesses. Personal tax benefits like the home mortgage interest deduction are available only to the top half of households who pay federal income taxes, and are unavailable to lower-income workers who pay payroll taxes but no income taxes. In many cases, the benefits of this tax-credit welfare state increase with income.
There is even a nonrefundable "childcare tax credit" available only to the relatively affluent families who pay income taxes in addition to payroll taxes. There's no publicly provided or subsidized daycare to help out the nanny who takes care of the rich brat, but the taxpayers subsidize the rich brat's parents when they employ the nanny.
Is it a coincidence that following the Civil Rights Act white Americans stopped expanding the traditional welfare state and instead started building a private, income-based welfare state for themselves? Could it be pure coincidence that the most generous welfare states in the world have been those of ethnically homogeneous Nordic countries where, until recent immigration, nearly everyone was related to everyone else? Is the classic welfare state really a form of ethnic nepotism most likely to be adopted by a homogeneous, indeed tribal, nation-state?
Recent scholarship supports the hypothesis that ethnic diversity tends to be inversely correlated with generous, universal social insurance. In a 2001 paper titled "Why Doesn't the US Have a European-Style Welfare State?" Alberto Alesina, Edward Glaeser and Bruce Sacerdote wrote that "race is critically important to understanding the US-Europe differences" and that "hostility to welfare comes in part from the fact that welfare spending in the US goes disproportionately to minorities."
Social Security and Medicare, the two major examples of universal social insurance in the U.S., were enacted during a half-century between World War I and the 1970s when the foreign-born percentage of the U.S. population was at an all-time low and ethnic differences were fading rapidly in a white majority that made up a secure nine-tenths of the population. Arguably a sense of post-ethnic, pan-white nationalism, combined with a small nonwhite majority consisting almost entirely of African-Americans, is one of the reasons, if not the major reason, that the U.S. came closer to European social democracy between 1932 and 1968 than in the periods of greater immigration and cultural heterogeneity that came before and afterward.
The tension between diversity and solidarity is a problem for both wings of the Democratic Party in the United States. In an increasingly diverse society with population growth driven by immigration, it will be even harder for the social democrats on the left wing of the Democratic Party to persuade the dwindling number of native white voters of the merits of universal policies that could benefit both them and the newcomers. But if immigration-driven diversity dooms ambitious plans for social democracy in America, it may be an even greater obstacle to the less expensive, targeted, means-tested programs favored by centrist Democratic neoliberals. After all, means-tested programs by design would exclude most of the white working and middle class, and benefit the nonwhite, increasingly foreign-born working poor even more visibly than universal programs, at even greater cost in their political viability.
Is there any way out of this trap for liberals who wish to preserve (as I do) a relatively generous legal immigration policy, even though the diversity that results continues to undermine support for redistributionist social insurance and safety net programs? Maybe. The solution may be corporatism or corporate paternalism -- by which I mean the mandatory universalization of private employer benefits. If the politics of ethnic diversity makes movement in a universalist, social democratic direction impossible in the U.S., then the alternative might be to mandate that all employers provide certain benefits to all employees, with no exceptions. The costs of such unfunded mandates might drive some small businesses out of existence. But small-business owners are the most vocal opponents of wage and benefit reform in the U.S. The replacement of Scrooge & Marley by a smaller number of bigger private and public employers who treat Bob Cratchit and Tiny Tim better would not necessarily be a tragedy.
What Winston Churchill said about democracy can be said about the welfare state as well. In a country as pluralistic as the U.S., liberal corporatism may be the worst kind of welfare system, except for all the rest.
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