Champions of hope
Patients, researchers are pained by Kennedy's plight but hope he can, like other celebrities, raise awareness of a dire need for funds
Two emotions coursed through Janet Harrington when she heard about Senator Edward M. Kennedy's malignant brain tumor. First, there was an aching sadness. Harrington remembered her late husband's 2 1/2-year, determined battle against the same disease, through three surgeries, several clinical trials, radiation, and memory loss before, ultimately, his death three years ago today. It's a struggle she dreads for any family.
But that sadness evolved to something else: hope.
"People are going to pay attention to brain cancer now," said Harrington, a 50-year-old Brookline after-school coordinator who started a nonprofit, the Neil Harrington Memorial Fund, to raise money for the disease.
Since Tuesday's announcement of Kennedy's diagnosis, hope has been quietly building in the nation's far-flung cancer community that the senator's unparalleled stature and star power might attract more attention to this relatively rare malignancy and push his colleagues in Washington to increase now-static federal funding for cancer research.
Celebrities stricken with various diseases have become powerful fund-raisers and beacons for education and treatment.
Los Angeles Lakers basketball legend Magic Johnson has advocated for HIV/AIDS causes and New England Patriots linebacker Tedy Bruschi has championed stroke awareness. Actor Michael J. Fox has lobbied for Parkinson's treatments and created a foundation, which touts more than $120 million raised for research. And there's cyclist Lance Armstrong, whose battle back from testicular cancer to win the Tour de France inspired legions to sport his bright yellow "Live Strong" rubber wristbands and donate to his foundation. It reports raising $181 million.
Other notable politicians or their spouses have had cancer, including John McCain, John Kerry, and Elizabeth Edwards, and the diagnosis has led some to sponsor legislation to boost screening and treatment options. Last May, North Carolina Representative Sue Myrick, a breast cancer survivor, joined Armstrong and others to unveil a proposed law to expand access to lifesaving treatments.
Still, few bring Kennedy's mix of celebrity and political clout. And the talk in cancer circles is that the man known as a rainmaker in Congress, who has long championed healthcare causes, will put a face on cancer like none before him, opening hearts, doors, and pocketbooks on Capitol Hill, even during the tightest of financial times.
"Brain tumors do not discriminate. This really brings that home to the legislators," said Naomi Berkowitz, executive director of the Illinois-based American Brain Tumor Association.
"Their friend, their colleague has been diagnosed with a malignant brain tumor," she said. "And perhaps they will think kindly about increased funding."
Brain cancer gets much less attention from the public than more common cancers, say advocates. With 21,810 new cases predicted in this country this year, compared with more than 370,000 for breast and prostate cancers combined, less limelight has meant less money for critically needed research, said Harriet Patterson, director of the California-based National Brain Tumor Foundation.
"There have been fewer incentives for drug companies to invest in these smaller cancers. Drug companies want to know if there will be a payoff at the end of the road," she said.
While there is a perception among some advocates that brain cancer has received short shrift in funding, federal numbers show that, when compared with other cancers that have similar numbers of new cases and deaths each year, brain research receives significantly more money.
In fact, the $148 million the National Cancer Institute spent to study brain and nervous system cancers last year was twice what the government spent to research pancreas cancer, a disease that kills almost three times as many Americans.
Part of the reason is that it is "more difficult and expensive to do clinical trials in brain tumors," compared with other parts of the body," said Dr. James Doroshow, director of the Division of Cancer Treatment and Diagnosis at NCI, the government's primary cancer research center.
For the past decade, the institute has made a concerted effort to attract more researchers to study the cancers that have higher mortality rates, such as brain, liver, and pancreatic cancer, he said. That has prompted more to switch to brain research, and the money has followed.
Still, there is growing frustration throughout the cancer community about the overall pace of federal research funding over the past five years. In 1998, the nation made a bold, five-year investment in cancer research, and appropriations essentially doubled, said Dr. Edward Benz Jr., president of Boston's Dana-Farber Cancer Institute.
Since 2003, however, the NCI's budget has not kept pace with inflation. The buying power for research is down about 19 percent this fiscal year, compared with three years ago, Benz said.
"When the budgets are this tight, the decisions about federal funding tend to become more conservative," he said. "The research that is out-of-the-box, but has the greatest potential to make great leaps, is not getting funded because it is inherently riskier."
Days before Kennedy was diagnosed with cancer, Benz testified at a committee hearing chaired by the senator that was aimed at launching a new war on cancer. Now, Benz said, Kennedy's plan to reinvigorate the assault on the nation's second-leading cause of death is likely to receive high-powered attention.
"This is galvanizing people in no other way that I've seen with other prominent people," he said.
The nation now stands at a crossroads in cancer research, say scientific leaders.
With 15 successive years of declining death rates from the disease, more lives are being saved than ever before, said Dr. John Seffrin, CEO of the American Cancer Society. But as the nation's population ages, cancer will become more prevalent.
"The overall cancer research portfolio in this country needs to shift toward prevention research, but the big factor that is impeding progress is the lack of funds," he said.
Long before Kennedy was diagnosed with the disease, he helped his colleagues in Congress understand that reducing cancer's toll is as much about public policy as it is about science, Seffrin said.
"He's created a sea change for millions of people in America by speaking out unyieldingly and working to fill gaps," he said. "Now he will focus a bright light on a serious problem: we are underfunding the war on cancer."
Kay Lazar can be reached at klazar@globe.com 