Shepherd of the Sick
Poor people with cancer, says Harold Freeman, need a guiding hand
The program, Freeman says, was born out of frustration. Here he was at Harlem Hospital in 1967, armed with the best cancer-fighting tools in the world. But by the time he saw many patients, their cancer had progressed beyond reach. "For too many of the people whom I had a responsibility to treat," says Freeman, "I didn't have an answer for them." He looked to the neighborhood for clues. Something about being black and poor was making people die too soon, and its influence began long before cancer cells began to multiply.
Inspiration. Freeman knew he had to do something. His parents had taught him to look out for the underdog, and his Catholic education also provided him with a sense of responsibility toward the less fortunate. He says he's also inspired by his name: A slave ancestor who bought his own freedom called himself Freeman. "I figure if that guy could do that, I have no excuses," he says.
First Freeman set up breast-cancer screening programs. But that still didn't do the trick. "You'd give people the test, but somehow they couldn't get to the next phase." In 1988, Freeman took his quest nationwide as president of the American Cancer Society. He pored over studies and statistics and held hearings. His findings? Many of the barriers were a direct result of poverty. But it's not just inadequate health coverage. Even those with insurance might not have, say, the job flexibility to make it to all the medical appointments a cancer diagnosis demands. Needy patients may also lack knowledge about the importance of quick follow-up of a suspicious screening result.
Freeman imagined himself adrift on the sea in a small boat, trying to reach shore but wary of dangerous rocks in his path. A navigator in the boat with him knew where the hazards were and was able to guide him safely to land. "That's the metaphor that drove me to the word 'navigator,'" he says. "There are rocks in the lives of most people, but especially the poor."
That doesn't mean that race is irrelevant. A 1995 NCI study, for example, found that even stripping out variables like income, education, and insurance, African-Americans were still 20 percent more likely to die as a result of colon cancer than whites; there are similar trends in other cancers. Theories about the discrepancies range from bias, unconscious or otherwise; intimidation by the largely white medical establishment; or a sense of fatalism that leads to unhealthful habits like smoking. That's why the navigators are outside the medical establishment and are often from the same community as the patients. "It makes a huge difference for these people just to have someone to talk to, someone who isn't part of the usual clinical setting," says Angelina Esparza, director of survivorship at the American Cancer Society, which has launched navigators at 60 treatment facilities.
Freeman says the concept might be adapted to other chronic diseases like diabetes or mental illness. He and his colleagues are hoping to eventually use navigators to enroll more nonwhites into clinical trials for cancer drugs. That's important not only to ensure that study populations are representative of the overall population but also because trial participants often get better care and access to potentially lifesaving treatments.
Though he has been on the national stage most of his career-he's also currently senior adviser to the director of the NCI-Freeman still focuses on his patients in Harlem. "These are not statistics for him," says Harold Varmus, president of Memorial Sloan-Kettering Cancer Center (a founding partner of the Ralph Lauren Center) and former director of the National Institutes of Health. "He has really lived this issue his entire career."
Born: Washington, D.C., 1933. Family: Married, two sons (both doctors). Education: A.B., Catholic University, Washington, D.C., 1954; M.D., Howard University, Washington, D.C., 1958. Hobbies: Plays jazz piano and still has flashes of brilliance on the tennis court.
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