Shepherd of the Sick
Poor people with cancer, says Harold Freeman, need a guiding hand
It's a busy summer afternoon at the Ralph Lauren Center for Cancer Care and Prevention in Harlem. The breast clinic is in full swing as a surgeon and a medical assistant go back and forth between exam rooms, performing biopsies, delivering test results, and checking in on patients after treatment. Maud Colas is hot on their heels. "You need to go back to Washington Heights and get your original films," Colas says to one patient. "Can you do that this week?" To another, awaiting the results of a breast biopsy in three days, Colas says: "You call me if there's any worrying, OK?" One woman has just finished her eighth go-round of chemotherapy, and Colas, she says, helped her apply for Medicaid and financial assistance to cover transportation expenses to the clinic. The two also prayed together. "I come right to you and let you deal with my problems," she says to Colas. Both laugh.
Colas is a patient navigator. Her job at the center-which sees all kinds of cancer patients but particularly those facing a diagnosis of breast, cervical, prostate, or colon cancer-is to help patients get treatment. Traversing the thickets of healthcare, especially when dealing with a serious illness like cancer, is difficult for everyone. It's even more so for the poor and nonwhite, says surgeon Harold Freeman, president and medical director of the center, who pioneered the patient navigator program at nearby Harlem Hospital more than 15 years ago. The navigators aren't medical professionals but people who speak the same language and are familiar with the patients' communities and cultures. They come from backgrounds ranging from insurance to social work and teaching, and step in when a screening test reveals a suspicious finding. Their main role: knocking down barriers to follow-up tests and treatment. "You have to make sure that whatever the doctor recommends at that point, the patient gets," says Freeman. That includes helping the patient with child care, prescription drug coverage, and getting to appointments-not to mention providing a shoulder to cry on.
A 2003 study in the Journal of the American College of Surgeons found that the navigator program at Harlem Hospital boosted the number of women who were diagnosed when their breast cancer was in its early, treatable stage from 6 percent to 41 percent, and the five-year survival rate from 39 percent to 70 percent. Last year, Congress approved funding to implement similar pilot projects, while the Centers for Medicare & Medicaid Services is currently supporting navigators at six facilities across the country. The National Cancer Institute is passing out $25 million in grants to eight healthcare institutions for navigators, targeting underserved groups such as low-income patients in Chicago and American Indians in Portland, Ore. "We can help coordinate care, so that if the patient has to take a day off from work, we can get as many appointments as possible in that day," says Karen Freund, who is overseeing one of the grant recipient programs, at Boston University Medical Center.
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.
This story appears in the August 28, 2006 print edition of U.S. News & World Report.