When Otis Brawley, then medical director of the hospital’s cancer center, asked the woman when she had first noticed a lump in her breast, she recalled that her son had been in second grade. He was now a high school junior. Even after the tumor first broke through her skin, she admitted waiting nearly two more years to seek treatment. She had no health insurance, she explained. Apparently she hadn’t realized that, as a public hospital, Grady accepts and treats the uninsured. Despite the intense treatment that followed—a mastectomy, along with radiation and chemotherapy—her cancer was already so advanced that she was dead within a year.
Her case might seem extreme, but Brawley says at Grady’s cancer center, where the majority of patients are minorities and many are uninsured, “that sort of thing happens several times a year.” When he examined hospital records, he found that, on average, about 40 percent of the breast cancer patients treated there have already reached stage IV, for which the five-year survival rate is just 20 percent (versus nearly 100 percent for those diagnosed at stage 1). By comparison, only a small percentage of the patients he saw at Emory University’s cancer institute, which serves a largely white, middle-class population, had progressed to a late stage when they were diagnosed.
The situation at Atlanta’s public hospital is hardly unique. In a new study, which will be published in the March issue of the journal Lancet Oncology, researchers at the American Cancer Society (ACS)—where Brawley is now chief medical officer—analyzed records of more than 3.7 million cancer patients diagnosed between 1998 and 2004 throughout the country. They found that minority and uninsured cancer patients like the woman at Grady Memorial Hospital have a significantly higher risk than white patients and those with private insurance of having reached an advanced stage of the disease by the time they are diagnosed or seek treatment. That means they are more likely to endure excruciating, and often more expensive, treatments and they are more likely to die from the cancer.
The ACS study is not the first to note racial disparities in cancer diagnoses, but it is the largest to examine the role of both insurance status and race and it confirms for many oncologists the extent of the issues they’ve observed in their own practices. “For the uninsured, the underinsured and ethnic minorities, early detection of cancer is a major problem,” said Dr. Christopher Lathan, a practicing oncologist and instructor at Harvard Medical School.
Solving it has proven difficult, in part because there is no single explanation. While the study found that being uninsured can lead to a later diagnosis, when ACS researchers examined the data more closely, they found that, regardless of their insurance status, black and Hispanic patients still had an increased risk of having an advanced-stage disease—typically, stage III or IV—at diagnosis when compared with white patients. Even if a white patient and an African-American patient were each privately insured, the African-American patient was more likely to be diagnosed at a later stage. “What we don’t see directly in the data for this paper is that the proportion of people who are uninsured or covered by Medicare is much higher among black and Hispanic populations. But even when you take insurance into account, race still has an effect,” says Elizabeth Ward, one of the study’s authors and managing director of surveillance at the ACS. “So we have to look at factors operating at a variety of levels … whether the facilities that are available are acceptable, whether or not the person can access [specialized] care, whether there have been experiences of discrimination or a feeling that one is not receiving good care at a particular facility, especially if it seems related to race or ethnicity.”
Oncologists agree that there are many factors that influence whether a patient is screened for breast, prostate and cervical cancer, or whether symptoms of cancers that don’t have proven screening methods, like bladder or pancreatic cancer, will be detected before the disease spreads—not just insurance status, but awareness, access to a primary-care physician and patients’ perceptions of doctors and hospitals.
Dr. Cary Gross, an associate professor of medicine at Yale School of Medicine, recently coauthored a study in the journal Cancer that examined data from 1992 to 2002 and found that, throughout that period, African-American patients were significantly less likely than white patients to receive therapy for cancers of the lung, breast, colon and prostate regardless of the stage of their cancer. He says that disparities persisted even after the researchers accounted for the socioeconomic status of the patients, the presence of other chronic conditions, and whether or not they had seen doctors prior to the cancer diagnosis. “So there must be something else,” he says. He and his colleagues are now sifting through the data to try and identify specific reasons that might explain why the disparities in cancer care have persisted. He too suspects that proximity to specialists and high-quality care plays a part, along with other factors that are even more race-specific, like communication or cultural barriers between patients and doctors and patient distrust of the health system because of prior experiences. “Ethnic minorities tend to be less empowered so they’re more reluctant to go see a physician, especially if they have a bad diagnosis,” says Harvard’s Lathan. “There’s this feeling of: what are they going to be able to do for me?”
Lois Ramondetta, an associate professor of gynecologic oncology at the M. D. Anderson Cancer Center in Houston who practices at a county hospital that serves a largely Hispanic and uninsured population, says many patients there arrive with late-stage cervical cancer. Rarely have they had a Pap smear, an effective screening method recommended at least every two to three years at a minimum. Her patients are often unaware of the test’s importance, she says, and they don’t have a regular Ob-Gyn. Education plays a role, she adds, but so do support systems. Sometimes the obstacle to a screening test and early cancer diagnosis can be as simple, and as maddening, as the inability to find childcare or to leave work in order to attend an appointment. “It is incredibly frustrating,” says Ramondetta. “And it’s very sad when you see people come in with an advanced disease and you know that didn’t have to happen.”
Patrick Maguire, a radiation oncologist with the New Hanover Radiation Oncology Center in Wilmington, N.C., which was awarded a grant from the National Cancer Institute to study racial barriers to cancer care, says they too have identified “multiple obstacles.” Nearly one quarter of the population in the region served by the center is African-American, and the median income is lower than the national average. “Clearly one barrier is economic,” he says, “but there are also transportation issues or occasionally there are patients whose cultural or religious beliefs, in my opinion, hinder their care. We’ll see patients who come in with advanced cancer who says they’re waiting for the Lord to heal them.”
It may be impossible to convince those patients that early medical intervention may be more effective than prayer alone, but Maguire is trying to reach out to populations who may simply lack the awareness, the transportation, or the trust to seek regular medical care. His oncology center is using some of the NCI grant to hire women from the community to do outreach—spreading the word about the importance of mammograms, for example, in detecting breast cancer—and to help patients who are distrustful or overwhelmed to navigate the health-care system. They’re also compiling the data they’ve been gathering on specific issues that prevent cancer patients from getting diagnosed, or seeking care, earlier, and are planning to publish their findings, along with other sites that received NCI grants.
Maguire acknowledges that because the obstacles can be so varied, and specific to certain regions or populations, there is still a great distance to cover before oncologists are able to overcome the disparities in cancer care. But he’s hopeful that the growing body of research, and awareness that accompanies it, is starting to close the gap. “It is hard trying to sort it all out,” he acknowledges. “But if we can knock down one obstacle at a time, we’re still making progress.”