Debra Powell, 64, knew something was wrong. She’d been constipated for several days and after taking laxatives all that happened was some gurgling in her stomach. She went to the doctor and, after a very brief examination, he told her she needed to go on meds for an enlarged thyroid.
But that Monday, at work, the pain was unbearable. Her boss told her she couldn’t leave early, but Powell said she had to and drove herself to the emergency room in Lakewood, California. She didn’t know how to get there or where to park when she did. It’s all a blur, she says. She just remembers that when she finally did make it to the ER, some hospital employees ran tests. Then, a nurse came into the room, told her she had cancer, and left.
“I had no idea who this woman was and I haven’t seen her since,” recalls Powell. “She just said, 'You have colon cancer,' and walked out.”
Since that time, Powell says she has been connected with caring and communicative physicians, but there are endless stories like her first one—of people feeling neglected and confused—that have inspired a movement called “patient navigation” to help get cancer patients through the complex and often impersonal healthcare system. The movement, founded in the early 90s, advocates for assigning patients “a navigator,” or someone who guides them through the entire treatment process, including making sure people who are at risk for cancer get screened in the first place.
The founding father of patient navigation, oncologist Harold P. Freeman, initially conceived of the concept as a way to close the significant gap between black and white women receiving treatment for breast cancer in Harlem. Today, it’s widely considered integral to ensuring all cancer patients, but particularly patients in historically undertreated communities, get the support they need. But a nationwide study currently investigating patient navigation in black Americans with early stage lung cancer shows there’s still significant work to be done.
Before beginning the study, the lead researchers—Nestor Esnaola, associate director of cancer disparities at the Fox Chase Cancer Center, and Marvella Ford, associate director of population sciences and cancer disparities at MUSC’s Hollings Cancer Center—analyzed cancer registries in South Carolina, finding there were racial treatment disparities among breast, colon, rectal, and lung cancer patients. (Nationwide, according to a 2016 to 2018 report by the American Cancer Society, racial disparities in cancer death rates are decreasing, but they’re still 24 percent higher in black men and 14 percent higher in black women than in white men and women, respectively.)
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The disparities in lung cancer, however, were particularly “astonishing,” Esnaola says. Even when they looked at patients with a similar socioeconomic status and access to insurance, there was a 43 percent difference between blacks and whites receiving surgery for early stage lung cancer in the state, a disparity which Ford says also exists in other parts of the US. “That’s what we call a public health problem,” Esnaola says.
They recruited groups of patients—both black and white—who were at risk for lung cancer and started asking questions. They found that many of the misconceptions about cancer—identified by Freeman and others decades ago—persist, particularly among black Americans.
“There were misconceptions about how surgery can make the cancer spread. There seemed to be a fair amount of nihilism, people just assuming [cancer] is fatal,” Esnaola tells me. “The other thing we found too was a fair amount of distrust of physicians.”
Freeman’s patient navigation strategy, which involves getting to know each patient and the community they’re from intimately, has been shown to help increase the survival rate of black women with breast cancer significantly. Esnaola and Ford decided to apply this strategy to the lung cancer epidemic.
Soon after, they encountered an unanticipated challenge. They reached out to five cancer centers in South Carolina, assuming that would be plenty to find 200 patients. Instead, they discovered that the majority of the black patients being treated for lung cancer had already advanced to stage three or four, which indicates that they didn’t get to the doctor in time for it to be more effectively treated. “We were very surprised,” says Ford. “Now we know we have to make a concerted effort just to identify people in the community.”
The researchers are slowly building an infrastructure that didn’t formerly exist just to get at-risk patients in the door for screening. They’re cultivating relationships between primary care physicians, emergency rooms, and cancer centers as, Ford said, they know minorities are less likely to be referred to specialists and more likely to use the emergency room. They’re also reaching into communities through churches and other local organizations.
Powell says she’s not surprised black patients, such as herself, are less likely to come in to get tested. She says she sees an aversion to screening among her family and friends, and that she thinks it’s because it’s so invasive.
Powell had never been to the emergency room before the day she was diagnosed with cancer. She hadn’t even ever been sick, except for the common cold. She says she knew she was of the age where she should have gotten a colonoscopy, but she just “didn’t want to” because she thought it would be uncomfortable. In retrospect, she wishes she had. “That was just my attitude and you see where my attitude got me,” Powell says. By the time she got her diagnosis at the hospital, her tumor was too large to be removed.
Len Lichtenfeld, deputy chief medical officer for the American Cancer Society, remembers encountering these mentalities as far back as the mid-70s when he was working as an oncologist in Baltimore. At the time, he was particularly “struck” by the “high incidence of lung cancer in the black community.” It’s important not to forget, Lichtenfeld said, that distrust among black Americans is warranted considering how they have been historically treated by the medical community. He said the Tuskeegee Experiment—a now notorious 40-year-long government study that misled African American men to believe they were getting treated for syphilis when they were actually just being observed and prevented from getting care elsewhere—“underlies everything.”
To this day, that and other similar historical incidences leave the community with a strong sense of concern and caution towards some of the things that are done and recommended, and Lichtenfeld says that has to be respected.
Lichtenfeld believes patient navigation can be very effective at addressing and changing a dynamic of distrust. He also said it’s essential for just providing support to navigate logistical barriers to treatment like communicating with insurance companies, something which even patients with abundant resources struggle to do. Even if someone wants to go to the doctor, he says, they can’t if they don’t have the money, a ride, childcare or a number of other resources that might be more of a given for those with systemic privilege.
In the case of the lung cancer study, the researchers have realized a significant barrier to care is merely the inability to get to cancer centers, particularly in rural areas. As a result, they’ve identified dialysis clinics and churches that have vans which can transport patients to their appointments.
Esnaola, a principal researcher on the study, says part of their work is about investigating the efficacy of “a robust patient navigation” system, where navigators regularly check in on patients and help them every step of the way. As of January 1, 2015, the American College of Surgeons’ Commission on Cancer required that all 1,500 cancer centers that fall under their guidelines have patient navigation.
One big issue, he says, is that centers will hire nurses to provide this extra guidance, but they’ll also require them to be caretakers and administrators. “It ends up being too much for one person,” Esnaola says. “The reality is that most cancer centers don’t really want to invest in this.”
Lichtenfeld says sometimes he gets frustrated too, because he feels like there’s a lot of talk and not enough action. Most people like the idea of navigation, he says, but the question always becomes: “how are we going to pay for it?” Cancer centers, they say, see the chasm in patient care, but for now, most just don’t have the resources needed to close it.
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