Standard of Care

 

Black patients may be wary of doctors, and in particular of clinical trials, says Hicks. It’s an understandable outgrowth of a racial history that’s marked by the decades-long Tuskegee experiments, in which physicians studied but failed to treat black men with progressing syphilis, among other instances of doctors abusing patient trust, he says. “When someone comes in and talks about research,” he explains, “immediately they say, ‘Oh, this is a guinea pig situation.’” To help counteract that unease, Hicks discusses clinical research, including its layers of patient protection, in forums at African-American churches and social organizations. 

 

But what can the patient do? All cancer patients should push for the best care, Cykert says. “But because of the historic disparities suffered by African-Americans, the need to advocate for oneself, to advocate for your care, to err on the side of wanting care is even greater,” he says.

If a physician advises against surgery, or describes you as a borderline candidate for surgery, Cykert suggests that you probe further. “The follow-up question should be, ‘How can I get to be a better surgical candidate? What can I do differently?’” The doctor might be making assumptions—for instance, that there’s a lack of sufficient family support or transportation options for an aggressive treatment regimen—that the black patient could address.

 

How patients present themselves also can change the physician dynamic, says Ebony Steele, the black co-host of the Rickey Smiley Morning Show. The 39-year-old, diagnosed with stage I breast cancer in 2007, serves as an ambassador for Circle of Promise, an African-American outreach initiative that’s part of Susan G. Komen for the Cure.

 

Steele, who currently has no signs of cancer, credits her mother for giving her faith and her father for convincing her to get a second opinion. Her sister accompanied her to doctor’s appointments—a notebook filled with questions in hand.

 

“If you go in there with your game face on, and you’ve done your research and you ask your questions and you are probing, then that makes a difference,” Steele says. 

 

In some important ways, medical care should not be colorblind, Hicks notes. Racial differences in survival may conceal molecular clues to cancer. As researchers link genetic mutations to the effectiveness of some cancer medications, it’s important for researchers to identify mutation patterns that occur more commonly along racial lines, he says. For example, a recent study has identified a lower prevalence of mutations in a gene called KRAS in lung cancer cells from black patients than in lung cancer cells from whites—information that may help explain some survival differences among patients of different races.

And black patients may more frequently than white patients face real-life socioeconomic constraints—among them insurance coverage, family dynamics, the availability of nearby high-quality hospitals—that can alter a patient’s treatment course, says Benjamin Smith, a radiation oncologist at M. D. Anderson Cancer Center in Houston. “I think race is a marker for a higher chance of less social support or fewer financial resources that place patients at risk for falling through the cracks,” he explains.

Morris, for instance, conducted focus groups with black patients and white patients in the Detroit area who had undergone colorectal surgery but were struggling to complete additional cancer treatment. Poor patients in general—many of whom were black—thought treatment cut into time with their families and had a “hard time taking off from work to go in for chemotherapy,” she says. Morris recently received a grant to study whether anecdotal feedback from the focus groups holds up across larger populations.

 

Meanwhile, as researchers work to dig out the root causes of racial treatment differences, they frequently turn up new questions. In the 2010 study of radiation treatment for invasive breast cancer published in Cancer, M. D. Anderson physicians discovered that treatment differences between blacks and whites varied along regional lines, for reasons that remain unclear.

 

​For instance, in the Midwest, radiation treatment rates exceeded 70 percent and were roughly similar among both blacks and whites. In other areas, such as the Pacific West region (Alaska, California, Hawaii, Oregon and Washington), researchers found a wide gap: Only 54 percent of black patients received radiation compared with 72 percent of whites. ìI think what that suggests is there are undercurrents of differences in treatment across the United States, says radiation oncologist Grace Li Smith, who led the study.

 

As for Fouse, she and Hicks first developed a rapport a decade ago, when Fouse was referred to him after a chiropractor’s X-ray indicated that she might have lymphoma. (She didn’t.) When Fouse’s blood work revealed leukemia in 2009, Hicks says, he and his staff invested a lot of time to make sure that she understood the clinical trial treatment option and its risks, and that she wasn’t placing too much faith in him or in a higher power.

 

From Fouse’s perspective, what solidified her trust in Hicks as she began her drug regimen was not his skin color—Hicks is black—but her confidence that he has her best interests at heart. “I trust his knowledge,” she says. “And I trust him as a person.”

 

“Color really doesn’t matter to me—just treat me good,” says Fouse, who counts each day as a blessing. Her throaty laugh wells up again. “I don’t have time for no color barrier.” 

 

 

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