Addressing the Roots of Disparities in Cancer Care: Inherent Bias, Resources, and Insurance

At the 22nd Annual Conference of the National Comprehensive Cancer Network: Improving the Quality, Effectiveness, and Efficiency of Cancer Care, held March 23-25, 2017, in Orlando, FL, policy researchers with interest in cancer care disparities discussed the source of existing disparities and how they can be successfully addressed.

Cliff Goodman, PhD, senior vice president, The Lewin Group, led the panelists—Shauntice Allen, PhD, University of Alabama at Birmingham Comprehensive Cancer Center; Moon S. Chen, Jr, PhD, MPH, associate director for cancer control, University of California Davis Comprehensive Cancer Center; Anne Filipic, Enroll America; Edith Mitchell, MD, Sidney Kimmel Cancer Center at Jefferson; and Phyllis Pettit Nassi, MSW, Huntsman Cancer Institute at the University of Utah—through a very interesting discussion that touched on racial, gender, genomic, perspective, economic, and geographic bias.

“Disparities, even if they are not made worse by the replacement healthcare law, are at risk of getting worse,” Goodman said, addressing the panel. “What do these disparities look like? Has [the Affordable Care Act] done anything to reduce them? Financial toxicity: is it harder for certain populations? Can providers introduce bias?”

Allen, who has been diagnosed with cancer herself, said that her motivation to work in the field of cancer disparities is to show that cancer is not a death sentence. “We need to be open to having the conversation and till we are open to doing that, disparities will continue. I think there are differences in how individuals are treated and how the discussions are introduced to people,” she said.

Filipic believes that developing outreach strategies for Americans and figuring out ways to talk about the advantages of enrolling on a healthcare plan to the common man is a viable strategy.

“It is important to ensure that physicians and researchers understand how difficult it is to make it right and how bad it would be if they get it wrong,” Nassi said. “American Indians are dealing with a different health system: the Indian Health Service. This brings geography into play. We have to consider here the fact that this is a medical service that is underfunded—for every dollar they request, they get 13 cents to 24 cents.”

Mitchell explained that African American women have triple the levels of triple negative breast cancer, so although the incidence is not high, death rate due to the genomic nature of their disease augments the death rate. “Understanding disparities in America, working with the population and understanding the genomics that defines the population, is what I do,” she explained.

Another example that Mitchell provided was of colon cancer, which has a 20% higher incidence in African Americans but a 40% higher death rate. Further, incidence is much earlier in this population. “So understanding these individuals, understanding their disease profile and treating them accordingly is important,” she added.

Mitchell emphasized the importance of having an open conversation with patients on clinical trial participation. “Don’t assume, because that can introduce bias. Open a conversation and understand what the individuals want,” she said.

Filipic said that the Affordable Care Act (ACA) tried to address these disparities. “Since ACA was passed in 2010, over 22 million gained health coverage with the available provisions. The uninsurance rate nearly halved from 2014 (about 16%) to 2016 (under 9%). Across all demographic groups, a reduction in the uninsured rate has been seen.

“Congress will be voting on the AHCA [American Health Care Act] later today,” Filipic said. When questioned about her own leaning for the ACA, she said, “While I have bias, many cancer societies have expressed concerns about the AHCA. The Congressional Budget Office, which is a non-partisan institution, has projected that 14 million would lose coverage by 2018. Cost is king…whether it is Medicaid expansion or the tax credits that bring affordable coverage within reach. So ultimately, we are seeing that lower income and sicker individuals stand to lose in this proposal.”

“Disparities are already hard to manage, and with 14 million losing coverage will have an interesting effect on the population,” said Allen.

Nassi emphasized the importance of reaching out to community clinics that often work under constrained resources. “Those of us working within cancer systems, we forget that providers in clinics or in the community do not have the same resources. Doctors tell us ‘If we don’t treat it, we don’t look for it.’ So sometimes the bias is inherent because of financial situations.”

“One potential area of bias is who gets recruited in clinical trials. So if a provider cannot speak the patient’s language, he may not spend the time to explain the advantages of participating in a trial or the assumption that the patient may not want to participate,” Chen said.

Tapping into her years of experience as an oncologist, Mitchell said the zip code is a good identifier of disparities. “So one of the things we need to do is give individualized medicine that is not based on where they live but what their medical status is,” she said.

Nassi explained that at Hunstman, “We are doing outreach, pushing screening, trying to educate. But the resources do not exist in the communities. Cancer centers, on the other hand, do have the resources…so we need to go to them with the resources.” She explained, however, that there need to be a plan in place after a person is diagnosed, because treating 1 individual with cancer in the American Indian community can wipe out the budget for the community.

Filipic explained that the perception of affordability is also a bias. She shared an example of a woman from a focus group conducted by Enroll America, who did not have any knowledge on the healthcare coverage options she had available on the ACA because she assumed she would not be able to afford the premium. “Many do not understand that there is affordable insurance and there are tax credits available,” she said.

“I have been a big proponent of the healthcare institution understanding the patient population—who they are and getting their community involved,” Mitchell explained. “For example, mammograms may not be covered by an individual’s insurance plan, but there may be community programs that provide free mammograms.” She added that her institution has made it more convenient for patients receiving cancer treatment to receive their care without having to forego their work hours or income, with extended chemotherapy care on weekends and walk-in clinics with more flexible hours.

“Cancer centers need to accept this challenge of addressing disparities. Once you make the commitment, and look beyond collecting data and getting the grant, we must go to the community and see what can be done there,” said Nassi.