Participants in the opening NCCN Roundtable: Addressing Health Disparities in Cancer Care from Diagnosis to Survivorship, spoke before an audience of physicians, nurses, pharmacists, and other oncology stakeholders and industry leaders from among 1,600 conference attendees who convened to hear the effects of health policy on underserved populations, and psychosocial issues that impact patient quality of life.
Moderator Clifford Goodman, PhD, Senior Vice President of The Lewin Group, opened the session by introducing the panelists and expressing his own concerns about health care disparities on the day when Congress was expected to vote on the American Health Care Act (AHCA). “The vote taken today could put already disadvantaged populations at greater risk,” Dr. Goodman said. The vote, however, has been postponed indefinitely.
The panelists included Shauntice Allen, PhD, Assistant Professor in the School of Public Health at the University of Alabama at Birmingham Comprehensive Cancer Center, who lives with metastatic breast cancer; Moon S. Chen Jr., PhD, MPH, of the University of California Davis Comprehensive Cancer Center; Anne Filipic of Enroll America, a non-profit organization dedicated to maximizing the number of Americans enrolled in health coverage made available through the Affordable Care Act; Edith Mitchell, MD, a retired Air Force General, Clinical Professor of Medicine and Medical Oncology Director of the Center to Eliminate Cancer Disparities, and the Associate Director, Diversity Affairs of the Sidney Kimmel Cancer Center at Thomas Jefferson University; and Phyllis Pettit Nassi, MSW, Associate Director of Research & Science, Special Populations, at the Huntsman Cancer Institute at The University of Utah, enrolled in the Otoe-Missouri Tribe and a member of the Cherokee Nation.
Dr. Goodman began by asking the panelists to describe what health care disparities look like in America.
The absence of honest conversations about differences in class, culture, and social experiences lead to differences in how people are treated for cancer and informed about their choices, Dr. Allen said.
Dr. Chen added that cancer is the leading cause of death among Asian, Latino, and American Indian communities and there is an opportunity to make real gains by applying current medical knowledge to these populations.
Dr. Mitchell noted that some cancers impact minority communities experience disproportionate share of the cancer burden, and these differences must be addressed through the application of genomic research to relevant populations. Triple negative breast cancer, for example, occurs more frequently in younger women, and African Americans have twice the rate of triple negative breast cancer than the general population, with a 15% higher death rate. African Americans also have a 20% higher incidence of colon cancer and a 40% higher death rate, and develop cancers at a younger age. Therefore, screening for this population should begin earlier, at age 45, she explained.
Dr. Goodman then asked about how disparities arise and the prospects for improving care.
Dr. Mitchell spoke of overcoming biases in order to deliver what the individual needs. “With older patients, we have conscious and unconscious biases,” she said. “For patients of a certain age it may be assumed they won’t want treatment, but it’s not the chronological age that matters. Assessment must include the physiological age and comorbidities. Similarly, biases occur with religious and racial/ethnic populations. It’s frequently assumed that African Americans won’t participate in clinical trials but patients actually want to participate. Therefore, as providers, we must focus on our own biases.”
Ms. Pettit Nassi said that biases greatly impact the American Indian and Alaskan native health service systems, which have financial and geographic barriers. “On the Navajo reservation, when they see a Native American they think diabetes...it’s conditioned; it’s socialized within the system.”
Language barriers also create biases that impact health care delivery, Dr. Chen added.“[Part] of the evidence is who gets recruited for clinical trials,” he said. If the provider cannot speak the patient’s language there is a hesitation. There’s a predisposition that this person would not accept a clinical trial.”
The term “clinical trial” itself can be confusing or intimidating to patients because “clinical” is an ambiguous term, and the word, “trial” in English could also mean “experiment” or “court case”, something that could have negative connotations. Panelists agreed.
“There’s a lack of understanding of what clinical trials are and what they can do,” said Dr. Allen, who participated in a clinical trial. “I was surprised by the time commitment I had to make to the study, and the strict eligibility requirements.” She continued that she understands the importance of rigor, noted that there are patients out there waiting for tumors to grow larger or hoping to move on from a line of treatment so they can be eligible for particular trials.
The panelists explained that it is financial toxicity – the burden of the health care expense – that is arguably the most significant impediment to care, and it hits medically underserved and minority communities especially hard.
“The provider without resources is not looking for preventive screening, Indian Health Service is forced to operate on ‘life and limb services because of lack of funding,” Ms. Pettit Nassi said, describing the American Indian population. “Their hands are tied in that the care they’re looking to provide is imminent. They can’t look at the future. Patients have asked for mammogram or colonoscopy and they don’t do it in small tribes.” The entire health budget for the year can be used up with one cancer diagnosis, she explained. “Part of the saying in Indian country is ‘don’t get sick after June, because you won’t get treatment.’”
“What we’re forgetting,” Ms. Pettit Nassi added, is that “the providers out in the community… they’re on the frontier. Often, they don’t have the same resources. I’m told, ‘we don’t look for cancer because if we don’t treat it, we don’t look for it.’”
Ms. Filipic told of similar sentiments uncovered in her research. “We conducted focus groups during the first open enrollment period,” she said. “There was one woman who hadn’t done research [into health insurance.] She said, ‘You don’t go shoe shopping if you can’t afford to buy shoes.’ The lower income communities of color …assume they can’t afford it so they don’t even check out their options. We need to understand what is driving their decisions, but if you don’t address cost up front, you won’t be able to [address the other concerns].”
Dr. Allen noted that for people who have to decide between a medical bill, child care, or a car payment, access to clinical trials is an opportunity to receive high-quality care at little or no cost.
But financial toxicity and out of pocket expenses for travel, parking, lost wages for the patient and caregiver in health care are also factors for individuals who make a salary and have insurance and access to care, Dr. Mitchell said.
“I’ve been a big promoter of health care networks knowing their populations and the issues and needs that exist in the community and getting the community involved,” she said. “There may be other resources in the community to provide free mammograms.”
For example, Dr. Mitchell said, Jefferson has expanded chemotherapy administration to evenings on weekdays and weekends. This accommodate teachers, hourly workers, working parents and others who can’t afford to miss work.
Prevention also has a role to play in reducing health care disparities in cancer, Dr. Chen said, noting that smoking cessation programs and greater use of the HPV vaccine could make a significant impact.
Dr. Goodman then asked whether the burden for addressing disparities should rest on cancer care providers.
It’s a tough question, Ms. Filipic acknowledged, but one that providers might be best positioned to coordinate with the network of resources. “We’ve talked about the importance of cultural competence when it comes to care, but it applies to financial issues as well,” she said. “Just because someone can enroll in coverage doesn’t mean they are aware. Many people want to sit down with someone and talk about their options. Who are the trusted sources in the community who can get the word out?”
The panelists spoke about the importance of breaking down silos to get all participants in the health care arena involved in addressing health disparities.
There are resources that help health care institutions build the community network, Dr. Mitchell said, including volunteer groups, churches, and primary care physicians who can help define the needs.
“As cancer centers, we have to accept the challenges,” Ms. Pettit Nassi said. “Huntsman is the catchment for five states. Once you make the commitment and...go beyond just collecting the data and getting the grants….it can be done. The doctors get out of the silo. You have to go and see. See with your eyes, you will see how you can make a difference. If we don’t start bringing clinical trials out into the rural and frontier areas we’re going to miss whole populations.”
In wrapping up, many of the panelists urged those in attendance to make their voices heard in Congress and at the state level as lawmakers shape health policy.
“Apply what you learn about the community to what we know about prevention, screening and treatment and work with the community to address the individual needs of the community,” Dr. Mitchell said. “If you have an opinion regarding what is happening in Washington today, call your congressional representative today…so your voice can be heard.”
###
About the National Comprehensive Cancer NetworkThe National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 of the world’s leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.
The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.
Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news.
RSS