Disparities in cancer care: Are we making progress?
A look at how researchers and organizations are working to reduce cancer health disparities
Editor's note: This is Part 1 of a 2-part series.
In August 2011, the American Society of Clinical Oncology (ASCO) published a policy statement in its Journal of Clinical Oncology regarding opportunities in the Patient Protection and Affordable Care Act (PPACA) to reduce cancer disparities.1 The authors praise a number of provisions within the act that likely would improve disparities, most notably its expansion of insurance coverage to 32 million individuals by 2019 (from 83% of legal, nonelderly residents covered currently to 94% when the full law takes effect).
ASCO makes additional recommendations for further combating the problem, ranging from research to identify optimal screening services for ethnically diverse populations to assisting underserved individuals in applying for health coverage. “PPACA has the potential to expand access to care and improve cancer care among vulnerable groups,” the authors note. “However, PPACA alone will not solve the problem of cancer disparities but instead builds a new foundation for creating meaningful policy changes.”
To further ensure support for disparity initiatives, ASCO and other cancer organizations also are supporting the Health Equity and Accountability Act, a bill introduced in September 2011 that complements the PPACA. The legislation builds upon and expands existing and planned efforts to reduce disparities and guides federal efforts in areas such as data collection and reporting; culturally and linguistically appropriate health care; health workforce diversity; health outcomes for women, children, and families; targeting high-impact minority diseases (including cancer); health information technology; and emboldened accountability and evaluation.
With Medicare cuts and other budget cuts looming, however, it is uncertain how many of these recommendations actually will be enacted. “We have grave concerns that many of the recommendations we made in our policy statement won't or can't go forward given what's happened on the Hill,” says Beverly Moy, MD, MPH, chair of the ASCO Health Disparities Advisory Group and lead author of the ASCO policy statement. “That said, we are committed to working with policymakers to move forward on disparities.”
Access to care is a major priority in addressing disparities, says Dr. Moy. According to a report by the Henry J. Kaiser Family Foundation, racial and ethnic minorities suffer disproportionately in terms of their rate of being uninsured. In 2008, for example, 13% of whites were uninsured compared with 32% of Hispanics/Latinos, 21% of African Americans, and 28% of Native Americans/Alaskan Natives. At the same time, racial and ethnic minorities are known to have significant disparities in cancer outcomes even after controlling for insurance and income. “In the past, people didn't recognize that there were such blatant disparities,” Dr. Moy says,”We've come a long way in awareness and education.”
Nevertheless, experts agree that the problem is likely to worsen before it gets better. The progress that has occurred could be outpaced by the impact that disparities have over time, says Angelina Esparza, RN, MPH, director of health equity for the American Cancer Society. “Had we been able to address some of these problems 10 years ago, the impact of disparities might not have been as drastic it is now, but the lack of attention, organization, and funding toward this issue has created a wider gap every year,” she says. “And every year that it goes unresolved, it creates a greater need down the road.”
The causes of cancer disparities are numerous and complex, and many are still not known. Despite tight budgets, however, researchers, leading cancer organizations, and providers are continuing their efforts to address disparities on a variety of fronts, ranging from prevention and research to training scientists and clinicians from underserved populations.
Among those many efforts is research spearheaded by Holly Prigerson, PhD, director of the Center for Psycho-Oncology and Palliative Care Research at the Dana-Farber Cancer Institute in Boston, Massachusetts, who is focusing on disparities in end-of-life (EOL) cancer care. Through her work, she has learned that discussions aimed at helping patients make informed EOL decisions did not have the same impact on black patients as they did on white patients. The reason why that is problematic, she says, is because life-prolonging care at EOL is associated with greater distress and poorer quality of life.
In a multiinstitutional study of 71 black patients and 261 white patients with advanced cancer, for example, Dr. Prigerson and colleagues found that, despite similar rates of EOL discussions, more black patients than white patients (19.7% vs 6.9%) received life-prolonging EOL care.2 “We're trying to learn where the communication is breaking down,” she says.” What is and isn't being said? Are different things being said about the efficacy of different treatment options?”
One telling finding of her research was that terminally ill black patients were more willing to accept life-prolonging care because they expected to live longer. Black patients with a 4-month life expectancy, for example, thought they would live another 15 years while their white counterparts expected to live 5 more years. If patients are unaware of their vulnerability, says Dr. Prigerson, they are less likely to request hospice and more likely to believe they will survive being resuscitated. “If these are informed preferences, that's fine,” she adds. “We're not trying to impose one set of values on a person's care. But decisions should at least be informed, and that gets to the issue of cultural competence.”
Through a National Cancer Institute grant, the investigators are continuing to pursue answers by enrolling 400 patients (200 black and 200 white) with a life expectancy of fewer than 6 months at sites in Boston, Massachusetts; Dallas, Texas; and Richmond, Virginia. Patients and their family members will be interviewed monthly to determine how EOL communication differs between blacks and whites in terms of acceptance of terminal illness and knowledge of risks and benefits, EOL treatment options, and advance-care planning. Researchers also will study how communications affect the rates at which patients receive intensive, life-prolonging care, palliative care, and care consistent with their preferences and, ultimately, their quality of life. The results will help Dr. Prigerson and others determine the most effective interventions for reducing disparities. “We need to figure out where we can get the biggest bang for our buck,” she says. “Are there factors or oncology provider factors we need to address, and where should we start?”
We're trying to learn where the communication is breaking down. What is and isn't being said? Are different things being said about the efficacy of different treatment options? — Holly Prigerson, PhD
Dr. Prigerson believes that, although there is a significant scientific focus on biological differences related to disparities, not as much attention is paid to social differences. “Social science has a bigger role to play than people think,” she says, noting the importance of defining cultural competency and developing interventions to help improve understanding between health care providers and patients of diverse cultural backgrounds. For example, research shows that immigrant patients' comfort with US health care and whether they want to participate in clinical trials depends on how acculturated they are to this country.
In an effort to help improve cultural competency, Dr. Prigerson also is working on developing a National Institutes of Health (NIH) R25 grant to provide cancer care training to minority social scientists. This project, she says, is in part due to reaction from a study published in Science, which found that a research grant application to the NIH from a black scientist was approximately one-third less likely to be funded than that of a white scientist.3
NIH officials could not readily explain the disparity in funding, but they have put together a task force to examine it. “It indicates to us that we have not only failed to recruit the best and brightest minds from all of the groups that need to come and join us:' Francis Collins, MD, PhD, NIH director, was quoted as saying in the New York Times, “but for those who have come and joined us, there is an inequity in their ability to achieve funding from the NIH.”4
Part 2 will appear in the March 1st installment of “CancerScope,”and will examine how leading cancer organizations are addressing the disparity problem.