By Mary Jackson Scroggins
Equivalent Health Care
A matter of practicality, good science and caring
By Mary Jackson Scroggins
As an African-American ovarian cancer survivor and a former medical writer and editor, I have always understood that the terms "health disparities" and "medically underserved populations" encompass me, my children, my neighbors and many of the strangers with whom I regularly share subway rides and conversation. I have also always known that it is not a good thing to be defined—even in small part—by terms prefixed with "dis-" or "under-."
So, instinctively, I care about disparities—both health and otherwise—in part because I have to care. And there are compelling reasons for everyone to care.
Health care disparities can broadly be defined as unequal health care for different segments of a population, resulting in inferior health outcomes for certain groups and an unequal burden in terms of morbidity, quality of life and survival. These groups, also known as special populations, may be racial or ethnic groups, elderly patients or any segment of society that differs from the majority.
According to the National Cancer Institute's Center to Reduce Cancer Health Disparities, "The burden of cancer is too often greater for the poor, ethnic minorities and the uninsured than for the general population." More simply put, these populations experience disproportionate suffering and death from cancer. The NCI center also says, "Equal care for cancer results in equal outcomes and equal survival rates." Again, more clearly stated, the degree of suffering and death is unnecessary. Therefore, it is unacceptable.
The costs of these disparities are high. The practices of delivering unequal care and unfairly distributing health care resources challenge who we are as a society, and they also challenge science. In a lecture to patient advocates in 2005, Alex Adjei, a professor of oncology at the Mayo Clinic College of Medicine in Rochester, Minn., provided evidence from studies in the United States, Australia, Japan and Ghana which suggests that representative inclusion of special patient populations in clinical trials is "good science," not politics, noting that "if researchers use a homogeneous patient population, they come up with results that are skewed because our real population is heterogeneous."
In February, the journal PLoS Medicine reported that a comprehensive search of published studies going back more than 20 years and covering more than 70,000 people found that racial and ethnic minorities—who are underrepresented in health studies—are not less willing than whites to participate in research. "This finding suggests that any underrepresentation of minority groups in health research, when it occurs, is likely the result of other factors, such as the fact that some studies invite comparatively few individuals from minority groups to participate," the authors conclude. Medically underserved populations are not "invited" to benefit equally from the clinical-trial treatment option, thus science and all of us are deprived of the full spectrum of information that could have been derived with their inclusion. This is not "good science."
It is relatively unimportant why you care about health care disparities. Perhaps the argument for good science is overwhelming. Perhaps unnecessary and selective suffering and death are simply unacceptable. Perhaps moving toward membership in a special population—that of elderly patients—personalizes the concern. What is important is that you do care and that caring mobilizes you to intolerance for unequal health care delivery and uneven health resource distribution.
An edited version of Alex Adjei's lecture is available on the Survivors and Advocates section of the AACR website.