For the past 2 decades, overall cancer mortality rates have declined approximately 1% per year overall and at about 1% to 3% per year for breast, colorectal, prostate, and lung cancer.1 These declines are attributable, for the most part, to favorable trends in risk factors (ie, tobacco use), increased use of methods to detect cancer earlier, and more effective ways to treat the disease. Although mortality rates for African Americans have trended downward, they continue to be considerably higher than those for non-Hispanic whites. In fact, for cancers impacted by early detection or effective treatment, the gap has decreased little, if at all.2 Disparities in outcome are related to social class as defined by level of educational achievement. The overall decline in cancer mortality is greater for college graduates than for those with less than a high school education; no decline in the death rates from the most common cancers has occurred for people ages 25 to 64 years with less than a high school education.3 The causes of cancer disparities related to income and education are well known. These include limited access to care, including prevention and early detection, lower quality treatment when cancer is diagnosed, and differences in behaviors that increase cancer risk, such as tobacco use, unhealthy diet, and lack of physical activity. Failure to deliver effective screening and timely follow up for breast, colorectal, and cervical cancer also contributes to cancer disparities. Ultimately, disparities represent our failure to deliver equally to all segments of the population advances in knowledge and technology that positively impact outcome.4, 5
The task of eliminating cancer disparities seems daunting at first glance. To eliminate the gap, the rate of decrease in mortality for disparate populations must be greater than that for non-Hispanic white populations, or the gap persists. This realization alone gives one pause.
There are a number of factors, however, that make the reduction and ultimate elimination of disparities possible. First, the knowledge and technological advances that should be delivered to disparate populations are not so complex as to be impossible to deliver. These interventions include tobacco control, appropriate screening, healthy diet, and physical activity. Second, the populations most at risk for disparity are located, for the most part, in defined geographical locations, which allows geographically focused efforts that can have major impact. Third, the Patient Protection and Affordable Care Act of 2010 eventually will eliminate cost as a barrier to access to quality care, opening the door for “navigator” and other programs that ensure that all patients with cancer have the opportunity for the highest quality care. Lastly, there is ample evidence that the communities most at risk for disparity are eager to engage in helping to reduce or eliminate cancer and other health disparities.6-10
These factors provide the opportunity for the American Cancer Society to re-evaluate its approach to reducing and eventually eliminating cancer disparity. The approach must be well planned, systematic, and focused on small successes in targeted communities that provide the energy and will to achieve even larger success.
Disparities in screening rates related to insurance status and education levels continue to persist.11 Elimination of these disparities is perhaps one of the easiest gaps to eliminate and can produce a small but significant victory in targeted geographic areas. Screening is at most an annual, one-time event and in many ways requires “less effort” than tobacco cessation, healthful eating, and increased physical activity, which require daily discipline. Screening is, so to speak, “low hanging fruit.” One approach to screening involves a community-based participatory process leading to “community efficacy,” a willingness on the part of community residents to help for the common good.12 The effectiveness of this approach has been demonstrated via the elimination of Medicare mammography screening disparities between African American women and white women in rural Alabama and Mississippi.6, 7
Tobacco cessation, healthy eating, and increased physical activity will require efforts that go beyond individual behavior change and will require engagement of all facets of the community—individual, family, neighborhood, school organizations, and policy makers—the community-based participatory and socioecological approach.13
The first step in the development of a community-based participatory and/or socioecological approach requires community engagement, specifically engagement of those communities most at risk. This is where the nation and, to some extent, our own American Cancer Society have missed an opportunity to accelerate our progress.
Cancer volunteer organizations, academic institutions, nongovernmental organizations, and even public health departments often attempt health promotion from afar, especially in neighborhoods in which the “comfort level” is compromised by multiple factors, including bias, culture, language barriers, extreme poverty, crime, poor housing, etc. These organizations often work through the media, create culturally relevant literature, and meet with community representatives in their own institutional conference rooms instead of actually engaging the community on site in the community. Cancer control from afar is unlikely to be effective in populations that have legitimate reasons to distrust the “establishment.” Organizations have to leave the comfort zone of the home base and engage in the community by building trust, beginning to share power, and eliminating biases that exist regarding each other. As this is being accomplished, guidance can be offered, expertise can be shared, and the community volunteers can be empowered to address cancer disparity locally.
In some ways, this approach, which includes engaging the community, focusing in geographic areas, eliminating screening disparities first, and then tackling the more difficult areas next, may seem too simplistic. This may well be true, given that cancer disparities are the result of biological, cultural, socioeconomic, and political factors that need addressing in a broader context. All contributing factors will need to be continually addressed. In fact, the American Cancer Society can take great pride in our role in shaping policy and particularly our role in advocating for affordable health care to all Americans. This alone will ultimately have a significant impact on cancer disparity. These efforts must continue.
But it is now time for the American Cancer Society to fully engage communities that are most at risk of dying from cancer. We have an almost 100-year history as a community-based organization; therefore, community engagement should not be “new” to us. We do need to learn from others and from the “at-risk” communities themselves how best to engage together to eliminate cancer disparities. This requires a community-based participatory approach.
A full-fledged, community-based participatory approach will likely allow us to develop a new and important group of American Cancer Society volunteers that can truly position the Society as a friend and advocate of those most at risk. The community-based participatory approach will require some modification or transformation in the way we traditionally approach communities. Not only will this approach reap benefits for the American Cancer Society, but, more importantly, it will accelerate our mission to help people stay well, get well, find a cure, and fight back, specifically in populations that, in fact, have difficulty staying well, getting well, and fighting back.
For over a decade, the American Cancer Society and others have attempted to reduce and ultimately eliminate cancer disparities in outcomes. Eliminating cancer disparities is both a “pillar” in our American Cancer Society leadership roles and an overarching outcome in our 2015 challenge goals. These are to reduce the age-adjusted cancer mortality rate by 50% and the age-adjusted incidence rate by 25% over the period from 1990 to 2015, to measurably improve the quality of life for all cancer survivors, and to eliminate disparities in cancer burdens among population groups.
The undeniable truth, however, is that we continue to have disparities in mortality that in some cases, such as breast and colorectal cancers, have improved only minimally, if at all.14 This should give us pause as a Society and as a nation and suggests that, despite a decade and a half, our efforts have been less than fully effective. This is not to say that as an organization and as individual volunteers, significant efforts and resources have not been devoted to this 2015 goal. However, the results of our collective efforts have not achieved the results that we want. It is time for significant transformation in our disparity programs, resource allocation, and overall efforts toward this end.