Cancer and social justice

A demographic, economic, historic, sociocultural, and ethical perspective

Authors

  • Dileep G. Bal M.D., M.S., M.P.H.

    Corresponding author
    1. Asian American Network for Cancer Awareness, Research, and Training, Sacramento, California
    2. Kauai District Health Office, Hawaii State Department of Health, Lihue, Kauai, Hawaii
    • Kauai District Health Office, 3040 Umi Street, Lihue, Kauai, HI 96766
    Search for more papers by this author
    • Fax: (808) 241-3511


  • Presented at Asian American Network for Cancer Awareness, Research, and Training (AANCART): Fifth Asian American Cancer Control Academy, Sacramento, California, October 22–23, 2004.

Abstract

In the current presentation, as a first-generation Asian-American immigrant, the author discussed the dire inequities of the current cancer prevention and control systems in the U.S. and attempted to analyze the root causes of the problem. The universal concern is that the occurrence of cancer, cancer's behavioral antecedents, (diet, physical activity, and tobacco use), the early detection of cancer, and cancer survivorship all relate inversely to education, income, social class, and white race. In other words, not only are cancer rates higher among lesser educated, poorer, and socially deprived individuals, but the availability and benefits of primary, secondary, and tertiary cancer prevention also are rationed, consciously or subconsciously, by current society within and outside the borders of the U.S. Asian Americans are one of the unrecognized populations among these deprived groups. The objective of this article was to provide a thoughtful perspective on this very real problem and why it persists. Because of the audience at the Asian American Network for Cancer Awareness, Research, and Training meeting, where the current report was presented, the author tried to avoid a treatise on Asian philosophy and values but could not resist the comment that, in archaic Chinese terms, the public health and health care systems in the U.S. today lack balance and harmony. Cancer 2005. © 2005 American Cancer Society.

I have communicated my share of outrage about the dire inequities in our cancer prevention and control systems as a first-generation Asian-American immigrant. Therefore, in this report, I am going to resort to a new ploy and lapse into the conventional Western stereotype of our passivity as Asians in an attempt to analyze the root causes of the problem. Some introspective soul searching most likely also is long overdue.

The demographic issue is simple enough. The universal concern is that the occurrence of cancer, cancer's behavioral antecedents, (diet, physical activity, and tobacco use), the early detection of cancer, and cancer survivorship all relate inversely to education, income, social class, and white race. In other words, not only are cancer rates higher among less educated, poorer, and socially deprived individuals, but the availability and benefits of primary, secondary, and tertiary cancer prevention also is rationed consciously or subconsciously by today's society within and outside the borders of the U.S. Among these deprived groups, one of the unrecognized subsets is Asian Americans. The object of this article was to provide a thoughtful perspective on this very real problem and why it persists. Because this particular article was presented in part at the Fifth Asian American Cancer Control Academy sponsored by the Asian American Network for Cancer Awareness, Research, and Training, I have tried to avoid a treatise on Asian philosophy and values; however, I cannot resist the comment that, in archaic Chinese terms, the public health and health care systems in the U.S. today lack balance and harmony. The karma just feels wrong, and we never quite know why, although it is always at the tip of our consciousness.

The social, cultural, ethical, and historic perspectives are intertwined interminably and are infinitely more complex. Despite the ancient adage that “those who do not study the mistakes of history are destined to repeat them,” few of us attempt an historic analysis of this and other problems. Erich H. Loewy, M.D., provides one of the best assessments of these complexities in his excellent Textbook of Healthcare Ethics.1 Primitive man feared the unknown and, thus, labeled a constellation of medical signs and symptoms with a name to feel more capable of coping with it. In that prescientific and empiric era, primitive man inevitably created a series of myths to explain these forces and to make them less terrifying. This led to pre-Hippocratic ethics—for example, the Code of Hammurabi in Babylon, in which attempts at “protecting the consumer” were made by early regulation of health and medicine. This segued to ancient Greece, where Hippocrates established the first attempts at self-policing to distinguish the healing professions from the innumerable charlatans of the time. However, occasionally, the letter and (often) the spirit of that time-honored Hippocratic corpus and oath are violated by many health professionals.

The Hellenistic, Roman, and early Christian worlds also left their imprint. The Hebrew precept of preserving or saving a life (even that of an enemy) took precedence over all other religious rules. Scribonius Sargus is effectively the father of viewing medicine as a “profession” with an attendant code of ethics. The Arabian-Jewish philosopher Maimonades has his code and oath grounded in this Scribonian ethos rather than the influence of Galen, which is the hallmark of early Christian church dogma. In medieval times, physicians often were priests, and their duties inevitably became intertwined. One noteworthy and valuable offshoot of this was the emphasis on Christian charity toward the infirm and the poor, a precept we regrettably pay lip service to today. The advance of the plague in the 14th and 15th Centuries created a whole new slew of as-yet-unresolved ethical issues concerning the making of choices and the prioritization of limited resources. This is the basic problem even today—prioritization in a zero-sum game environment. Francis Bacon progressed medical science to the point of redefining the role of medicine not only to the curing of disease but to the preservation of health and the prolongation of life, key changes toward the prevention ethos.

The transition to the seeming enlightenment of modern medicine has had a series of mixed blessings. Physicians, health professionals, and scientists no longer are schooled uniformly and vigorously in humanism and history, let alone ethics and social justice. The proliferation of science and technology at an ever-accelerating Tofflerian pace in the past few decades has resulted in a paucity of moral and social concerns affecting, if not governing, this relentless pursuit of scientific perfection. The perhaps overly charitable perspective of this conundrum is that moral issues do not arise merely out of technology; but, rather, the latter develops and evolves at the behest of prior moral concerns. It is not my intention to demonize technology; however, the lack of moral and social concern is driven by profit as often as it is driven by technology. Consider the resources put into things such as Viagra, botox, liposuction, and whole body scans. Society is willing to look the other way if there is a profit to be made. However, as the Reverend Martin Luther King moralized wisely from his jail cell in Alabama, scientific power can outrun spiritual power: we have guided missiles, and we have misguided men. An overgeneralization, perhaps, but regrettably often valid.

All of this brings us to the current day reality that, although, in 1971, President Nixon officially declared a “war on cancer” and predicted a cure in less than 10 years, the reality is that we are still a long way away from substantively preventing, detecting, treating, or limiting the progression of cancer despite having substantial tools to do so. We know how to make substantial progress in cancer prevention and treatment, but we are lacking in the dissemination and integration of that knowledge through the public health and medical care systems. Technology transfer must be practiced widely and not just preached. Although there has been an overall decline in incidence and mortality rates for cancer in the U.S. since 1992, the drop in these rates for ethnic minority groups, if any, have not been so dramatic. Therefore, many minority groups here and especially in developing countries have not shared in this progress. The ever-widening income gap over time between the rich and the poor in this country effectively is translating to selectively increased cancer incidence and mortality, much to the chagrin of the scientists, practitioners, and advocates who have labored on this problem for these past few decades. The data supporting this conclusion, especially for Asian Americans, are described variously elsewhere in this issue of Cancer. However, the barriers to further advancement are hampered by a lack of political will and paucity of resources, which issues are addressed below. To a limited extent, Asians have been unwitting enablers of this by not being as committed to social and political activism as some other individuals of color and recent immigrants.

The U.S. currently spends more than 14% of its annual gross national product (> $10 trillion) on healthcare expenditures—far surpassing the norm for all of the Western democracies and developed nations, such as Japan and Singapore. (Needless to say, the health indices in those countries are far superior to ours, albeit at lesser cost.) Within this huge expenditure base, the allocation of resources to cancer is relatively limited, and that for cancer prevention is paltry. Of such amounts, those allocated to the poorer segments of the population, especially individuals of color (and, most especially, Asian Americans as a distinct category), are totally out of proportion to the morbidity and mortality experienced by these populations. The heterogeneity of Asian Americans and the problems of recent immigration waves aside, these groups have never cultivated a political constituency to address their needs; therefore, the categorical funding allocated to them is very limited. Thus, even when the macroallocations are equitable, the microallocations to Asian-American populations, especially at the local level, are miniscule to nonexistent. These allocations must be based on a judicious mix of “care-based reasoning” (governed by feeling and affect) and “justice-based reasoning,” which claims to be ethical but primarily is cognitive-based and can border on the insensitive and uncaring. Moreover, as Asians, we often do not spotlight unique problems that afflict our populations selectively. For instance, liver cancer largely is preventable and is more prevalent than severe acute respiratory syndrome, but it receives less attention.

This is the crux of the problem—how do we cut the pie in a fashion that is fair to the haves and have-nots, with their respective political constituencies? Doctors Braveman and Gruskin summarized this concern as follows: We need to deal with poverty and health within a framework that encompasses equity and human rights concerns in five general ways: 1) institutionalizing the systematic and routine application of equity and human rights perspectives to all health sector actions; 2) strengthening and extending both public health functions, and healthcare, to create the conditions necessary for health; 3) implementing equitable healthcare financing and health insurance, which should help reduce poverty and increase access for the poor; 4) ensuring that public health and health services (both preventive and curative) respond effectively to the major causes of preventable ill health among the poor and disadvantaged; and 5) monitoring, advocating, and taking action to address the potential health equity and human rights implications of policies in all sectors that affect health, not only the health sector (i.e., all facets of daily living that have a direct or indirect impact on cancer, its genesis, prevention, detection, treatment, and progression).2 Aggressive social sciences research must be funded to determine how the health indices for all sectors of the population can be improved and made more equal.

Currently, there is a view in our country that we have a multitiered healthcare system, because a single-tiered system, similar to those in Canada and England, smacks of socialism. However, there is another school that justified the internment of Japanese Americans in World War II as necessary for that time and place! In our more recent history of successive waves of immigrants to this melting-pot country of immigrants, many groups have been subjected serially to overt discrimination: Italians, Irish, Poles, Eastern Europeans, and many people of color. Then, they became acculturated and merged with the evolving and constantly redefined macropopulation over time. The strength and the weakness of this country is that we are heterogeneous. This heterogeneity either can be viewed as a value of our different cultural perspectives or, instead, it may engender hostility based on our differences. Clearly, we all need to strive for the former and shun the latter.

I want to end on a somewhat unusual economic note with some concepts from an eminent Asian who I have the privilege of knowing: Professor Amartya Sen, Professor at Harvard and Cambridge Universities, and the 1998 recipient of the Nobel Prize in Economics. The Nobel Prize Committee asserted that Dr. Sen restored ethics to the discussion of economics, something that the rest of us seldom do. He conceived the legendary term “unfreedom” to describe the different, subtle nuances of freedom that all relate to the complexity of the personal human condition.3 Development (which includes healthcare and public health), Professor Sen argues, is the process of expanding the real freedoms that individuals enjoy. This requires the removal of the major sources of unfreedom: poverty as well as tyranny, poor economic opportunities as well as systematic social deprivation, and neglect of public facilities as well as intolerance of repressive states. A central theme is the dissonance between income per capita and the freedom of individuals to live long and live well. A great example to him is that the unfreedom of bound labor in some Third World countries today is momentous for the same reason that the American Civil War was fought. In fact, he goes on to cite an unprecedented incident of Karl Marx praising capitalism (in Das Kapital, yet) by characterizing the American Civil War as the single great event of contemporary history related to the issue of freedom. An ending homily from Dr. Sen that is relevant to our context is that, today, richer countries too often have deeply disadvantaged populations who lack basic opportunities for employment or for economic and social security. These concepts resonate deeply for me with the economic unfreedom of cancer prevention and care for poor populations, including Asian Americans, in a country as wealthy as ours today.

Therefore, the bottom line is very simple, and we must not falter in pursuing cancer research, prevention, and control equally for the forgotten minority—Asian Americans—by aggressively working with the private, nonprofit, and public sectors that control our collective destiny. In this relentless pursuit, we must be persistent because, to paraphrase that philosopher Dr. Seuss, those who mind won't matter, and those who matter won't mind. In the ultimate analysis, cancer prevention is not just a medical, scientific, economic, or public health concern. It is a fundamental issue of social justice, and injustice anywhere, as The Reverend Dr. Martin Luther King reminded us in his memorable “I Have a Dream” speech, surely is a threat to justice everywhere.

Thus, cancer prevention and control are easier said than done. We know that the two major preventable risk factors, tobacco and diet/physical inactivity, account for nearly two-thirds of cancers, and poor attempts at screening efforts directed toward the populations at maximal risk constitute an ongoing problem. Technology transfer or diffusion research that affects Asian-American populations first must be funded, then conducted, and finally implemented if we are to achieve the kinds of incidence and mortality rate declines that we seek. The U.S. is no different from other societies, in that we have a regrettable but perhaps understandable penchant for polarizing issues along class, sociocultural, economic, educational, and racial lines, especially during periods of social and economic stress. Therefore, this seeming “health” issue is intertwined interminably with larger environmental, economic, social, cultural, racial, and educational issues.

The first step toward implementing a solution is a frank and universal recognition of the issue or problem in all its facets. The nation must now take on the task of aggressively addressing solutions to these concerns in a societal environment in which health care as an industry consumes an ever-increasing share of the gross national product, which currently stands at greater than 14%. These multidimensional pushes and pulls cannot merely be wished away by rhetoric or good intentions. Reality dictates that the resources available for health care are finite and, as a percentage of society's expenses, hereafter will be constant. Into this zero-sum game comes this additional pressing and urgent need for resources. Therefore, there must be some distinct reallocation of extant resources at the local, state, and national levels of both the public and private sectors if this issue is to be addressed head on, let alone solved.

An oft-ignored perspective is that Asians must accept accountability for not doing all that can be done: For instance, why is it that the AIDS, breast cancer, and other constituencies are justifiably able to get necessary resources for acquired immunodeficiency syndrome and breast cancer, which are their issues, but Asian Americans are unable to get their fair share? The Asian community should use data to drive resource allocation, and they need to invest in community organizing and capacity building within their own communities to develop and implement culturally competent interventions.

We also need to demand that Asian communities have a seat at the table to prioritize the distribution of resources. This cannot and should not be done in an atmosphere of obdurate ideologic stridency on the part of the current haves and have-nots. It must not deteriorate into a partisan issue. Adequate societal resources must be redirected categorically toward reducing the accelerating differences in the cancer mortality rates between different racial and ethnic groups. The Department of Health and Human Services' well documented and well researched Year 2010 Objectives are as good a place as any to start looking for specific areas for such emphasis. We need to reassert the moral leadership that has been displayed at so many other critical junctures in our nation's history. We must walk the walk, not just talk the talk.

Ancillary