Reaching Toward the Outer Circle

by Ian Magrath

"Through me you pass into the city of woe, through me you pass into eternal pain."

When, in his Inferno, Dante, guided by the poet Virgil, arrives at the gates of Hell, it is with a mounting sense of dread that he reads the malediction inscribed on the arch above. Beginning with the lines quoted in the epigraph to this message, and ending with the words, "All hope abandon, ye who enter here," the inscription surely captures the emotions of many patients when they first learn that they have cancer. Yet Dante's self—stated purpose in writing his poem was to "remove those living in this life from their state of misery, and lead them to the state of felicity." And indeed, the Inferno is only the first canticle of a three—part poem, The Divine Comedy, which describes a journey, first into the depths of despair, then up the mountain of purgatory (Purgatorio) and beyond, into the joys of paradise (Paradiso).

Figure 1

This literary voyage is comparable, perhaps, to the emotional journey of those who overcome the hardships and challenges of cancer treatment, and quite frequently find that they have learned to appreciate the life they might easily have lost more than ever before—each new day is a gift to be savored. Dante's poem contains several other parallels. According to the World Bank, 1.2 billion people in the world live on less than a dollar a day (2.8 billion on less than $2 a day), in circumstances that, in comparison to the economically uppermost billion, resemble those experienced by some of the inhabitants of Dante's Inferno. Scarcely able to provide food for their families, the added burden of a potentially fatal illness would surely bring, had they ever heard of Dante, the words of his famous inscription to mind. Dealing with cancer is difficult enough for educated and wealthy families, but the experience for poor and illiterate patients is doubly frightening. Denial, common enough in upper economic echelons, takes on a different hue in the poor, for whom the loss of a breadwinner or parent has a devastating impact. With extremely limited supports, patients from the lowest socioeconomic strata, particularly women, are tempted to ignore early symptoms of serious illness in the vain hope that they will go away. If aid is sought, it is often from a local "healer" with the hope that this latest physical and (potentially) financial burden can be spirited away as if by magic. In India, for example, nearly half of those with a health problem (from all social strata) seek help from "alternative" systems of medicine. While these systems may be beneficial in certain circumstances, their value in cancer has not been demonstrated, and as such, they may do harm by causing inordinate delay in the patient reaching a practitioner capable of treating cancer. Even medical practitioners may not consider an ailment to be cancer, particularly in its early stages. If cancer is detected, it may be assumed to be incurable, an assumption that becomes self—fulfilling as the weeks and months, even years, go by. Delaying treatment reduces the chances of cure and permits its purchase only at the cost of much more complex and expensive treatment than would have been needed if the cancer were detected earlier (see case report on page 7). Even when the diagnosis is made, the fear of treatment, particularly mutilating surgery, may prohibit patients from going to see specialists able to provide specific therapy.

There is another relevant point that is made forcefully in the early part of Dante's allegorical journey. Overcoming his fear and passing through the gates, he encounters the souls of those who had passed their time on earth in a state of apathy and indifference. Concerned only with themselves, they were doomed to continue their mean existence in a state of hopelessness, relieved neither by suffering nor death. This is a sobering message indeed, and one that, in our context, is directed particularly at those in a position to positively influence the lives of the world's poor. The World Bank, in its latest World Development Report, states that poverty is an "outcome of interacting economic, social and political forces, and in particular, an outcome of the accountability and responsiveness of state institutions." Clearly, the elimination of poverty will require political will, but in the case of the poorer countries, a favorable international socioeconomic climate helps. South Korea has demonstrated what can be achieved when both are present. We may safely presume that until the elimination of poverty becomes a high priority of the world's governments, it is unlikely to go away. In the meantime, what can we, in the field of cancer, do to assist the most deprived of the world's populations, which have minimal health resources? (see figure 1).

The task of reaching out to communities with limited access to the usual forms of communication is daunting, and any approach needs to be multifaceted, possibly combined with other health and education programs and developed over many years. Educational efforts must be directed not only toward the poor (pamphlets and written advertisements, for example, are of no value in illiterate populations), but also toward the persons whose help they are most likely to seek. Unfortunately, many physicians, particularly those operating on a fee—for—service basis, pay less attention to their poorest patients. While subsidized care does exist, most patients in developing countries (more than 70% of the population in India, for example) receive health care from private practitioners and must pay for treatment they receive. Health care costs, particularly for cancer, can be prohibitively expensive, often considerably more than 100% of the family's income. Moreover, physicians in private practice generally function outside the governmental and academic systems in which consultation, continuing education, and other means of ensuring high standards of medicine exist. Health insurance programs, although strongly advocated by the World Health Organization and the World Bank, are not easy to establish among poor populations. Such programs should be pursued, however, and local authorities might best supervise them. Indeed, informal associations and reciprocal gift giving often exist in the poorest communities as a means of mitigating risk. These groups might form the basis for expanded, more formal health insurance programs. Coupling these with screening and educational programs would help to ensure that benefits accrue at a population level and that premium payments are considered not merely provision for possible future misfortune, but also for health services provided.

If the outer circles of populations are to be reached, and sustained improvements in cancer care made in these populations, the approaches must come largely through existing infrastructure, although external help in building capacity can make a critical difference. There are many excellent hospitals and cancer centers in developing countries, although not nearly enough to serve their populations adequately. In general, major cancer treatment facilities are found near the centers of population — essential in countries whose transportation systems may leave much to be desired, but creating added access problems for the rural poor. Because these centers are few, relative to the population size, they tend to be overwhelmed with patients. And because of the delays in diagnosis or in accessing skilled medical care, they are confronted with patients with much more advanced disease than would be encountered in an affluent country. Finally, because of the lack of health insurance programs, difficult policy decisions must be made regarding how best to use available funds. These decisions are made more difficult by the problem of treatment costs, particularly of imported drugs and drugs still under patent—which may remain beyond the reach of most patients in developing countries regardless of insurance schemes. This issue is put into some perspective by the dramatic differences in drug sales compared to population size in various world regions (see figure 2).

Figure 2

Just as aircraft passengers are instructed to put on their own oxygen masks before assisting others, it is important that the centers of excellence first strive for the highest standards and efficiency of services. When their resources are sufficient, they will be in a position to form local networks with smaller institutions in the region and to work with other organizations, including state and local authorities, to develop a portfolio of programs for dealing with the problems at their source. Like Dante, we cannot expect the journey to "Paradise" to be short or easy, nor will we always have a Virgil to guide us. But at least we can avoid being numbered among those who fail, not because of what they did, but because of what they did not do.