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Book Review                   

Mama better off dead?
Or just the failure of health care?

      By ROY WEHRLE

Laurie Kaye Abraham. Mama Might Be Better Off Dead: The Failure of Health Care in Urban America. Chicago and London: University of Chicago Press, 1993. Pp. 289 with appendix and notes. $22.50 (cloth).

The facts are brutal but unavoidable. Within the ghettos of American cities, nothing good can long endure. Decent people and well-intentioned programs are overwhelmed in these run-down, crime-ridden areas. Unfortunately, no single reform — whether of health care, education or crime control — can end this crisis. Only comprehensive change, building family and community cohesiveness and stability block by block, will succeed.

To describe the pitfalls of our present piecemeal approach to serving ghetto-dwellers' health needs, Laurie Kaye Abraham, an award-winning investigative reporter, invites us to share three years in the life of Jackie Banes, her grandmother Cora Jackson ("Mama") and her family in North Lawndale, one of Chicago's poorest neighborhoods. Abraham succeeds brilliantly in depicting their frustrations as they try to obtain adequate health care. The reader witnesses Jackie's heroic efforts to use the multitude of available programs and different methods of financing to secure appropriate treatment for her grandmother and other relatives. Jackie emerges as an intelligent, caring and hard-working woman who is defeated by the system presumably designed to serve her.

Academics and social planners deal in abstractions. In the health care field, two of these abstractions concern primary care delivery and personal responsibility for good health habits. As Abraham makes clear, however, such concepts have almost nothing to do with the reality of how health care is provided and used in poor urban areas. Primary care is just not there. Generally, local storefront doctors are "get rich" schemers out for themselves, a scandal that was clearly documented in the excellent series on Medicaid that ran in the Chicago Tribune in November of 1993. Furthermore, personal responsibility is not encouraged among inner city residents, many of whose lives are marked more by dependence than independence. Jackie's experience illustrates the limitations of both of these abstractions as descriptors of reality in the ghetto.

For Jackie's family, health care always arrived too late. Treatment was received only after acute illness had shown that medical attention was desperately needed. Cora Jackson's diabetes was so advanced that first her foot, then one of her legs, and finally her other leg had to be amputated. Jackie's husband, Robert Banes, suffered such an advanced case of diabetes that his kidneys failed; dialysis and a kidney transplant were required. Tommy Markham, Jackie's father, had a heart attack and complications followed. Why didn't they get better care through Medicare and Medicaid?

As Abraham shows, the obstacles to gaining appropriate care are formidable for the urban poor. Where are good doctors who will treat them? Which program will finance which kind of care? How can they obtain the necessary transportation for visits to health facilities? How can doctors' appointments be scheduled without knowing in advance precisely when during the month patients will become eligible for benefits? Many of these barriers complicated Jackie's attempts to seek help for her relatives, as the example of her grandmother illustrates.

Jackie learned that although Medicare would not pay for the adult diapers Cora Jackson needed, Medicaid would. After finally finding a company that would sell her these diapers, however, Jackie's relief was short-lived.

"The suburban medical company, Peiser's Medical Supplies and Services, refused to fill the order for the diapers. The clerk said she had no proof Peiser's would be reimbursed by Medicaid. When she punched Mrs. Jackson's name into the computer, 'spend-down not met' had popped onto the screen. Mrs. Jackson's $619 monthly income is too high for her to qualify outright for Medicaid. Her spend-down is akin to a deductible, a set amount of money she must spend every month on medical needs before Medicaid kicks in." At this point Jackie became confused. She had a letter from Public Aid saying that Cora had become eligible nine days earlier. Sister Mary Ellen, Cora's visiting nurse, called Public Aid to check on her status. She "guessed that Mrs. Jackson's spend-down problem stemmed from a delay at IDPA [Illinois Department of Public Aid] in entering her eligibility into the computer. But she could only guess because no one answered the phone."

Equally frustrating was Jackie's experience when she needed to get her grandmother a doctor's appointment immediately because of her high blood pressure. She could not arrange the visit expeditiously under existing eligibility requirements. "Two days can make a big difference. People become eligible for a green card on the day of the month that their medical bills and receipts show they have met their spend-down. If Mrs. Jackson

28/May 1994/Illinois Issues

meets her spend-down on the twentieth of the month, she qualifies that day for the rest of the month. So ten days after she becomes eligible, her coverage expires. As Jackie says, 'By the time I get the card, it's time to do it again.'" Thus each potential but partial solution creates a new problem.

The reader may wonder if the Banes family, under such trying circumstances, shouldn't have taken more responsibility for living healthy lives in the first place. To her credit, Abraham explores the implications of this response. Robert Banes's kidney failure was caused in part by his abuse of alcohol and drugs, but no one had ever bothered to warn him about the likely consequences of his fast lifestyle until the damage was done. Similarly, Tommy Markham may have suffered a stroke at 48 partly because he smoked and drank, and because he didn't consider, or possibly even understand, the consequences of discontinuing his medication for hypertension. Abraham reports that even after his stroke "he still smokes, devours fried meats and other fatty foods and rarely exercises." Cora Jackson was never told that she had congestive heart failure. As these instances show, in the absence of more systematic health information and preventive health care, taking personal responsibility for lifestyle choices remains a middle class concept devoid of meaning for many who are down and out and who must survive by their wits day to day.

This is an exceptionally well-written, clear-sighted and sensitive analysis of the incredibly fragmented health care system that serves the poor in America's inner cities. As the book closes, Abraham achieves a tour de force. For the first time, through the eyes of Cora's church friends as they attend her funeral, the reader gets a glimpse of the jovial and loving person she had been before her struggle with diabetes and the health care bureaucracy brought her down. It is a stark example of the high human cost of our troubled health care system and an urgent reminder that the sickness of this system must be cured as part of any larger regeneration of our society.

Roy Wehrle, professor emeritus of economics at Sangamon State University, is CEO of Health Economics and Market Analysis Inc. of Springfield.

May 1994/Illinois Issues/29