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. .-.-.-:-:-:-:-:-:-:-:-:-.-.-. . .. -:-::::-:-:-:-:-:-:-:-:-::::::::-:-.- ::--- :::-. ~ .-:-:-:-:-:-:-:-:---------------:-:-:-:-:-:-:-:-:-: . -:-:-. .-::-:-:::: ::-: :'::-:-::-. -:-:-:::::::::::::-:- :::-. I-:- : - - :-: : - - :-:: :.: :.! - - :.: :- : - - :-: ~ - - I -:.- . : .. - - - .:.-:-- -: - - .. -:- -.-.- .- ' 2----:-.- -:-:--:-- ::: Why Another Book on Women's Health? A large headline scowls from the front page of a metropolitan daily. Below it, a grainy photo captures a middle-aged man frowning over his bifocals. EXPERTS QUESTION SAFETY OF MAJOR BREAST CANCER STUDY, the heavy type proclaims. A line of smaller print identifies the man, a medical school professor, as a "leading critic of the tamoxifen trial." A blond movie actress beams at an even blonder toddler on an eye-level rack above a supermarket checkout counter. Over her head marches the bright-red name of a national women's magazine. Next to her, lines of variegated type promise a late bulletin about the Kennedy family, announce the advent of a surefire weight loss plan, and pose a pair of disquieting queries: WHAT TO DO ABOUT MENOPAUSE? IS HORMONE THERAPY FOR YOU? _ ssues involving women's health are everywhere these days. Ques tions once discussed only in the privacy of the consulting room, _ ~ matters formerly considered either too personal or too technical for general conversation, decisions that used to be left to experts, now pop up across kitchen tables, in parking lots, and over office coffee machines across the nation. How much the nation spends on what kinds of medical research, once an esoteric interest of academics, now inspires protest marches. Concern about reproductive diseases, once whispered among close friends, now finds expression in bits of ribbon pinned to lapels. The last decades have seen a truly startling change. From the 3

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I N H E R O WN R ~ G HT specialized concerns of a small number of activists, clinicians, and scholars, women's health issues have grown into a major preoccupation of political leaders, medical researchers, and the popular media. The first edition of the now-perennial bestseller, Our Bodies, Ourselves, constituted a daring departure from accepted thinking. A White House announcement that the First Lady faced breast cancer surgery created a national sensation, linking the President's family to the then-unprintable words "breast" and cc ,, cancer. A new generation of women began to develop a new sense of themselves as consumers of health care services. And the unprecedented official candor about Betty Ford's and, soon afterward, Second Lady Happy Rockefeller's, mastectomies made the subject instantly respectable, sent millions of women to seek mammograms, and sparked reformers to begin questioning the disfiguring orthodoxy of total breast removal. Today, as female physicians stream out of medical schools and residency programs in record numbers, health issues important to women have moved along with other formerly ignored issues like family leave and pay inequities to the forefront of national consciousness. Major dai- lies now headline developments in diseases once considered unfit for men- tion in family newspapers. Women's magazines delve into the choices open to informed health care consumers. Television newscasts highlight controversial research results. Bookstore shelves overflow with volumes on every aspect of the female mind and body. Videos, tapes, newsletters, computer bulletin boards, and every other available mode of communica- tion constantly add to the rising torrent of information, guidance, and . . Oplmon. So why should the Institute of Medicine (IOM), a scientific body chartered by the U.S. Congress to provide expert consultation on pressing public issues, enter so crowded a field? Why should an organiza- tion customarily devoted to detailed consideration of technical matters give a popular treatment to an already over-covered topic? And perhaps most significantly for the reader, why add yet another voice to the din? The most pressing reason is that din is exactly what all too often answers a thoughtful citizen's efforts to stay informed. As authors of particular books, advocates for selected diseases, and proponents of various theories compete on talk shows and in op-ed pieces and magazine articles

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C HA P T E R ~ ~ Why Another Book on Women's Health? for viewers' and readers' limited attention, no sense of priority or relative importance orders the discussion. Every disease appears equally dreadful, every threat equally dire, every risk equally grave. In the new world of health awareness, however, ordinary citizens are no longer patients shepherded by fatherly medical advisors but consumers of services and information in a competitive marketplace. Confronted with any impor- tant medical problem, ordinary people are increasingly encouraged, even required, to make the kind of decisions once the exclusive province of doctors. In this new atmosphere, understanding how to frame intelli- gent questions has become surpassingly important. What are the risks and benefits of various forms of birth control? What are the health costs of delaying childbearing or of proceeding with it too early? Should a meno- pausal woman take hormone replacement therapy? And if so, for how long? Should a breast cancer patient opt for lumpectomy or mastectomy? For post-surgical medication? Issues like these real, serious questions with real, serious, though not necessarily knowable, consequences face more and more people in our age of informed consent and increasingly imper- sonal care. Where once those without medical training left such matters in the hands of a trusted adviser who knew us personally and took a paternal- istic interest in our welfare, today, professionals increasingly expect lay people, frequently under extreme emotional stress, to quickly learn enough gynecology or oncology or cardiology to participate in the deliberations and make the final choices among available options. In this new age, then, anyone who has ever been or expects to be a patient, or who has ever had or expects to have responsibility for the health care of others, needs a framework to organize what they know, to give fragments of information the meaning and priority only possible as parts of a systematic body of understanding. Clearly, no untrained person can expect to acquire, nor can any popular book claim to deliver, the detailed, comprehensive grasp that a health professional has. But high-level expertise is not what best serves today's intelligent health care consumer. Rather, she or he needs a way of thinking about medical information, a way of sorting out claims and weighing results. How, for example, does one know if a drug is "safe" (considering that all medications have side effects and taking any at all 5

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I N H E R O WN R ~ G HT constitutes a bet on expected benefits over possible harm)? What are the major health threats a woman should take care to guard against (consider- ing that, contrary to popular impression, heart disease kills many more females than breast cancer)? What is the best way to counter obesity (remembering that some weight loss methods in themselves represent threats to health)? Providing a framework for thinking about such issues is what this book aims to do. Two circumstances spurred this effort, one relating to the sub- ject itself, the other to the nature of the IOM. Many of the topics that flash across the national consciousness and briefly flood the popular media are fads or frivolities. The current interest in women's health clearly is not. A number of the changes in thinking taking place not only among the general public but also among health professionals represent, at their intel- lectual base, a thoroughgoing and long overdue reassessment. The medical enterprise, both in scientific research and in clini- cal practice has traditionally viewed female lives and bodies through a lens of masculine experience and assumptions. Indeed, the name of the medi- cal specialty that studies female reproduction, gynecology, means "science of woman" in Greek. No corresponding specialty of "andrology" studies the distinctive reproductive features of men. Male reproduction falls in- stead under urology, literally, "the science of urine," which, according to a leading medical dictionary, encompasses "the study, diagnosis and treat- ment of diseases of the genitourinary tract, especially the urinary tract in both sexes and the genital organs in the male.") Male genitalia, in other words, form a subdivision of a larger, more general, bodily system, while female reproductive organs occupy a special realm, distinct from the body at large, and one that also just happens to define their owner's essential nature. The effort to remove this distorting lens, to see and treat the female person as a whole and normal human being in her own right, rather than as a subsidiary or deviant version of the dominant male, is already well under way. The need to incorporate female experience and perceptions into medical thinking has become obvious across the health care community. Informing the public of the issues at stake is basic to this effort of reexamination and reform. Realigning a field of knowledge, reformu 6

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C HA P T E R ~ ~ Why Another Book on Women's Health? rating an area of endeavor, requires a new architecture for thought and analysis. In the famous phrase of the historian of science Thomas Kuhn, it requires a "paradigm shift." Scholars and scientists have already begun sketching out a new paradigm for women's health, a new image of the physical and mental well-being of half the human race. To show how this new thinking applies to the lives of real people of both genders is the goal of this book. The Institute of Medicine brings to this effort two special re- sources, the breadth of its exposure to health issues and the depth of its expertise. Throughout its history, IOM has assembled committees of rec- ognized experts to study major health issues and has organized meetings to present the latest and most authoritative views in fast-moving research fields. A quarter-century of unbiased study and consensual decision mak- ing, besides creating a large body of trustworthy information, offers pro- tection from the vagaries of fashion and the extremes of ideology. In the changing world of women's health, as with many other major social changes, important and sometimes well-financed interests have lined up on various sides of various questions. In its many studies and meetings, IOM has striven for fair, balanced, and responsible consideration. A subject long central to the Institute's work has now moved to the center of the nation's attention. Concerns specific to women reproductive technology, breast cancer, osteoporosis, menopause now receive wide coverage. Issues shared with men but predominantly affect- ing women aging, depression, obesity, sexual harassment, child care- increasingly dominate the news. Newly salient policy questions, like the design of clinical trials, crop up in the popular media. Symbolizing and enhancing the new prominence of women's concerns, the Institute and its constituent body, the Food and Nutrition Board, have explored them in a variety of publications and at two major conferences. In December 1991, FNB examined nutrition audits effect on women's health. In October 1992, IOM used its annual meeting to take stock of gender as it relates to health and health care. Covered in both professional and popular media, these gatherings focused attention on factors that crucially affect the physical and mental well-being of women and girls around the world. Though the meetings involved differ- ent scholarly bodies and emphasized different scientific disciplines, both 7

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I N H E R O WN R ~ G HT sought answers to the same central questions: Which factors contribute to or detract fro~women's mental and physical well-being? How can that well-being be improved? What accounts for discrepancies in the health of men and women? How can inequities be corrected? Or, as a Food and Nutrition Board conference speaker, Susan Scrimshaw, Ph.D., professor and associate dean at the UCLA School of Public Health,* put it most succinctly, the question comes down to "Why women?" Why do the things that happen specifically to women happen to them and not to men? Why do they face numerous health risks much rarer among men breast cancer, eating disorders, high rates of anemia and depression, to name just a few? What is it about their lives that opens them to these problems? How can those conditions be improved? Three themes that form the leitmotifs of IOM work lead the way toward answers: different biologies and physiologies, divergent life courses, and unequal social statuses. Males and females have bodies that differ in important respects. They still have remarkably dissimilar experi- ences in growing up, during maturity, and as they age. And, despite the rapid social change of the last generation, they still play different roles in society and face different pressures and expectations. No one of these factors in itself completely explains such puzzles as women's higher morbidity but lower mortality, their greater susceptibility to depression, or the inadequate nourishment they receive in many parts of the world. Clearly, differences in the genders' patterns of health and illness arise both from physical factors like women's more responsive immune systems and from social factors like their greater expo- sure to children and the sick. The health care system also treats the gen- ders differently, for example, in its approach to cardiac illness. Dietary differences also carry important consequences. Com- mon conditions like anemia and osteoporosis arise from a combination of dietary and behavioral causes. The former occurs often among poorly nourished but frequently pregnant women, and the latter among those who consumed too little calcium in their youth and got too little exercise in maturity. A similar combination of food and lifestyle specifically, high fat and late childbearing is heavily implicated in the industrialized West *The affiliations cited for the speakers throughout this volume have not been updated ED.

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C HA P T E R ~ ~ Why Another Book on Women's Health? em countries' high rates of breast cancer. Along with their special social roles, women clearly face distinctive nutritional challenges, especially when the heavy demands of childbirth and nursing come on top of general requirements for good health. But beyond those uniquely feminine processes, a constellation of physiological and social factors conspires to threaten women's welfare. Many cultures erect specific obstacles that prevent females from eating adequately, barriers not equally applicable to males. In developing coun- tries, most women do heavy labor and endure repeated, closely spaced pregnancies but have less chance than men and children to eat what they need. In the developed world the ideal of slenderness takes hold before adolescence and persists into middle age and beyond, pressing in most severely during the very same adolescent and early adult years when a woman must lay down in her bones a supply of calcium to last her lifetime and when she conceives and bears her children. And in the United States the increasingly parlous state of young women a confusion of life goals compounded by increasing sexual pressure has brought on a growing rash of depression, addiction, and eating disorders. Each of these situations merits asking "Why women?" Each affords clues to the realities shaping female lives. From cases like these and from IOM's work on women's health emerge three overarching themes that form this book's intellectual frame- work. Health is the intersection of an individual's physical endowment and life experience. Except in very rare cases, no single factor determines the state of an individual's physical or mental health. Rather, physiology, diet, developmental history, emotional and intellec- tual experience, social opportunities, physical environment, and other ele- ments all enter the equation. A woman's health evolves across her entire life span. This statement deserves special note because, surprisingly enough, it rep- resents a departure from the traditional view of the female, which cen- tered on childbearing. Women's reproductive capacity has long formed a major focus of attention. Improving or controlling the ability to bear healthy babies has been the goal of much scientific and clinical work. The study of women's health has often paid more attention to the health of a 9

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I N H E R O WN R ~ G HT woman's children than to the mother herself and devoted more resources to improving their welfare than hers. In much of the developing world, it has focused on childbirth and lactation with little concern for the decades before and after. Central to the new woman-centered notion of women's health, however, and to this book, is the understanding that women's health concerns deserve to be addressed as they affect women, persons who have lives before and after the possibility of childbearing and whose well-being matters whether or not they ever bear children. As is also true for men, health status at every stage of life affects the stages that follow, often in complex, subtle, and unexpected ways. As more and more women live to older and older ages, the total shape of the female life span, of which reproduction constitutes only a limited period, must come into clearer view. "In 1988 . . . Ithel articulation of a 'life-cycle' approach to thinking about female health was novel and innovative," observes a ground-breaking report of IOM's Committee to Study Female Morbidity and Mortality in Sub-Saharan Africa.2 This perspective assumes the need to articulate the major causes of health status not solely in women of reproductive age, but in "an individual's entire life experience from birth to death, whether or not that includes reproduction."3 Women's life experiences and social roles differ from men's in ways that affect physical and mental health. These differ- ences bear heavily on many aspects of health, including such diverse issues as what and how much a woman eats, how and where she gets medical care, and whether the factors affecting her health get appropriate attention in research. Through its leadership role in medicine, IOM has over the years accumulated a large body of information and insight that illuminates many of the issues surrounding women's health today and tomorrow. This book endeavors to use that resource specifically, the findings of a variety of reports and conferences to explain what women (and men) need to know. 10

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C HA P T E R ~ ~ Why Another Book on Women's Health? NOTES 1. Stedman's Medical Dictionary, 25th ea., s.v. "urology." 2. In Her Lfetime: Female Morbidity and Mortality in Sub-Saharan Africa, 2. 3. Ibid, 3. 11

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