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. Office of Research Office of the Direci National Institutei
Report of the
National Institutes of Health: Opportunities for Research on Women's Health
September 4-6, 1991 Hunt Valley, Maryland
With a Foreword by Dr. Bemadine Healy Director of the National Institutes of Health
Part One
Foreword ix
Bernadine Healy, M.D., Director,
National Institutes of Health
Preface xv
Vivian W. Finn, M.D., Director, Office of Research on Women’s Health
Introduction 1
Ruth L. Kirschstein, M.D., Director, National Institute of General Medical Sciences and Former Acting Director, Office of Research on Women’s Health
Executive Summary 7
Part Two
Overview 39
Morbidity and Mortality in Women ... 51
Ethical and Legal Issues:
Women as Research Subjects 65
Women in Biomedical Research 75
Reports of the Working Groups 81
Life Span
*
Birth to Young Adulthood 83
Young Adulthood to Perimenopausal Years . . .91
Perimenopausal to Mature Years 119
Mature Years 123
Crosscutting Science
Reproductive Biology 133
Early Developmental Biology 147
Aging Processes 161
Cardiovascular Function and Disease . . ... 171
Malignancy 185
Immune Function and Infectious Diseases . . 195
Appendices 207
Hi
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*
*
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♦
Foreword
Bernadine Healy, M.D., Director,
National Institutes of Health
m n recent years, Americans have experienced JL an awakening about the importance of women’s health: the importance of good health not only to women themselves but to our society as a whole. This awakening has been spear- headed by advocacy groups and members of Con- gress, who have called for more research into the causes, treatments, and prevention of diseases that rob women of their health. The National Institutes of Health (NIH), the Federal agency charged with extending healthy life and reducing the burdens of illness and disability for all Ameri- cans through scientific research, has heard this call and responded with an awakening of its own.
In 1990 the NIH established, within the Office of the Director, the Office of Research on Women’s Health (ORWH), headed by Dr. Vivian Finn. Among other activities designed to promote women’s health, the ORWH is charged with ensur- ing that all clinical trials supported by the NIH include adequate numbers of women. Over the past year, the ORWH has convened two major conferences on opportunities in women’s health research and opportunities for women in biomedi- cal careers. This report is the result of that first conference, held in September of 1991.
This report sets forth an agenda for national research efforts in women’s health. In crafting the agenda, workshop participants focused on the end point of NIH’s efforts: improved health for all women, regardless of their race, socioeconomic status, or age. As Director of the NIH, let me point out that the underl3dng principle of NIH’s efforts in women’s health research is fundamental to the overall mission of the NIH and is best expressed in our motto, “Science to extend healthy life” — the life of each and every citizen, whether male or female.
The NIH has placed women’s health high on its research agenda. To gain a comprehensive view of NIH’s efforts in women’s health research, it is essential to understand these efforts not just within the context of the NIH, the world’s largest supporter of biomedical research, but within an historical context as well.
Historical Context of the Awakening
Throughout history, women have generally been viewed as inferior to men. Although differences between the sexes were readily acknowledged, the characteristics attributed to women were not always laudable or even biologically correct. Not surprisingly, these social attitudes influenced the
IX
Opportunities for Research on Women's Health
medical community’s treatment of women patients. For example, as recently as the 1960s, faculty at our Nation’s leading medical schools taught future physicians that all women should have their children between the ages of 18 and 25. Illnesses that women developed in their 30s and 40s, such as endometriosis, were seen as pun- ishment for delaying or not having children. Need- less to say, this medical judgment owed more to prevailing social attitudes than to science.
The same social attitudes influenced the selection of study populations in biomedical research. As late as the 1980s, a major study on the preventive effects of aspirin in treating coronary disease involved some 22,000 men, but not a single woman. Another study looked at the role of estro- gen in preventing heart disease, but only in men.
Such studies have suffered from the underlying assumption that men are the normative stan- dard, and such studies have served to reinforce the myth that heart disease is unique to men. I refer to this practice as the Yentl syndrome.^ The fact is that heart disease has long been the lead- ing cause of death for women in the United States. Clearly, by the 1990s it was time for medi- cal researchers to wake up to this fact, and for taxpayer-supported research to reflect the fact that women pay taxes, too.
Closing the Knowledge Gaps for a More Integrated View of Health
Shortly after becoming Director of the NIH in 1991, 1 committed the agency to a program aimed at closing the startling gaps that still exist in our knowledge of women’s health. The Women’s Health Initiative, a 14-year $625 million effort, will study some 150,000 women at 45 clinical cen- ters across the United States and will be the larg- est clinical study ever undertaken in this country on the health of either men or women. The study’s protocol is described by the director of the Women’s Health Initiative, Dr. William Harlan, in Appendix 1 of this report.
The initiative has two closely related goals. The first of these is to decrease the prevalence of car- diovascular disease, cancer (especially breast can-
cer), and osteoporosis among women. The initia- tive will develop recommendations on diet, hor- mone replacement therapy, diet supplements, and exercise: practical information that can be used by physicians and by women of all ethnic groups and socioeconomic classes. The second, related goal is to evaluate the effectiveness of vari- ous strategies for motivating older women to adopt health-enhancing behaviors.
With its emphasis on the relationship between behavior and health, the Women’s Health Initia- tive is particularly timely. Congress recently acted to bring the research components of the Alcohol, Drug Abuse, and Mental Health Adminis- tration (ADAMHA) into the NIH. This merger will allow for increased collaboration in NIH’s efforts to promote a more integrated view of women’s health. As described in this report, addic- tions and depression exact a tremendous toll on women in our society, while diet, smoking, exer- cise, and other behaviors obviously have a major influence on health. This report also notes that, in 1990, the highest proportional increase in AIDS occurred among women, making AIDS the leading cause of death among women ages 15 to 49 in several American cities. The Women’s Health Initiative and new integration of NIH and ADAMHA will yield valuable information on the best ways to encourage women to change their behavior to preserve good health.
The Women’s Health Initiative, which will begin shortly after the release of this report, has received strong endorsement from individuals and groups nationwide. Congress has generously provided sufficient funding for the first year of the study, and in addition to congressional sup- port, there has been overwhelming support and offers of assistance from physicians, their patients and patients’ families, laboratories, uni- versities, and individual researchers. One outside organization even offered to donate funding.
Media coverage of the initiative has also been gratifyingly extensive.
The NIH launched the Women’s Health Initiative with full recognition of the fact that closing the vast knowledge gaps pertaining to the health of
Foreword
women requires a commitment from all the Insti- tutes and Centers of the NIH. The leaders of the Institutes and Centers have responded to the ini- tiative with great enthusiasm and have selected women’s health as one of the areas of research to be given special emphasis in the NIH’s new strate- gic plan, which will be released in the fall of 1992.
In addition to providing women with practical information on how to preserve their health, the Women’s Health Initiative will provide the scien- tific community with valuable knowledge on the design and implementation of future clinical stud- ies. Because the initiative will recruit women across geographic, racial, ethnic, and socioeco- nomic lines, it will yield a wealth of information on how best to recruit and retain women partici- pants in clinical trials. Such information will be particularly useful in helping researchers work with segments of our society that have not pre- viously been included in most biomedical research.
Women: Filling the Gaps in Leadership
In the 1960s, men outnumbered women in college by a ratio of almost two to one. Today, there are approximately one million more women than men stud3dng in colleges and universities; more important, it is projected that by the year 2000, more women than men will be earning doctorate degrees. Entrants to medical school reflect the same national trend: during the past 5 years, the number of men going to medical school has fallen by more than 9 percent while the number of women has increased by the same percentage.
(See my editorial, “Women in Science: from Panes to Ceiling.” ) Enrollment of Black women has increased by 23 percent and Asian women by more than 100 percent. In fact, were it not for this trend in women offsetting falling male enroll- ment, our Nation could face a brainpower short- age in medicine and biomedical research at a time when the complex nature of science demands the energies and resources of a diverse talent base.
The national trends in education hold great prom- ise for research on women’s health. There can be no question that an agenda for women’s health research would be enhanced and gender and eth-
nic disparities in medical treatment and research reduced not only by increasing the numbers of women and minorities in medicine, but also by encouraging them to seek leadership positions in teaching, research, and the practice of medicine.
Unfortunately, throughout their academic and professional careers, women researchers receive more negative treatment than their male counter- parts, as documented by Jonathan Cole in his recent book. The Outer Circle: Women in the Sci- entific Community . Cole describes what he refers to as positive and negative kinetic reactions or “kicks” that occur at every stage in a career. Over- all, he found that women in science experience far too few positive kicks, that is, the rewards and recognition that build the self-confidence needed to conduct research and seek positions of leader- ship.
In an effort to provide a positive kick for women in biomedical careers, the ORWH sponsored a workshop last June that brought together 450 women and men ranging from high school stu- dents to senior executives and leaders in science and politics to discuss how, on a national scale, we can encourage, maintain, and promote women in scientific and medical careers. Just as the awakening about research on women’s health did not gain national momentum until a number of women leaders in and outside of Congress took their view to the American people, so the NIH, through the ORWH, is taking the lead in foster- ing awareness about the need to increase opportu- nities for women and minorities in biomedical careers. Recommendations from the workshop. Women in Biomedical Careers: Dynamics of Change, Strategies for the 21st Century, will be published early in 1993.
Through the ORWH and the Women’s Health Ini- tiative, the NIH is making good on our commit- ment to helping all of the people of the United States enjoy better health. But we need the help of the biomedical community to achieve our goals. We hope that this report will serve as a call to arms for medical researchers nationwide to pur- sue neglected topics in women’s health research. Each gap in knowledge that it describes can be
xi
Opportunities for Research on Women’s Health
read as an invitation to fill that gap. Each health crisis that it describes is a call for researchers and practitioners to alleviate that crisis. Each rec- ommendation is a challenge for leaders of the bio- medical research community to inspire others to action.
Political pundits have referred to 1992 as the year when women began to make a difference at the polls. In the future, I hope that many in the biomedical community will remember 1992 as the
year that they heeded NIH’s call to arms and began to make a difference in women’s health.
References
1. Healy, B. “The Yentl Syndrome,” New England Journal of Medicine 325:274-276 (1991).
2. Healy, B. “Women in Science: from Panes to Ceiling,” Science 255:1333 (1992).
XU
ISa
Preface
Vivian W. Finn, M.D., Director, Office of Research on Women’s Health
m he Office of Research on Women’s Health (ORWH) at the National Institutes of Health (NTH) was estabhshed in September 1990 as part of a vigorous and ongoing effort to strengthen and enhance research related to diseases, disorders, and conditions that affect women and to ensure that women are appropriately represented in biomedical and biobehavioral research studies. Dr. Ruth Kirschstein was appointed Acting Director of this new office.
Initiating actions to achieve this mandate, the ORWH sponsored two critical activities: a public hearing and a workshop, Opporhmities for Research on Women’s Health. The public hearing, held in June 1991, afforded the opportunity for represen- tatives of over 90 organizations interested in women’s health to shape the direction of the workshop and, ultimately, the ORWH Research Agenda on Women’s Health. The final results of that workshop — convened in Hunt Valley, Maryland, in September 1991 — are presented here.
Under Dr. Kirschstein’s leadership, and in collabo- ration with the Task Force on Opportunities for Research on Women’s Health, the workshop
developed into a multidisciplinary effort focused on biomedical and biobehavioral issues germane to women’s health across the life span.
Part One of this report is designed for the lay pub- lic and for those seeking an overview and high- lights of the scientific reports developed at the workshop. In her Foreword, Dr. Bemadine Healy, Director of NIH, explains women’s health research as integral to the mission of the NIH and describes the historical context of the recent awakening of our Nation to the issues of women’s health. In her Introduction, Dr. Kirschstein places the development of the workshop in the context of the mission of the Office of Research on Women’s Health and highlights the events of the past decade that led to the current emphasis on the issues relevant to women’s health. The Execu- tive Summary is a synopsis of the papers and working group reports which constitute Part Two of this document. For each report, the synopsis highlights the principal issues identified by the working group, and converts their highly techni- cal recommendations for research into the form of general research questions underlying the recom- mendations.
XV
Opportunities for Research on Women’s Health
Part Two of this report presents (a) the background papers on morbidity and mortality in women, the issue of women as research subjects, and women’s careers in biomedical sciences, and (b) the full texts of the reports of the 10 working groups. An Over- view by the workshop cochairs, Drs. William R. Hazzard and Mary Lake Polan, introduces the major themes and issues treated by each working gi'oup. Drs. Hazzard and Polan provided leader- ship throughout the planning and implementation phases of the workshop. Quotations from public hearing and workshop participants are interspersed throughout the text to highlight the concerns expressed in the public testimony and the responses of the work- shop to those concerns.
This report represents an agenda for the NIH to utilize in addressing the gaps in knowledge about women’s health through enhancing and imple- menting biomedical and biobehavioral research during the next decade. This is the challenge that we face as we launch women’s health into the 21st century. We invite and urge you to join us in this exciting and exhilarating challenge, for we must unify our collective expertise, abilities, wisdom, and spirit in this quest for knowledge about women’s health if we are to succeed.
Vivian W. Pinn, M.D.
XVI
Introduction
Introduction
Based on remarks by Ruth L. Kirschstein, M.D., Director, National Institute of General Medical Sciences and Former Acting Director, Office of Research on
Women’s Health
M n 1983, the Assistant Secretary for Health established a Public Health Service Task Force on Women’s Health Issues. One of its prin- cipal accomplishments was the preparation of a two-volume report, Women’s Health: Report of the Public Health Service Task Force on Women’s Health Issues. The first part of this report was published in the January/February 1985 issue of Public Health Reports', volume II was issued as a separate publication from the Department of Health and Human Services in October 1987.
The report discussed a broad array of women’s health issues across the life stages, particularly in the context of the sociological changes in the United States taking place in the latter years of the 20th century. One of the most important rec- ommendations in the task force report was that “biomedical and behavioral research should be expanded to ensure emphasis on conditions and diseases unique to, or more prevalent in, women in all age groups.”
Since that time, the issue of women’s health, in a political, social, and biomedical sense, has come a long way. Among the most significant milestones was the creation of a new Office of Research on
Women’s Health (ORWH) within the Office of the Director of the National Institutes of Health (NIH) in September 1990. The mandate of this new office has been to strengthen and enhance the prevention, diagnosis, and treatment of illness in women and to enhance research related to diseases and condi- tions that affect women.
As part of its overall mandate, the ORWH has been charged with three critical objectives. The first is to ensure that, in the performance of any research supported by the NIH, the important issues that pertain to women’s health are adequately addressed. These relate to diseases, disorders, and conditions that are unique to, more prevalent among, or far more serious in women, or for which there are different risk factors or interventions for women than for men.
The second objective is to ensure appropriate par- ticipation of women in clinical research, particu- larly in clinical trials.
The third key objective is to foster the increased enrollment of women in biomedical research — especially in pivotal decision-making roles within both clinical medicine and the research environment.
1
I
Opportunities for Research on Women’s Health
Towards Achieving the Objectives
Major steps have been taken at the NIH during the last year toward realizing these objectives.
For example, to ensure that women are included in study populations according to the stipulations set forth as its formal policy, the NIH published an expanded Policy Notice in the August 24, 1990, NIH Guide to Grants and Contracts, which more fully explains the policy as well as plans for implementation, and also issued an Instruction and Information Memorandum to all staff regard- ing this policy. Within the ORWH, a data-based tracking system has been developed to monitor the enrollment of women in clinical trials and epide- miologic studies. The NIH has stated that, start- ing with the February 1991 reviews for scientific merit, no Public Health Service grant applications will be accepted unless women are adequately rep- resented in planned clinical research, except in instances for which compelling justification can be provided.
To help answer broader questions, the ORWH arranged with the Institute of Medicine to pro- vide assistance in addressing the legal and ethi- cal barriers to including women in clinical studies. Among several pressing questions per- taining to this issue is whether or not it is possi- ble to overcome the problems related to potential fetal damage, safety in using therapeutic drugs in women of childbearing age, and liability when such women are included in clinical research.
To address the issues of recruiting and promoting women in scientific and medical careers, the ORWH initiated a series of activities during 1992 that included the sponsorship of a major confer- ence on careers and career development for women in biomedical science. The ORWH also is providing support to the Committee on Women in Science and Engineering of the National Acad- emy of Sciences, which is developing a program to achieve greater participation of women in science.
Further, the ORWH functions as a catalyst and a facilitator in enhancing research on women’s health by providing supplemental funds to other NIH com- ponents to augment new research initiatives or
expand current studies in order to address high- priority areas regarding the health of women.
As one of its most important activities in 1991, the ORWH established an NIH Task Force on Oppor- tunities for Research on Women’s Health. The charge to this task force has been to assess the cur- rent status of research on women’s health, iden- tify scientific research opportunities and gaps in knowledge, and recommend a comprehensive trans- NIH plan for future directions in research on the health of America’s women. The principal objective of the task force is to devise a research agenda that will guide the direction of, as well as the funding priorities regarding, research on the health of women throughout the next decade. During the year, the task force held a number of meetings.
An important goal of the meetings was to solicit the widest possible scope of opinion regarding the research agenda both from within the NIH and from the external scientific and lay communities.
Public Hearings
June 12 and 13, 1991
To collect comprehensive information on the cur- rent needs in women’s research and gain perspec- tive on the full spectrum of those needs, the ORWH held a public hearing on June 12 and 13, 1991, during which advocates for women’s health and representatives of scientific and medical orga- nizations were given an opportunity to provide input into the research agenda and the plans for the scientific workshop.
An announcement in the March 22, 1991, Federal Register solicited both oral and written testimony from experts speaking for the many groups that address issues pertaining to research in women’s health. Representatives from more than 60 orga- nizations across the country came to the NIH to present their statements; more than 40 others submitted written testimony for the record.
A large portion of that testimony emphasized the need to accord priorities to cancer prevention (especially breast cancer), cardiovascular dis- ease, and osteoporosis. Considerable concern was expressed also about autoimmune diseases that affect women in particular. Witnesses and task
2
Introduction
force members alike noted the problems that may result from excluding women from clinical trials. Several of those who testified mentioned the cur- rent lack of knowledge regarding the complex hor- monal cycles of women and, in particular, how these changes may affect absorption, disposition, action, and elimination of drugs. Witnesses also recommended that there be new research initia- tives on sexually transmitted diseases (STDs), work site safety, domestic violence, AIDs, and pre- and postnatal care — with a focus on the health of the mother. Other witnesses emphasized the need to develop effective prevention strategies, espe- cially in the areas of bone disorders. A number of individuals commented on the lack of behavioral research as well as the dearth of data on the health of Black and Hispanic women — with an emphasis on the socioeconomic factors that under- lie many prevalent health problems.
Workshop on Opportunities for Research on Women’s Health
The contributions, commitment, and specific rec- ommendations of those who presented testimony provided important guidance toward planning the Workshop on Opportunities for Research on Women’s Health, and also helped to determine many of the particular scientific areas addressed in the course of the 3-day workshop held in Hunt Valley, Maryland, September 4-6, 1991.
Participants at the workshop included experts in the fields of basic and clinical sciences, practition- ers interested in women’s health, and representa- tives of women’s organizations.
The purpose of the workshop was to arrive at spe- cific, workable recommendations regarding research activities on behalf of all the women in the United States, after consideration of the broadest possible range of issues. To achieve this purpose, the workshop utilized a unique design. According to this design, participants were assigned to working group sessions in two major areas: (1) the major divisions of a woman’s life span and (2) the scientific issues, diseases, and impairments that might affect her health and well-being during that life span.
Participants who addressed the Life Span area set the stage for the deliberations of the Crosscut- ting Science Working Groups by providing a broad perspective regarding the concerns that are intrinsic to every woman during each segment of her life from birth to death. Group discussions were divided into Birth to Young Adulthood, Young Adulthood to the Perimenopausal Years, Perimenopausal to Mature Years, and Mature Years. For the second area. Crosscutting Science working groups addressed the following topics: Repro- ductive Biology, Early Developmental Biology, Aging Processes, Cardiovascular Function and Disease, Malignancy, and Immune Function and Infectious Diseases. The working groups assessed the current status of women’s health, identified research opportunities and gaps in research, and recommended approaches and options for taking advantage of the most promising of these opportu- nities.
The workshop participants have thereby estab- lished a foundation for an NIH-wide research agenda to attain significant progress against the diseases and disorders that place a particular bur- den on women. This research agenda, which will guide planning efforts at the NIH for the next sev- eral decades, is critical to improving the quality of life for all the Nation’s women.
Because the workshop was sponsored by the NIH, the primary focus of the working groups’ efforts was on the biomedical aspect of the issues. None- theless, in their discussions, participants recog- nized the importance of considering the socioeconomic, legal, and ethical issues that impinge upon health and disease.
Scope of This Report
This report sets forth the research recommenda- tions developed by the working groups in both the Life Span and Crosscutting Science areas. Each working group’s report addresses:
• Key issues (including morbidity and mortality data for the most important diseases and disor- ders within its parameters)
3
I
Opportunities for Research on Women’s Health
• Gaps in knowledge for which reseaj'ch is needed
• Major scientific findings of current relevance for future research
• Specific research recommendations.
The issues that bear upon biomedical research on women’s health are inextricably linked to two of the principal objectives of the ORWH: ensuring appropriate participation of women in clinical research, especially clinical trials, and increasing the numbers of women in biomedical research careers. The workshop therefore included several formal presentations and considerable discussion on these issues. Highlights from these presenta- tions and related public commentary are also included in this report.
A Comprehensive Effort
An overarching principle, guiding all the efforts of the ORWH, is the conviction that biomedical research must be targeted to all of America’s
women, of all races, all ages, and all socioeco- nomic and ethnic groups. Further, while the NIH can address only one part of the research puzzle, the ORWH recognizes that research needs do not exist in isolation; they are tied inextricably to other critical issues such as access to health care and insurance coverage. Finally, the ORWH also realizes that researchers must make more inten- sive efforts to address the health needs of the whole woman, interweaving both medical and behavioral issues — the body and the mind.
Closing the gaps in knowledge regarding women’s health may take several years of intensive effort. Those who are impatient for results with immedi- ate clinical applicability may experience difficulty understanding this. However, by adhering to the research agenda outlined in this report, the NIH can make steady and measurable progress toward closing these gaps and thereby achieve real gains toward bettering the health of all women in the United States. Such progress in the improvement of their health is precisely what the women in this country amply deserve.
4
Executive Summary
Introduction
At the end of the 1980s, irrefutable national data and statistics pointed to a crisis in women’s health: a crisis that has stunned citizens, policy- makers, and the biomedical community. As a Nation, we have long known that three diseases — heart disease, cancer, and stroke — are the major killers of men and women alike. Currently, the number of women who die each year from these diseases are as follows:
#1 Heart Disease: 365,625 deaths each year #2 Cancer: 232,815 deaths each year #3 Stroke: 88,220 deaths each year*^
The starthng realization is that most of the biomed- ical knowledge about the causes, expression, and treatment of these diseases derives from studies of men and is applied to women with the supposi- tion that there are no differences. During recent years we looked at the data from a different per-
* In some cases, data presented in this publication are different from those presented in the original working group reports because in the year that has passed since the presentation of these reports, new data have become available. These reports underwent review and revisions with participation and final approval by the cochairs of the respective working groups.
spective. We asked if there are differences in the health of men and women. As the statistics on death and disease specific to women were inte- grated and interpreted, concerned individuals became acutely aware that health problems spe- cific to women are worsening and that we cur- rently do not have all the knowledge necessary to reverse this trend. The following issues are now glar- ingly vmdeniable truths:
• Women will constitute the larger popula- tion and will be the most susceptible to dis- ease in the future.
• Overall, women have worse health than men.
• Certain health problems are more preva- lent in women than in men.
• Certain health problems are unique to women or affect women differently than they do men.
To focus the biomedical research community on these issues of women’s health and to garner their knowledge into a comprehensive plan about
7
Opportunities for Research on Women’s Health
how to systematically and expeditiously address those issues, the Office of Research on Women’s Health sponsored the Workshop on Opportunities for Research on Women’s Health. The goal of both this workshop and the series of events pi'eceding it was to develop a comprehensive research agenda to investigate women’s health issues.
Setting a Research Agenda
As health needs become more widespread in the Nation and funding becomes less available, the goal of solving the health problems facing women must be considered in the design of biomedical research studies. Solving a health problem entails a four- step process (these steps may be simultaneous): recognition, response, research, and reversal.
Recognition
First is recognition of the problem. Recognition usually occurs when enough data are available to show a trend, either in rates of disease or of death from disease. The trends may occur among the entire population or within subgroups of the popu- lation. The subgroups may be described by such factors as age, sex, ethnicity, race, geographical residence, income, and education level. The data sources typically used for health trends are the U.S. Census (every 10 years), hospital records, insurance company data, epidemiologic studies (studies of patterns of disease and behaviors among populations), and other population studies conducted by the National Center for Health Statistics.
Even with modern methods of data collection and analysis, recognizing and, more so, forecasting health trends are extremely difficult in a society as ethnically and behaviorally complex and as rapidly changing as that of the United States. Identifying the cause-and-effect relationships between disease trends, social change, personal behaviors, cultural composition, and biomedical knowledge is extraordinarily difficult. Assump- tions based on logically predicted population pat- terns may or may not prove to be accurate.
As the nature of our society has changed, so have the behaviors of the population and so have the types of diseases that strike and kill us. At the end of the past century, infectious diseases were the greatest threat; later these were superseded
by heart disease, then cancer, both of which have behavioral and genetic causes; now, with AIDS, infectious disease once again looms as an epi- demic. In the future, other disease outbreaks may literally catch us by surprise.
ISSUE
Women Will Constitute the Larger Population and Will Be the Most Susceptible to Disease in the Future.
Gathering and analyzing data takes time and is performed in cycles, and therefore we sometimes recognize the emergence of a trend only after it is well underway. Such was the case for the observa- tions about women’s health issues. Perhaps another reason for the lag of recognition of the trend in women’s health issues is that historically throughout the 20th century, women have had a longer life expectancy than men. For example, for all races in 1900, life expectancy was 46.3 years for men and 48.3 for women; in 1989, 71.8 and 78.6.^ Figure 1 and Table 1 show the life expec- tancy for men and women according to race.
Table 1.^
Life Expectancy — 1989
Men Women
Total Population Whites Blacks Hispanics Native Americans Asian Pacific Islanders
71.8 years
72.7
64.8 69.6
not available not available
78.6 years 79.2 73.5 77.1
not available not available
At face value, these statistics sound like good news for women; but in fact, interpreted in the context of the future and of certain disease trends, they are ominous. Unfortunately, these figures demonstrate that women, in increasing numbers and more so than men, will be facing the
8
Executive Summary
Figure 1.
Life Expectancy at Birth According to Race and Sex, United States, 1970-1988
80
75
70 . ^
Expected ^
age ^ '
- White female
55 White male
Black male 50
1970 1975 1980 1985 1990
Year
Source: National Center for Health Statistics. Health United States, 1990. DHHS Pub. No.
(PHS) 91 -1 232. Hyattsville. Maryland: Public Health Service, 1 991.
Table 2."
Percentage of Women Within the Aging Population
|
Age 65+ |
Age 85+ |
|
|
1900 |
49.5% |
55.6% |
|
1980 |
59.7% |
69.6% |
|
1990 |
59.7% |
72.0% |
|
2020 |
60.0% |
12>.Q% |
health problems that accompany old age, for example, osteoporosis and Alzheimer’s disease. In 1900, only 4% of the population was age 65 and over and only 0.2% was over age 85; by 1985, per- centages had risen sharply to 12% and 1.1%, respectively.^ In 1900, women constituted 49.5% of the group over age 65, and in 1980, 59.7%.
Even more dramatic, they now constitute 72% of the group over age 85.^ Projections indicate that in the year 2020, there wiU be 69 men for every 100 women at age 65, and 36 men per 100 women at age 85.^ Table 2 shows the growth of women as the aging majority in our Nation.
:■ . IS StJE^
Overall, Women Have Worse Health Than Men.
Already, women requiring care in nursing homes or personal care facilities outnumber men three to one (963,900 women and 334,400 men in 1985). In 1990, of the 7 million women over age 75, nearly 2 million were either unable or limited in their ability to carry on major activities.®
Throughout their lives, as shown by statistics, the quality of life for women lags behind that for men: women have more acute symptoms, chronic condi- tions, and short- and long-term disabilities aris- ing from health problems.
• Women’s activities are limited by health prob- lems approximately 25% more days each year than are men’s activities.^
• Women are bedridden 35% more days than men because of infective/parasitic diseases, respiratory diseases, digestive system conditions, injuries, and other acute conditions.
These statistics are true even when reproductive problems are eliminated from the calculations.
Certain Health Problems Are More Prevalent in Women Than in Men.
Cardiovascular Disease. Nearly 90,000 women die of stroke each year. Stroke accounts for a higher percentage of deaths among women than men in all stages of life.
• Half of all women, but only 31% of men, who have heart attacks die within a year.^^
• Approximately 90% of all heart disease deaths among women occur after menopause.
• One in 9 women ages 45-64 has some clinical cardiovascular disease, rising to 1 in 3 at age 65 and older.
Mental Disorders. The rate of affective disorders is almost twice that for women, about 7%, com- pared with men.^^ In elderly women, the preva-
. 13
lence of depression is 3.64% versus 1% in men.
9
Opportunities for Research on Women's Health
Alzheimer’s Disease. Occurrence of this disease is higher among women than men, and it increases with age — dramatically so after age 85.
Osteoporosis.
• Osteoporosis affects over 24 million Americans, primarily women.
• Osteoporosis affects one-third to one-half of all postmenopausal women.
• The rates for osteoporosis increase dramati- cally for women with age, as shown in Table 3.
Table 3.'"
Rates of Osteoporosis in Women
|
Age Group |
Rate |
|
45-49 |
17.9% |
|
50-54 |
39.2% |
|
55-59 |
57.7% |
|
60-64 |
65.6% |
|
65-69 |
73.5% |
|
75-1- |
89.0% |
• Hip fractures are the most serious consequence of osteoporosis. Each year, 250,000 people are hospitalized with hip fractures and are tempo- rarily disabled. About one-third will become totally dependent, and one-half will never walk independently again.
• Osteoporosis causes 1.3 million bone fractures
14
every year.
• Annually, 500,000 vertebrae fractures occur. Nearly one-third of women over age 65 will suf- fer at least one vertebral fracture.
Sexually Transmitted Diseases.
• Each year, 6 million women in the United States, half of whom are teenagers, acquire a sexually transmitted disease.
• Fifteen to 20 million women are chronically infected with either genital herpes or human papillomavirus (HPV) infections.^®
• Women are the fastest growing population with AIDS; IV drug abuse and heterosexual contact are the primary modes of transmission (Figures 2 and 3).
Figure 2.
AIDS Cases Through Heterosexual Contact With Persons With, or at High Risk for, HIV Infection
2500
2250 Female
Year
"Figures are based on cases reported through March 1991 and adjusted for reporting delays. Source: M/WIW40 (22): 357-9, 1991.
Figure 3.
AIDS in Women by Exposure Category Cases Reported 1987 Through 1991
3000 Injecting Drug Use
Source: Office of AIDS Research, National Institutes of Health.
10
Executive Summary
Immunologic Diseases.
• Autoimmune thyroid diseases have a 15:1 ratio of women to men/^
• Rheumatoid arthritis has a 3:1 ratio of women to men. Rheumatoid arthritis leads to disabil- ity and decreased life expectancy.
• Systemic lupus er5dhematosus (SLE) occurs nine times more often in women than men. There are 500,000 cases of SLE in the United States.
• Systemic sclerosis affects women four times as
r. 17
often as men.
• Diabetes mellitus and multiple sclerosis occur more often in women.
Disability.
• More women than men of every age group report or seek care for illness and disability.
• More women than men seek care for acute con- ditions and short-term disabilities that occur during the reproductive years (ages 18-44). For example, in 1985, for every 100 persons, women had 49.7 bouts of influenza, men 37.0; women had 30.7 common colds, men 21.4.
Some of the excess of acute illness may be explained by women’s greater exposure to school children with childhood infections.
• More women than men seek care for chronic conditions and associated disability in mid- and late life. For example, for every one man, 6.5 women seek care for thyroid diseases, 4.8