Women's Health: The Making of a Powerful N e w Public Issue Marie Bass Joanne Howes Bass and Howes Washington, DC
Abstract This article is a discussion of the coming of age of women's health as a major public policy and political issue for the 1990s.
f there is such a thing as a "feel-good issue" for these times, it is w o m e n ' s health a n d the positive signs that n e w public attention a n d political interest are resulting in real c h a n g e for w o m e n . Like m a n y of o u r colleagues in the w o m e n ' s m o v e m e n t , we focused our efforts in the 1970s a n d 1980s on organizing a n d a d v o c a t i n g equal rights, p a y equity, r e p r o d u c t i v e f r e e d o m , a n d the election of w o m e n to public office. Health w a s not an issue on o u r political or legislative agenda. In 1988, Dr. Florence Haseltine of the C e n t e r for Population Research at the National Institutes of H e a l t h (NIH) s u g g e s t e d that w e examine the state of w o m e n ' s health research in the United States. She u r g e d us to convince w o m e n to p a y attention to their o w n interests at the N I H a n d e l s e w h e r e in the world of medical research. We w e r e interested, but w e h a d little k n o w l e d g e of the subject area. We b e g a n to h a v e informal talks with a w i d e r a n g e of w o m e n leaders, a n d t h r o u g h out 1989, m e t with m e m b e r s of C o n g r e s s a n d their staff; with key staff at the N I H , the National Institute of Mental Health, a n d other federal agencies; a n d with i n f o r m e d p e r s o n s f r o m the fields of medicine, health, science, a n d law. W h a t w e learned w a s e y e - o p e n i n g a n d s o m e t i m e s truly shocking. Facts that are c o m m o n k n o w l e d g e t o d a y w e r e notable a n d n e w s w o r t h y 2 years ago. For example:
I
• Women have historically been excluded from large-scale clinical trials, such as the famous aspirin study; even when women were included, study results were not routinely analyzed for gender differences. • No gynecologic unit existed within the entire structure of the NIH nor was there any central coordinating office for women's health matters. • Few women have achieved the top echelons of medicine and scientific research. For example, there are no female deans of medical schools, and there is a dearth of female senior researchers in every field including obstetrics and gynecology. W h e n w e m e t with leaders of the national w o m e n ' s organizations, w e f o u n d not just interest b u t a g u n g - h o let's-do-it attitude. M o r e t h a n one
WHI Vol. 2, No. 1 Spring 1992
© 1992 by The Jacobs Institute of Women's Health 1049-3867/92/$5.00
BASS AND HOWES: COMMENTARY 3
officer of a leading national group told us that, in fact, her grass roots membership was demanding that health be added as a program area and a focus for lobbying and advocacy for the organization. These discussions and our year-long fact-finding mission confirmed the need for immediate attention to the inadequate funding of women's health research, to the absence of women in study populations, and to the lack of attention to and analysis of differences among women of color, older women, and women with specific medical conditions. In February 1990, the Society for the Advancement of Women's Health Research was established to bring public attention to these issues and to build the support necessary to achieve significant, lasting change. A distinguished board of directors brought together leaders in women's health from the fields of medicine and science, public policy, and government. Important early endorsement and support came from the American College of Obstetricians and Gynecologists, the American Psychiatric Association, and the American Nurses Association. Other medical groups, a few small pharmaceutical firms, and several individuals contributed to the early budget. A critical ally on Capitol Hill was (and remains) the Congressional Caucus for Women's Issues. Early in 1990, cochairs Patricia Schroeder (D-CO) and Olympia Snowe (R-ME) joined with Henry Waxman (D-CA) in requesting an audit by the General Accounting Office (GAO) of NIH procedures with respect to women and clinical research. When Congressman Waxman held hearings in June 1990 before his subcommittee on health and the environment, the GAO reported that the NIH had made little progress in implementing its internal policy to encourage the inclusion of women in research study populations or in analyzing study results by gender. The reverberations from this hearing were thunderous---on Capitol Hill, at NIH, and in the news media. Within a short time, then-acting NIH director William Raub announced the creation of the Office of Research on Women's Health at NIH and appointed Dr. Ruth Kirschstein, director of the Institute of General Medical Sciences, as temporary director. A meeting was held with congressional leaders to establish goals and to set a timetable for measuring progress. An NIHwide directive declared that women and minorities must be included in all clinical study populations or an up-front justification for their absence must be made. On Capitol Hill, the Women's Health Equity Act was introduced with broad bipartisan support. Its components include not just research but access to health care and treatment. The Older Women's League has taken the lead in forming the Campaign for Women's Health to build support for this legislation. The efforts of many other groups have amplified and intensified the overall interest in women's health. One significant development was the creation of The Jacobs Institute of Women's Health and the publication of this journal devoted exclusively to women's health issues. In 1991, we saw progress on several fronts. Dr. Bernadine Healy became director of the NIH, the first woman ever to hold the post. A cardiologist, Dr. Healy wrote about gender bias in her own field of medicine in an editorial in the New England Journal of Medicine entitled "The Yentl Syndrome." Women simply have not been given the same attention as men when they demonstrate symptoms of coronary heart disease, according to two recent studies, even though heart disease is the leading killer of women. And, of course, this inattention partly results from the sparseness of data on women and heart disease. "Indeed," Dr. Healy wrote, "it is now time for a general awakening. Women have unique medical problems . . . . We must awaken fully to these 4
BASS AND HOWES: COMMENTARY
WHI Vol. 2, No. 1 Spring 1992
facts and address the diseases of women as different from the diseases of men but of equal importance . . . . " There is new energy and determination on Capitol Hill for increased funding for breast cancer research, for the Office of Research on Women's Health, now headed by Dr. Vivian Pinn, and for a host of other important women's health issues. The NIH has announced it will undertake a historic multi-institute, multidisciplinary study, the Women's Health Initiative. We are witnessing an unprecedented joining of science, medicine, research, industry, and advocacy. In April 1991, the Society for the Advancement of Women's Health Research convened 25 representatives from a full spectrum of medical specialities and invited them to name and discuss the areas most in need of expanded research. The proceedings were published, and the Society took the recommendations to roundtables of women health care providers and consumers across the country. Participants in these roundtables were asked to evaluate the report according to their own lives and needs. These women from diverse backgrounds sounded a remarkably uniform theme--a women's health research agenda, they urged, must acknowledge the diversity of women and focus not just on disease intervention but on prevention of disease, freedom from violence, access to health care, and overall wellness. Armed with insights gathered at these roundtable discussions as well as the original recommendations of the medical specialists, the Society cosponsored a conference in December with the Center for Research on Women and Gender of the University of Illinois at Chicago, entitled "Women's Health Research: Opportunities and Strategies for Change". This conference has laid the groundwork for the Society's plan of action in 1992 and beyond--to see that appropriate research efforts are undertaken and that women's health needs are given the necessary priority by public and private research. Today, America's attention is riveted to problems of skyrocketing costs of health care and health insurance. A direct link can be drawn between high costs, poor health, and the suffering of women and the neglect of women's health research needs by the medical/scientific establishment. The aging female population is the largest block of regular voters in this nation--and the population carrying the brunt of this neglect. Therefore, it is easy to see w h y promoting women's health can be a popular and winning agenda for politicians. Through the efforts of the Society for the Advancement of Women's Health Research and other organizations, a strong and powerful coalition of scientists, doctors, health care professionals, and public officials are joining forces to bring about important and long-overdue change that will improve the lives of women and their families.
WHI Vol. 2, No. 1 Spring 1992
BASS AND HOWES: COMMENTARY 5
Abstract This article is a discussion of the coming of age of women's health as a major public policy and political issue for the 1990s.
f there is such a thing as a "feel-good issue" for these times, it is w o m e n ' s health a n d the positive signs that n e w public attention a n d political interest are resulting in real c h a n g e for w o m e n . Like m a n y of o u r colleagues in the w o m e n ' s m o v e m e n t , we focused our efforts in the 1970s a n d 1980s on organizing a n d a d v o c a t i n g equal rights, p a y equity, r e p r o d u c t i v e f r e e d o m , a n d the election of w o m e n to public office. Health w a s not an issue on o u r political or legislative agenda. In 1988, Dr. Florence Haseltine of the C e n t e r for Population Research at the National Institutes of H e a l t h (NIH) s u g g e s t e d that w e examine the state of w o m e n ' s health research in the United States. She u r g e d us to convince w o m e n to p a y attention to their o w n interests at the N I H a n d e l s e w h e r e in the world of medical research. We w e r e interested, but w e h a d little k n o w l e d g e of the subject area. We b e g a n to h a v e informal talks with a w i d e r a n g e of w o m e n leaders, a n d t h r o u g h out 1989, m e t with m e m b e r s of C o n g r e s s a n d their staff; with key staff at the N I H , the National Institute of Mental Health, a n d other federal agencies; a n d with i n f o r m e d p e r s o n s f r o m the fields of medicine, health, science, a n d law. W h a t w e learned w a s e y e - o p e n i n g a n d s o m e t i m e s truly shocking. Facts that are c o m m o n k n o w l e d g e t o d a y w e r e notable a n d n e w s w o r t h y 2 years ago. For example:
I
• Women have historically been excluded from large-scale clinical trials, such as the famous aspirin study; even when women were included, study results were not routinely analyzed for gender differences. • No gynecologic unit existed within the entire structure of the NIH nor was there any central coordinating office for women's health matters. • Few women have achieved the top echelons of medicine and scientific research. For example, there are no female deans of medical schools, and there is a dearth of female senior researchers in every field including obstetrics and gynecology. W h e n w e m e t with leaders of the national w o m e n ' s organizations, w e f o u n d not just interest b u t a g u n g - h o let's-do-it attitude. M o r e t h a n one
WHI Vol. 2, No. 1 Spring 1992
© 1992 by The Jacobs Institute of Women's Health 1049-3867/92/$5.00
BASS AND HOWES: COMMENTARY 3
officer of a leading national group told us that, in fact, her grass roots membership was demanding that health be added as a program area and a focus for lobbying and advocacy for the organization. These discussions and our year-long fact-finding mission confirmed the need for immediate attention to the inadequate funding of women's health research, to the absence of women in study populations, and to the lack of attention to and analysis of differences among women of color, older women, and women with specific medical conditions. In February 1990, the Society for the Advancement of Women's Health Research was established to bring public attention to these issues and to build the support necessary to achieve significant, lasting change. A distinguished board of directors brought together leaders in women's health from the fields of medicine and science, public policy, and government. Important early endorsement and support came from the American College of Obstetricians and Gynecologists, the American Psychiatric Association, and the American Nurses Association. Other medical groups, a few small pharmaceutical firms, and several individuals contributed to the early budget. A critical ally on Capitol Hill was (and remains) the Congressional Caucus for Women's Issues. Early in 1990, cochairs Patricia Schroeder (D-CO) and Olympia Snowe (R-ME) joined with Henry Waxman (D-CA) in requesting an audit by the General Accounting Office (GAO) of NIH procedures with respect to women and clinical research. When Congressman Waxman held hearings in June 1990 before his subcommittee on health and the environment, the GAO reported that the NIH had made little progress in implementing its internal policy to encourage the inclusion of women in research study populations or in analyzing study results by gender. The reverberations from this hearing were thunderous---on Capitol Hill, at NIH, and in the news media. Within a short time, then-acting NIH director William Raub announced the creation of the Office of Research on Women's Health at NIH and appointed Dr. Ruth Kirschstein, director of the Institute of General Medical Sciences, as temporary director. A meeting was held with congressional leaders to establish goals and to set a timetable for measuring progress. An NIHwide directive declared that women and minorities must be included in all clinical study populations or an up-front justification for their absence must be made. On Capitol Hill, the Women's Health Equity Act was introduced with broad bipartisan support. Its components include not just research but access to health care and treatment. The Older Women's League has taken the lead in forming the Campaign for Women's Health to build support for this legislation. The efforts of many other groups have amplified and intensified the overall interest in women's health. One significant development was the creation of The Jacobs Institute of Women's Health and the publication of this journal devoted exclusively to women's health issues. In 1991, we saw progress on several fronts. Dr. Bernadine Healy became director of the NIH, the first woman ever to hold the post. A cardiologist, Dr. Healy wrote about gender bias in her own field of medicine in an editorial in the New England Journal of Medicine entitled "The Yentl Syndrome." Women simply have not been given the same attention as men when they demonstrate symptoms of coronary heart disease, according to two recent studies, even though heart disease is the leading killer of women. And, of course, this inattention partly results from the sparseness of data on women and heart disease. "Indeed," Dr. Healy wrote, "it is now time for a general awakening. Women have unique medical problems . . . . We must awaken fully to these 4
BASS AND HOWES: COMMENTARY
WHI Vol. 2, No. 1 Spring 1992
facts and address the diseases of women as different from the diseases of men but of equal importance . . . . " There is new energy and determination on Capitol Hill for increased funding for breast cancer research, for the Office of Research on Women's Health, now headed by Dr. Vivian Pinn, and for a host of other important women's health issues. The NIH has announced it will undertake a historic multi-institute, multidisciplinary study, the Women's Health Initiative. We are witnessing an unprecedented joining of science, medicine, research, industry, and advocacy. In April 1991, the Society for the Advancement of Women's Health Research convened 25 representatives from a full spectrum of medical specialities and invited them to name and discuss the areas most in need of expanded research. The proceedings were published, and the Society took the recommendations to roundtables of women health care providers and consumers across the country. Participants in these roundtables were asked to evaluate the report according to their own lives and needs. These women from diverse backgrounds sounded a remarkably uniform theme--a women's health research agenda, they urged, must acknowledge the diversity of women and focus not just on disease intervention but on prevention of disease, freedom from violence, access to health care, and overall wellness. Armed with insights gathered at these roundtable discussions as well as the original recommendations of the medical specialists, the Society cosponsored a conference in December with the Center for Research on Women and Gender of the University of Illinois at Chicago, entitled "Women's Health Research: Opportunities and Strategies for Change". This conference has laid the groundwork for the Society's plan of action in 1992 and beyond--to see that appropriate research efforts are undertaken and that women's health needs are given the necessary priority by public and private research. Today, America's attention is riveted to problems of skyrocketing costs of health care and health insurance. A direct link can be drawn between high costs, poor health, and the suffering of women and the neglect of women's health research needs by the medical/scientific establishment. The aging female population is the largest block of regular voters in this nation--and the population carrying the brunt of this neglect. Therefore, it is easy to see w h y promoting women's health can be a popular and winning agenda for politicians. Through the efforts of the Society for the Advancement of Women's Health Research and other organizations, a strong and powerful coalition of scientists, doctors, health care professionals, and public officials are joining forces to bring about important and long-overdue change that will improve the lives of women and their families.
WHI Vol. 2, No. 1 Spring 1992
BASS AND HOWES: COMMENTARY 5
