Women's Health Activists Note Progress But Still See Problems

SIDEBAR : Examples of Women's Health Research Goals Advocates and scientists are optimistic as they update and expand their agenda to include varied research priorities. Today's newspapers are replete with reports detailing advances in women's health: New breast cancer-causing genes are reported with increasing regularity, as are discoveries of connections between hormones or genetics and disease. In the midst of this progress, advocates for research on women's health-scientists, clinicians, physicians, patients, administrators, and federal officials-have started to reassess where the field is headed. On one hand, they view the increased number of women participating in clinical trials and the steady growth in funding for high-profile diseases such as breast cancer as accomplishments. But on the other, they agree that their efforts have only begun to touch on what there is to learn. Over the last 10 years, investigators have accumulated much knowledge. But with the new understandings, new questions have been raised, and new implications for health have been uncovered. With this in mind, the National Institutes of Health's Office of Research on Women's Health (ORWH) has started a series of regional planning meetings to update and revise its national agenda. These sessions build on an agenda-setting meeting that ORWH held in 1991 in Hunt Valley, Md. The first of the recent regional planning meetings took place in September in Philadelphia. At that meeting, biomedical researchers, as well as representatives of scientific, professional, and women's health organizations from around the United States, met to identify informational gaps and make recommendations for redefining the field. BUDGET UPTREND: ORWH director Vivian Pinn is heartened by the increase in funding for her office. "I was excited to see that there was a recognition by meeting attendees that we have made progress," says ORWH's director, Vivian W. Pinn. She was also heartened by the overwhelming desire of participants to commit to a multidisciplinary approach to the study of women's health. "We've been focusing on genetic issues, biotechnology, and more basic science breakthroughs," she notes. "Now, the excitement in the community seems to be related to focusing on prevention and the behavioral aspects of disease." The early 1990s marked a boom time for women's health research, which got a boost from the creation of ORWH. Residing in the office of the NIH director, ORWH was established in 1990 to stimulate research, monitor policy, and enhance scientific career development. Former NIH director Bernadine Healy's direct interest in this area gave the field much momentum and visibility. (F. Hoke, The Scientist, April 19, 1993, page 1). Despite changes in leadership at NIH, which is now headed by Harold Varmus, ORWH has maintained its momentum. "Dr. Varmus has a different style than Dr. Healy," remarks Pinn, "but he has certainly been supportive and has defended our office in hearings before Congress." In fact, she adds, "our funding level has increased over the last two years." Between 1994 and 1996, ORWH's budget has grown from about $11.1 million to $17.2 million. 'KNOWLEDGE GAP': Penn's Jeane Ann Grisso cautions that much work lies ahead. Visible progress aside, Pinn and many others are quick to point out that their work has only just begun. As one of the meeting co-organizers, Jeane Ann Grisso, an associate professor of medicine and director of the FOCUS Program on Women's Health at the University of Pennsylvania School of Medicine, puts it: "We've just scratched the surface. There's a huge knowledge gap in what is known about women." For many years, for example, few women were included in clinical studies of heart disease. But now, evidence is accumulating that estrogen, produced during a woman's reproductive years, can protect against coronary artery disease and heart attacks. Recent studies have shown that falling estrogen levels associated with menopause cause a loss of this defense. Women's health advocacy groups say there are more advances to be made. Joanne Howes, a partner in Bass and Howes Inc., a women's health policy analysis firm in Washington, D.C., cites the enormous increase in funding for breast cancer research and prevention efforts as a "dramatic example of the advances in women's health." Federal funding in this area has almost doubled over the last five years, from more than $227.2 million in 1993 to an estimated $399.7 million for FY 1997. However, adds Howes, "the rest of the women's health world has not been successful at that dramatic level." THE NEXT STEP: Activist Frances Visco says advocates now must "tackle the tough stuff" like securing funds. Frances Visco, president of the National Breast Cancer Coalition, a Washington, D.C.-based activist group, contends that the women's health movement has accomplished the easy things like raising awareness of women's health concerns. "Now we need to tackle the tough stuff," including getting "a real commitment for more funding," she asserts. She also says researchers need to get more involved in policy-making and working with patient groups. 'VICTORY': Columbia's Nancy Wexler sees progress in the fact that a federal office has "women's" in its name. Another positive development noted by observers is that women's health issues have become more mainstream. "Just the fact that there's an office with the name 'women's' in it is a huge change," maintains Nancy Wexler, the Higgins Professor of Neuropsychology in Columbia University's College of Physicians and Surgeons. "That's an enormous psychological victory, but we still have a long way to go. I still think there's a lot of latent prejudice in the culture that needs to be overcome." According to people in the field, research and advocacy related to women's health cover four broad areas: gender differences in diseases of all humans; female-specific diseases, such as those involving reproductive organs; health-services delivery, which includes patient-physician communication and preventive and clinical services; and career issues, such as recruiting women into biomedicine. "A mistake was made historically that has since influenced issues on women's health," maintains Grisso. She points to the official definition of what constituted a women's health issue as adopted by the Public Health Service Task Force on Women's Health in 1983. It included diseases or conditions that affect women disproportionately, affect subgroups of women for which risk factors were different, or are unique in women. Over the last several years Grisso has called for expanding that early definition. "Looking at conditions that affect women disproportionately basically diverted us away from the major causes of morbidity and mortality in women, which are the same as they are in men," she says. Using intertwined definitions of male, female, and overall human health issues and research, however, also makes it difficult to tease out progress in different areas of women's health research in terms of dollars. "For those who want to look at just dollars, that's difficult to do," notes ORWH's Pinn. "The ultimate test for evaluating progress in women's health is to ask: 'How many studies are we now funding that are beginning to address issues that were not previously addressed?'" MORE INVOLVEMENT: NIH's Ruth Kirschstein cites a need to encourage the inclusion of women in clinical trials. "From 1985, research on women's health has come an enormous distance," asserts Ruth Kirschstein, NIH deputy director and ORWH's first acting director. The efforts of the task force on women's health were basically aimed at raising people's consciousness, she recalls. But from the mid-1980s to the early 1990s, "we did not succeed in the one thing we hoped to achieve-to really encourage [more] inclusion of women in clinical trials." Before this push, very few clinical studies-such as those investigating heart disease and blood cholesterol level-included women for a variety of reasons. The most notable were cost; a lower rate of disease in women in the age group studied; and a purported difficulty in data analysis due to women's menstrual cycles and changing hormonal levels. In a 1993 article in the Journal of the American Medical Women's Association (J.H. LaRosa, V.W. Pinn, 48:145-51, 1993), Pinn and Judith H. LaRosa, former ORWH deputy director and now a professor of public health at Tulane University, state that the extent to which women have not been included has not been well documented. Some noteworthy exceptions do exist, they write, pointing to the Framingham Heart Study, an ongoing observational study of the development of heart disease over a person's lifetime. The study has tracked men and women in the town of Framingham, Mass., since 1948, and has provided much baseline data for the cardiovascular health of both sexes. Women comprised 51 percent of the study population at the outset and today At the 1991 Hunt Valley meeting, one year after ORWH was established, an agenda was established for the future of women's health research. The report, Opportunities for Research on Women's Health (Public Health Service, NIH Publication No. 92-3457, September 1992), summarizes discussions at the three-day conference. "One of the major goals that came from the Hunt Valley meeting was to include [more] women in clinical trials," recalls Kirschstein. "That has been true now for the last several years. When women's health people sit down to do research now, they really do think in terms of gender, age, and minority differences." Recruitment and Retention of Women in Clinical Studies (Public Health Service, NIH Publication No. 95-3756, 1992), a report on an ORWH-sponsored workshop, sums up the progress thus far. Participants in working groups at the September planning meeting sponsored by the National Institutes of Health Office of Research on Women's Health brainstormed about the state of their fields, describing gaps in knowledge and making recommendations for future research directions. The groups concluded that more data are needed in several key areas in order to enable researchers and health care providers to accomplish the following goals. Cardiovascular Disease/Vascular Biology evaluate chest pain in women determine atherosclerotic processes in men and women define lipid profiles and their manipulation in women ascertain differential vascular effects of estrogens Neuroscience And Behavior determine gender-specific brain functions allow for interdisciplinary study of health and pathology, for example chronic pain study genetic regulation of neural function in men and women prove the influence of hormones on brain development and plasticity Immunology, Growth, And Development demonstrate the effects of gender on basic immune systems ascertain how life changes influence the immune response examine the relationship between mucosal immunity and hormones find gender-related modulators of response such as nutrition, stress, pollution, and infectious disease Infectious Diseases And Emerging Infections examine the vaginal ecosystem under normal and altered conditions define the natural history of the human papilloma virus illustrate the effect of HIV serotypes on transmission and disease develop therapies for sexually transmitted diseases (STDs) and HIV during pregnancy Mental And Addictive Disorders further explore mind-body-spirit interactions investigate socioeconomic status-race-ethnicity-gender interactions integrate mental health care into primary care and community settings Reproductive Health determine the effects of external factors such as lifestyle, pharmacology, and environmental and occupational exposures on the health of pregnant women research contraceptive-STD interactions ascertain how socio-cultural-behavioral factors affect one another investigate the etiology, pathophysiology, and amelioration of infertility characterize the etiology, epidemiology, risk factors, efficacy, and long-term effects of ectopic gestation explore the pathophysiology of endometriosis and myomia Cancer assess ethnic, socioeconomic, and gender differences in biology determine the impact of behavioral and lifestyle factors improve appropriate screening and barriers develop curative treatments for malignancy For example, the Cardiovascular Health Study is looking at the risk factors for coronary heart disease and stroke in women and men over 65. The study is being conducted in California, Maryland, North Carolina, and Pennsylvania and will run until 1999. A total of 2,942 women were recruited into the study-only 58 shy of the 3,000 goal. "There's been a total sea change in terms of awareness," says Wexler. "People can't get away with what they used to get away with in terms of clinical trial participants." She says that the 1993 NIH Revitalization Act, which mandates that NIH-funded studies include women and minorities as subjects in clinical research, has made a huge difference. She cites a recent NIH-funded study on analgesic kappa-opioids, a class of painkillers chemically related to morphine (R.W. Gear et al., Nature Medicine, 2:1248-50, 1996). Researchers from the University of California, San Francisco, and Kaiser Foundation Hospital in Hayward, Calif., found that the drug-when administered to a group of women who had just had their wisdom teeth extracted-provided longer and better pain relief than it did for men who had undergone the same procedure. The authors of the study speculate that these findings could spur researchers to take a second look at drugs cast aside by clinicians and companies because they didn't work in trials in which women were not tested. However, Wexler adds, the inclusion of women in trials is still not de rigueur for the entire research community. "If you're funded by industry, there are ways you can continue studying men only. So I think there's just a lot of catching up that needs to be done on women, studies that already have been done on men." Despite progress in the field of women's health, these researchers and health advocates also acknowledge that it is time for reflection. Participants in topic-specific working groups at the September ORWH meeting in Philadelphia echoed the sentiments of the women's health community at large. Meeting co-organizer Bonita Falkner, a professor of medicine and pediatrics and acting director of the Institute for Women's Health at the Allegheny University of the Health Sciences in Philadelphia, says the groups recognized that a "considerable amount of work has already been done," but much still remains. "One of the good things that this meeting addressed," says Grisso, "is how we need to take a more systematic approach to the study of women's health, not an ad hoc, categorical, disease-based one." But she warns that this will require fundamental changes in how academic medical centers are run, as well as how scientists pose questions. 'NOT JUST EPIDEMIOLOGY': Interest in community-based women's health research pleases CDC's Wanda Jones. Wanda Jones, associate director for women's health at the Centers for Disease Control and Prevention in Atlanta, found other aspects of the meeting fulfilling. "I come from a different perspective from NIH, [so] I was particularly gratified to see the increased interest in community-based research." She defines this area as "not just epidemiology," but also areas such as assessing community levels of health and getting communities involved in devising research study protocols. Participants prioritized the issues raised at the meeting differently. Some say studying gender differences is of primary importance, while others contend that concentrating on female physiology is paramount. No matter how the women's health communi-ty ranks the issues, many think that the entire effort needs to be conducted more holistically. HOLISTIC OUTLOOK: The social and mental aspects of women's health must be addressed, contends pediatrician Helen Rodriguez-Trias. Pediatrician Helen Rodriguez-Trias, codirector of the Pacific Institute for Women's Health/Western Consortium for Women in Los Angeles, cautions that the current framework under which research is carried out-one that she says speaks more to the physical aspects of health than the social and mental aspects-does not address health broadly enough. A written statement submitted by Sheryl Burt Ruzek, a professor of health education and women's studies at Temple University, for the September meeting also called for a new outlook. She wrote that "prerequisites to women's health are ignored in a narrow biomedical paradigm." Instead, she recommended that research priorities "reflect the vision of health that the World Health Organization [WHO] promotes." WHO's encompassing view of health is a "state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." Rodriguez-Trias says all health research must be placed into a societal and emotional context. "No matter what we do about health care, you can't be healthy if there's violence in your home and in your community," she asserts. For example, she says, abused women live in a constant state of fear, and this environment affects physical as well as mental well-being. The psychological and social dimensions of health-as they affect all health research, not just that focusing on women-is an area that needs to receive much more attention in the near future, she concludes.

Women's Health Activists Note Progress But Still See Problems

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