The Art and Science of Medicine
Volume XXVI Number 1
Rose Fife, left, and Tina Darling confer about the National Center of Excellence in Women's Health in Fife's office.
Photo © 2003 Tyagan Miller
Claudia Lazdins, a bilingual outreach coordinator for the IU National Center of Excellence in Women's Health, talks about HIV/AIDS with a female hospital patient.
Photo courtesy National Center of Excellence in Women's Health
The Fight for Women's Health
Consider this scenario: a middle-aged Caucasian woman wakes up one morning and, while performing a self-examination, discovers a lump in her breast. The mass is small but well defined and clearly requires the attention of a qualified health-care provider. The woman calls her primary care physician immediately and is given an appointment time later the same day. A supportive colleague at the college where she teaches agrees to cover her afternoon class. As frightening as the experience is, the woman trusts her doctor and feels com-forted that diagnosis and treatment will begin without delay.
Now consider another scenario: a middle-aged Hispanic woman wakes up one morning and inadvertently discovers a lump in her breast. She rarely sees a doctor and has no knowledge of breast self-examination. She has never received a mammogram. The lump worries her, but her English skills are limited; she's not sure if she could describe the problem over the phone to an English-speaking health-care provider. There are no women's health clinics in her neighborhood, and she is too embarrassed to discuss her condition with the male physician who sometimes treats her children. She knows that a lump can signal a serious medical condition, but she tries to put her worries aside--she can't afford to take time off from her hourly job to pursue treatment. At least not this week, and probably not next week either.
As these two scenarios suggest, formidable obstacles still remain on the path to comprehensive, high-quality health-care for all, regardless of sex, age, race, or socioeconomic status. Perhaps the most conspicuous crisis in women's health care today lies in the "disparities in access, diagnosis, and treatment that women experience when they are ill," explains Rose S. Fife, professor of medicine and director of the National Center of Excellence in Women's Health at the Indiana University School of Medicine (IU CoE).
How can the medical community reach all women--particularly underserved populations such as minorities and the rural poor--educate them, understand their specific cultural concerns, and provide them with the best health care possible? How can the gaps between the haves and have-nots be closed?
Fife and her staff and collaborators are answering these questions in dozens of ways through their outreach and clinical projects at IU's CoE. The center is one of 13 in the country established in the late 1990s by the Department of Health and Human Services' Office on Women's Health. Each of the centers is charged with the task of improving women's health care in its community, while serving as a national model in the pursuit of comprehensive, up-to-date, and user-friendly clinical care for women. The federal government placed a special emphasis on diversity by mandating that all 13 centers direct special efforts toward those women who, for reasons of age, race, ethnicity, socioeconomic status, or sexual orientation, are likely to be at risk for less than optimal care.
Fife acknowledges that progress is slow, but she says women's health care is improving in this country. "One example is that women are more likely now to be accurately diagnosed with cardiac problems," she explains, an improvement over the recent past, when heart disease was considered primarily a male concern. And although she emphasizes that the numbers are still inadequate, she is encouraged by an increase in the number of women participating in clinical trials, which often provide lifesaving access to cutting-edge medicines and treatment.
But the women's health-care agenda is still enormous. Disparities in women's health-care outcomes are strongly affected by factors like socioeconomic status and ethnicity, as well as age, sexual orientation and rural or urban living conditions. Like the Hispanic woman who puts off a trip to the doctor after discovering a lump in her breast, many underserved women may not receive a diagnosis in time to benefit from any form of treatment, much less participate in a potentially lifesaving clinical trial. Fife explains that the center has identified African-American and Hispanic women as underserved, high-risk populations in Indiana, but it also targets rural women in isolated regions of the state.
Fife and her colleagues must listen carefully to community health-care educators and providers, particularly those working on the front lines with underserved populations, to set basic priorities and establish programs. "From listening, it's clear that we need to be focusing on domestic violence, weight management, smoking cessation, and HIV/AIDS," she says.
Reaching African-American, Hispanic, and rural groups requires sensitivity to at least three distinct sets of cultural concerns--attitudes about disease and treatment, body image, and language and literacy issues. For example, to encourage Hispanic women to participate in preventive breast cancer behaviors, the center wrote a grant to develop a Spanish-language video on breast cancer screening and prevention. The grant included funds to support a Spanish-speaking outreach coordinator, who worked closely with the center's research coordinator, Distinguished Professor Victoria Champion, to develop a screening and prevention education program. Amazingly, this simple program consisting of a Spanish-language video and one outreach coordinator increased the number of Hispanic women receiving mammograms at Indianapolis's
Wishard Hospital by more than 30 percent in one year.
HIV/AIDS research is another crucial focus for the IU CoE. The disease is prevalent among African-American women and growing more so among Hispanic women. Funds from the National Institutes of Health AIDS Clinical Trials Group recently helped the center begin developing methods to recruit Hispanic women into HIV/AIDS clinical trials. Fife emphasizes that the participation of women--particularly underserved women--in clinical trials would greatly advance the general goal of improving all women's health.
The center now supports a part-time, Spanish-speaking outreach coordinator who educates minority communities about the advantages of participating in clinical trials. "African-Americans and Hispanic-Americans have a historic and justifiable reluctance to participate in trials because of past abuses," Fife explains. "African-Americans in particular have a lingering fear of being experimented upon. But we need to educate, to let these groups know that there are critical, lifesaving advantages to clinical trials that they should not miss out on."
Fife and her staff understood from the beginning that improving women's health in Indiana would be a cooperative affair. Collaborations with existing community and state health agencies and organizations, as well as with other IU schools, including Nursing, Dentistry, and the IUPUI School of Science, have enabled the center to offer an impressive array of educational and clinical resources for women. Fife is quick to acknowledge the contributions of the center's project coordinator, Tina Darling, who works with the center's partners to come up with creative ways to reach deeply into underserved communities.
A number of the center's outreach, clinical, and research programs focus on two of Indiana's top women's health concerns: obesity and smoking. In recent years, Indiana has ranked second in the nation in the prevalence of smoking among women and first in obesity. "People don't necessarily realize that these two problems are interrelated," Fife explains. "Women often use smoking as a means to control weight."
She is pleased with a highly popular weight management program sponsored by the CoE's Women's Health Clinic at Wishard Hospital. The Center for Comprehensive Weight Management offers dietary counseling, exercise, group support sessions, and other types of weight management support to the public and serves large numbers of African-American women. The program was created by Ann Zerr, an associate professor of clinical medicine and the center's clinical director, who received support for the project from several sources including the Indiana State Department of Health. "This program owes much of its success to Dr. Zerr's charisma and personal involvement with the patients," Fife observes.
In partnership with Wishard Hospital, the center also runs several cancer support groups. The groups are unusually successful in attracting large numbers of African-American women who, traditionally, do not participate in disease support groups. Support groups are important for underserved women, as they are for all people dealing with serious illness, Fife says, because they reduce isolation, help people learn coping strategies, and encourage them to ask questions and participate more actively in their treatment.
"These support groups are monumental," she says. "We started with breast cancer, and we quickly knew that we needed to do support groups for other types of cancer as well. There are very few support groups in the country like ours that involve underserved women in particular. This is a model we could apply to all sorts of diseases, if we had the funding to do it."
Even with so much outreach and so many collaborations already established, the IU CoE is working to expand its impact. "Because we are primarily centered in Indianapolis, there are a lot of women we're not reaching," Fife admits. She and her staff are working with the Purdue Cooperative Extension to find more ways to connect with women across the entire state. "They already have a network in all 92 counties to deliver information to women," she says, "and they've asked us to explore closer ties. Access to their network would give us the ability to reach far more women."
Yet another component of the center's mission is fostering women's health research and supporting the careers of women in academic medicine. In the CoE mission statement, the HHS Office on Women's Health strongly encourages each center to "develop a research agenda linking basic science with clinical care, and to foster the development of careers of women in academic health centers."
In response to that charge, Fife created the Pilot Project Program, a grant project designed to encourage younger researchers to pursue interests related to women's health issues (see sidebar). Relatively small grants of $12,000 are awarded to researchers for the purpose of establishing preliminary data, which researchers use to illustrate a project's potential to a larger funding agency. All IUPUI faculty are eligible to apply, but priority is given to junior faculty. Researchers in many areas--behavioral, clinical, and laboratory-based, as well as epidemiologists--are eligible, if their proposals address health-care issues important to women.
"When research money is tight, it really helps to have enough support to get a project off the ground," says Fife. Since the program's inception in 1999, the center has awarded seven Pilot Project grants, and Fife is working to secure funding for at least two more grants to be awarded in 2004.
Fife also expresses a deep commitment to the task of improving recruitment and retention of women faculty and students within the IU School of Medicine. The center sponsors a Student-Faculty Mentor Program, in which a significant number of female medical students are mentored by female faculty. It also contributes to and supports the activities of the IU Student American Medical Women's Association, which sponsors special programs for women medical students. While Fife is especially proud of the Pilot Project Program, she is similarly pleased about recent funding successes that support two important positions for women faculty at the School of Medicine: the Barbara F. Kampen Chair in Women's Health and the Doris H. Merritt Lectureship in Women's Health.
"We really want to continue our work in this area," Fife says. "Ultimately, we would love to attract some researchers who want to do health-service research--that would fit beautifully with the center's objectives. Obviously, the Pilot Project Program is very important. We would also like to find a way to bring more women researchers to the faculty, perhaps to endow a research chair. There are marvelous people here already with whom that person could collaborate, but we need funding to attract someone."
While the center's programs target many different women's health problems, what they have in common is ingenious simplicity. With reasonable effort, many could be replicated in other communities. In the center's compilation of workable good ideas, the beginnings of a national model for comprehensive women's health care are evident. But change comes slowly, and funding, even for good ideas, is a perpetual challenge.
"I am not, by nature, an optimist," Fife says, with a laugh. "But I think there are enough people out there who understand the importance of what we do."
Optimist or not, the long list of projects sponsored by the IU Center of Excellence suggests an optimist's belief in the idea that good things can be done. With many urgent priorities and a limited budget, Fife focuses on the continuous quest for funding, which she manages with assistance from the Medical School's development office. Persuading individuals, even foundations, to give money to the general cause of women's health is not always easy. "People tend to give money spontaneously to fight specific diseases that have touched their lives, or they give in honor of a physician they admire who practices in a certain field of medicine. Because we don't focus on just one disease, it's hard to get that kind of targeted money."
But Fife isn't giving up. "With desperation comes more creativity and more ideas," she says.
Deborah Galyan is novelist and freelance writer in Bloomington, Ind.