Working On a Cure for Unequal Medicine : Personal health: Women’s medical issues are moving up on the nation’s agenda. The shift resulted in part from the changing needs of aging baby boomers.
During a U. S. Senate hearing on menopause last year, one senator summed up the event’s significance: “I don’t think that word has ever been uttered on the floor of the Senate.”
To women’s health care leaders, the hearing was but one landmark in an extraordinary two-year surge in addressing gender inequality.
The “revolution” began June 18, 1990, when the General Accounting Office reported that medical research was mainly being done on males, largely to the benefit of males only.
The resulting cascade of criticism, advocacy, hearings, conferences and government appointments has led to major changes in the way women’s health issues are regarded by both medical professionals and consumers.
Women’s health advocates say more money is going into women’s concerns and more women are being enrolled in clinical trials, entering medical school and being appointed to senior positions of private and public health institutions.
Moreover, in the last two years:
* A woman--Dr. Bernadine Healy--was named director of the powerful National Institutes of Health.
* The NIH created its own Office for Research on Women’s Health.
* The Society for the Advancement of Women’s Health Research (SAWHR) was founded to give women’s health issues greater political visibility.
* The Journal of Women’s Health, the first interdisciplinary peer-reviewed medical journal devoted to women’s health, was published this spring.
“This is nothing short of a revolution,” says Andrea Camp, an aide to Rep. Patricia Schroeder (D-Colo.), a longtime women’s health advocate.
“I’ve never seen things happen so quickly for women,” says Joanne M. Howes, a founder of SAWHR, a nonprofit advocacy group established in 1990. “I think what happened is this issue really hit a raw nerve.”
What it all means, says Howes, is that the nation has finally undertaken a full-fledged effort to address the treatment and prevention of conditions and diseases that affect primarily women, instead of viewing women’s health as an afterthought or of secondary importance to men’s health. Women’s health care amounts to two-thirds of the nation’s annual medical bill.
“Women may already be getting better health care than they did three years ago,” says Howes.
The time is right for women to press their health-care needs, says Cindy Pearson, program director of the National Women’s Health Network, a Washington-based advocacy group. As female baby boomers age, they are taking an interest in health matters beyond contraception and pregnancy, she says:
“Our society has been organized to respond to the baby boom generation. But until now those women were not facing major health problems. They were trying to get pregnant or not get pregnant. But now the oldest baby boomer is in her late 40s. She is approaching menopause and the years when cancer and heart disease are the leading killers of women. In many areas--such as cancer and heart disease--we don’t know as much about women as we know about men.”
Women are increasingly distraught over the lack of knowledge about the major killers of women, such as breast cancer, says Howes:
“There are so many women with so many sad, unfortunate stories to tell (about inadequate health care). I think the injustices were so obvious once they were pointed out. This issue of gender inequality was just ready to be set off.”
Women were particularly incensed by the exclusion of women from major national studies on aspirin use to prevent heart attack and on aging factors. Moreover, analysis of funding spent for cancer research showed comparatively little being spent on cancers that are of more concern to women, such as breast and ovarian cancer. And, while hormone replacement therapy has been standard treatment for menopausal women for more than two decades, large-scale clinical trials to assess the long-term risks and benefits of hormone therapy began only recently.
Women are demanding that doctors address the knowledge gaps, Howes says: “They now believe they have the right to have this information.”
In some instances, women have joined forces to demand more attention. The influential Breast Cancer Coalition, for example, is made up of 160 national and local advocacy groups. But behind this coalition are many ordinary women, Howes says:
“Many of them are women who have had breast cancer and have organized to get more money on research for breast cancer. A lot of women who were not political have become political.”
Most physicians and scientists view the attention to women’s health issues as long overdue, women’s health experts say.
The American Medical Assn., for example, conducted its own study of gender inequality in clinical care and found that, in many instances, male and female patients with the same condition are treated differently, Pearson notes.
“There is this kind of acknowledgment,” she says, “but there is quite a bit of disagreement among the medical profession about what to do about it.”
Many health professionals are responding voluntarily, says Dr. Vivian Pinn, director of the women’s health research office at NIH.
“They recognize that there is not just an office here shaking a rule stick at them and saying ‘You must do this,’ ” she says. “Instead of seeing something that just is mandated, the scientists are recognizing there is a need for it.”
Many women’s health groups have publicly thanked a large network of obstetricians and gynecologists for supporting their efforts.
“The ob-gyns have been out there helping us,” says Schroeder. “They have been very willing to come on board and say, ‘We don’t have the information we need.’ ”
Among the proposals to improve women’s health care is a new medical specialty to address women’s health.
“There is certainly a movement that says we need a woman’s health specialty . . . someone who could give women complete medical care instead of being split in half at the waist,” Pearson says.
A conference on specialization on women’s health will be held this fall at the Center for Research on Women and Gender at the University of Illinois at Chicago.
“There are two aspects to specialization,” says Sarah Hemphill, a research specialist at the center. “The biomedical aspect is one. Women’s bodies just operate differently. But it goes beyond hormones.”
Women also face different circumstances that can affect their health, such as where they live and who they live with, she says.
“There is also just a lot difference in the way their lives are lived,” Hemphill says. “Things like domestic violence should be included in women’s health; things like eating disorders,” which are more prevalent in women. Hemphill says she believes the development of a women’s health specialty is “imminent; probably within 10 years.”
The need to focus on the wide range of women’s health issues in part led to the Journal of Women’s Health.
Publisher Mary Ann Liebert says her interest in gender equality in health care began in the early 1980s when her husband, a Harvard Medical School graduate, was invited to participate in the Harvard Aspirin Study while she, also a Harvard Medical School grad, was not.
“I remarked to my husband that the study should include women if only because we have some biologic difference. And, in fact, that is exactly why we were excluded,” she says.
Several hundred science and medical journals are available to physicians that include women’s health articles. But Liebert says: “A journal like this recognizes the importance of the field and spurs more articles by doctors for doctors.”
The journal will emphasize how women’s lives and lifestyles affect their health. For example, the first issue contained articles on smoking and stress, wife abuse, osteoporosis, interstitial cystitis (a type of bladder infection) and HIV in women.
Still, advocates say, the government will have the greatest opportunity to promote women’s health issues. They point to positive steps such as Healy’s appointment and the selection of Dr. Antonia Novello as U.S. surgeon general.
Moreover, the Congressional Women’s Caucus has made health a top priority.
“There’s no question that the leadership in Congress remains a very important piece of this,” Howes says. “If the congressional interest lessens, then the pressure on NIH is less.”
Pinn says Healy’s presence at NIH, which funds almost half of the nation’s medical research, sends a strong message: “It was like putting helium in the balloon.”
But some women’s advocates say the progress in gender equality in health care is still on shaky ground.
“I remember testifying with Betty Ford about breast cancer,” Schroeder says. “It’s not like this has happened overnight. It’s been like Chinese water torture. It appears for the first time we’re denting the rock. I must say it’s about time. Now the whole thing is to keep the issue from getting minimized.”
What’s Ahead for Women’s Health
* Release of the National Agenda for Women’s Health Research from NIH advising the scientific community and others on the top priorities in women’s health research. Summer, 1992.
* Release of government report assessing how the Food and Drug Administration tests new drugs on women. September, 1992.
* First release of data showing whether scientists are following NIH guidelines to include women in relevant clinical research trials. Fall, 1992.
* The Women’s Health Initiative, the largest study ever on health issues of interest to women (including osteoporosis, menopause and heart disease), will begin awarding grants to scientists followed by recruitment of 65,000 women participants for the study. Fall, 1992, and spring, 1993.
