Equal Opportunity Research
The medical community has turned its focus to women's health, uncovering critical information about gender-specific disease
By Claire M. Martin
Only when Nancy Loving suffered a heart attack at age 48 did she discover that heart disease does not discriminate between men and women, but the medical research community does. Loving, the 55-year-old director of WomenHeart, a Washington, D.C.-based nonprofit advocacy organization that provides heart-disease information and support to women, now knows that coronary heart disease is the leading cause of death in women. More than 8 million American women are affected, and 500,000 die from heart disease each year. She also believes that a lack of inclusion of women in heart-related research studies is failing these women—to an often fatal extent. Until fairly recently, the same could be said for women's health across the board.
We now know colon cancer is the second-most fatal type of cancer among women. Less than a decade ago, medical science both routinely ignored women and actively barred them from medical studies of general-health problems, citing complications related to pregnancy and menstruation. "Scientists were using men because it was easier," explains Sherry Marts, scientific director of the Society for Women's Health Research, another Washington, D.C.-based national nonprofit organization that has advocated the improvement of women's health through research since its establishment in 1990. "[The research scientists] assumed that whatever they found in men should hold true for women, and the symptoms that showed up primarily in women were considered atypical."
The reproductive health movement of the 1970s and 1980s brought increased attention to women's health, but it was also ultimately responsible for widespread neglect in the treatment of disease in women. In 1977, after the realization that diethylstilbestrol (DES) and thalidomide had devastating effects on the fetuses of the pregnant women who used them, the Food and Drug Administration (FDA) banned premenopausal women from all early-stage drug trials. For the next 16 years, women of childbearing age were included in FDA trials only on a limited basis. "Women were excluded from some of the studies of HIV and AIDS drugs merely because they were of childbearing potential," says Susan Wood, PhD, director of the Office of Women's Health at the FDA, established in 1994.
By the early 1990s, a critical mass of women doctors and scientists had assembled, and they began agitating for change. Of specific note were results from the Brigham and Women's Hospital-based Physicians' Health Study, which has tracked the health of more than 22,000 male physicians since 1982. "Women in research started scratching their heads and asking, 'Well, what about women?'" says Marts. By the mid-1990s, they succeeded in convincing the federal government to establish special women's health departments at governmental agencies such as the FDA, National Institutes of Health (NIH), and Centers for Disease Control (CDC), finally putting women's overall health, not just reproductive health, under the microscope.
Short Learning Curve
In the brief intervening time, these women's agencies have been busy collecting and disseminating data, as well as sponsoring research. Among the new areas of focus is colon cancer, which we now know is the second-most fatal type of cancer among women (after lung cancer). As with heart disease, it's long been misperceived as primarily striking men.
Studies have also shown that women have a longer list of stroke risk factors, including pregnancy, high blood pressure, cigarette smoking, and high alcohol consumption. Moreover, after age 65, according to researchers at the Columbia University College of Physicians and Surgeons, women may be at a greater risk for stroke than men of the same age.
Women make up only 25 percent of participants in heart-related research. We've also learned that heart disease is the cause of death in more than five times as many women as breast cancer; plus more women than men will die from it. And research has disclosed that women are more likely to get Alzheimer's and autoimmune diseases, but they're less likely to come down with Parkinson's, though we don't yet know why. Researchers of addiction have found that women have a tougher time quitting smoking, and infectious-disease researchers at the National Center for HIV, STD, and TB Prevention found that by the age of 30, half of sexually active women will have had chlamydia.
When it comes to health, young women aren't in the clear either: Last March, the CDC reported that the number of sudden heart attacks in female adolescents and young women increased by more than 31 percent from 1989 to 1996. Experts speculate that obesity, cigarette smoking, and lack of physical activity may be some of the causes.
But despite the fact that inclusion of women in drug trials is now mandatory, the FDA remains in the planning phase as far as analyzing its research data by gender. Hence, it regularly approves prescription drugs that put women at an increased risk of developing potentially fatal irregular heartbeats. Last year, the agency publicly admitted the problem and revoked its approval on ten drugs, including the antihistamines Seldane and Hismanal, because of it. However, ten other drugs with similar effects—amiodarone, bepridil, disopyramide, erythromycin, halofantrine, ibutilide, pentamidine, pimozide, quinidine, and sotalol—remain on the market.
The Mother Of All Studies
The biggest coup thus far for women's health research is the Women's Health Initiative (WHI), an ongoing 12-year study by the National Heart, Lung, and Blood Institute. Focusing on the prevention of heart disease, cancer, and osteoporosis in women, WHI is the largest women's health study ever conducted, with a record 161,000 female subjects (all of them postmenopausal). Results from the WHI, which began in 1993 and officially ends in spring 2005, will be made public in late 2005 or early 2006.
Women's Health Resources
To access more information and to keep track of ongoing studies and results, check in with these helpful organizations:
For general women's health information:
National Women's Health Resource Center
For research news:
Society for Women's Health Research
For drug news:
FDA's Office of Women's Health
For heart disease news:
For updates on the Women's Health Initiative:
NIH's National Heart, Lung, and Blood Institute
www.nhlbi.nih.gov/whi "In terms of the rigor of the science and the size of the study, it's a landmark," says Jacques Rossouw, MD, acting director of WHI. For the first time, women will have real evidence and definitive answers to health questions that have always seemed nebulous: Does dietary fat affect cancer? Do calcium and vitamin D prevent fractures? Does hormone replacement therapy (HRT) prevent heart disease or affect breast cancer? This latter question has, of course, been resoundingly answered as a direct result of the WHI study. In early July, it was announced that the studies revealed HRT actually increases the risk of breast cancer, as well as increasing the risk of heart disease, stroke, and pulmonary embolism. (Because of the alarming results, WHI pulled the plug on the HRT trial, stating that the risks of this therapy clearly outweighed the benefits.)
WHI will also address Alzheimer's disease, nutrition, and the influence of education on health. "What's so exciting is the commitment of the women in the study," says Marts. "One truism is that people don't volunteer if they're not asked—but no one has ever asked this age group of women to be in a study of this size."
There's still a long way to go, says Loving. "Women make up only 25 percent of participants in heart-related research today," she says. "In 1990, we were at 20 percent, so at this rate, it's going to take another 50 years to get parity with men."
Women often don't get appropriate treatment, according to Loving, because they experience different heart attack symptoms—nausea, dizziness, and back pain or pressure—versus the classic male "Hollywood heart attack," complete with crushing chest pain and a tingling left arm. Women, primary care doctors, and ER doctors tend to be appallingly misinformed when it comes to women's heart disease, she says, and often misinterpret symptoms as being gastrointestinal, hormonal, or psychiatric in nature.
Nonetheless, she concedes, awareness is on the upswing. After all, not only have several women's magazines recently taken on this issue, but Oprah aired an entire show on women and heart disease last February. With follow-through from major ongoing studies such as WHI and an upcoming education campaign spearheaded by the NIH, we may just be at the onset of a mini-boom not only in consciousness, but also in action.