When the playwright, author, and activist Eve Ensler described how her new book “burned through me,” she was aptly setting the stage for the Radcliffe Institute’s April conference, “Who Decides? Gender, Medicine, and the Public’s Health.” Ensler’s In the Body of the World: A Memoir of Cancer and Connection is a searing portrayal of her battle against advanced ovarian cancer and her global V-Day campaign targeting violence against girls and women.
That creative bridging of the personal and the political was sustained the next day, as a distinguished roster of physicians, policymakers, journalists, and academics from around the world revealed how often-misguided assumptions about gender shape medical diagnoses, research priorities, and access to treatment. As Lizabeth Cohen, dean of the Institute, put it, “Health is rarely about health alone.”
Indeed, medicine’s shifting categories of illness and well-being more often reflect “the way that the social world comes smack into the body,” as Arthur Kleinman AM ’74 put it. He’s a psychiatrist and medical anthropologist at Harvard Medical School and the Esther and Sidney Rabb Professor of Anthropology at Harvard.
Ever since Hippocrates theorized about the “wandering womb”—the notion that a displaced uterus ﬂoats around the body, provoking a host of ills (a list that would eventually include hysteria)—women have been disproportionately labeled with what we now call depression, anxiety, and post-traumatic stress disorder. Such diagnostic trends represent “a medicalization of women’s misery,” said Jane M. Ussher, professor of women’s health psychology in the Centre for Health Research at the University of Western Sydney School of Medicine. As an antidote, Ussher offered myriad nonmedical causes of female distress: Women are more likely than men to be poor, to have arduous caregiving roles, to be victims of physical or sexual abuse, and to be socialized to ruminate about their problems and internalize psychic pain.
The strange history of a drug named Sarafem exemplifies the gendered slant of psychiatric diagnoses, said Nate Greenslit, a lecturer in the Department of the History of Science at Harvard University. Sarafem is chemically identical to the blockbuster antidepressant Prozac. After Prozac went off patent, the drug was rebranded in 2002 by Eli Lilly and Company as a remedy for “premenstrual dysphoric disorder” (PMDD)—deﬁned as a severe form of premenstrual syndrome. It was no coincidence that Sarafem hit the shelves just as direct-to-consumer pharmaceutical marketing took off. TV commercials for the drug featured hapless women angrily crashing grocery carts and querulously searching for car keys. “Think about the week before your period. Do you feel irritability, tension, tiredness? Think it’s PMS? Think again. It could be PMDD.”
Biggest Disease on the Cultural Map
“Think again” was the unstated theme of a conference that challenged conventional wisdom at every turn. The journalist Peggy Orenstein, author of the provocative April 2013 cover story in the New York Times Magazine, “Our Feel-Good War on Breast Cancer,” linked her medical travails to a larger scientific and cultural tug-of-war. Orenstein was ﬁrst diagnosed with breast cancer in 1997; the disease returned in 2012. Between those two diagnoses, the breast cancer awareness movement soared.
“Breast cancer has become the biggest disease on the cultural map,” she said. Orenstein found that virtually every public place on her daily route—“the supermarket, the dry cleaner, the gym, the gas pump, the mall, the florist”—was decorated with posters proclaiming early detection the best protection. Today, according to the federal Centers for Disease Control and Prevention (CDC), more than two-thirds of US women age 40 and older have had a mammogram within the past two years—a medical trend that ts the cultural imperative of personal empowerment.
But the concomitant rise in breast cancer diagnoses has not translated into saved lives. That’s because mammograms are far better at detecting slow-growing or never-to-be-deadly cancers than at finding lethal tumors at a treatable stage. When a federally appointed task force recommended in 2009 that women start screening at age 50 (instead of 40) and get mammograms every two years (instead of annually), many breast cancer advocacy groups were furious. Even the Obama administration distanced itself from the recommendations, assuring women and doctors that government insurance programs would continue to cover routine annual mammograms for women starting at age 40.
Orenstein warned that such willful blindness to the data won’t serve women’s health. “We’re not going to screen our way out of breast cancer,” she said. Rather, scientists need a better understanding of what triggers these metastases. “I think women can handle the truth. I think we can live with complexity.”
Matters of the Heart
Another inconvenient truth is that heart disease kills 10 times as many US women as breast cancer does—yet 10 times as much research money is spent on breast cancer as on women’s heart disease.
Why the illogical disparity in funding? Because policy-makers, and even doctors, are looking through gender filters. Medicine traditionally considered heart disease a male affliction. Moreover, the clinical signs of heart attack in women are different from those in men—in women, the waxy plaque in coronary arteries erodes; in men, it explodes—yet many emergency room screening protocols target the classic male-pattern signs and symptoms.
In 1984, women became the majority of heart disease victims in the United States. But not until 1996 did the National Institutes of Health and the CDC acknowledge the reversed demographics and retool their policies. “I daresay had it been an infectious disease epidemic, it would have been recognized much more quickly,” said C. Noel Bairey Merz MD ’81, director of the Women’s Heart Center and the Preventive and Rehabilitative Cardiac Center at Cedars-Sinai Medical Center. “I’m quite sure if it had anything to do with the prostate, it would have been recognized very quickly.” Women remain vastly underrepresented in clinical trials on heart disease.
Nothing About Us Without Us
On the bright side, the past 50 years have seen dramatic progress in women’s health, including Medicare and Medicaid; Title IX, the federal civil rights law that strengthened women’s athletic programs (not only improving women’s health but also delaying sexual activity and pregnancy); campaigns against domestic violence; and increased funding for research on women’s health.
But Paula A. Johnson ’80, MD ’84, MPH ’85, a professor of medicine at Harvard Medical School and executive director of the Mary Horrigan Connors Center for Women’s Health and Gender Biology at Brigham and Women’s Hospital, reminded the audience that gender gaps persist. One in three women has experienced intimate partner violence; half the pregnancies in the United States are unintended; and women make up the majority of unpaid caregivers, putting their own health at risk.
The 2010 Affordable Care Act (ACA) has begun to address these inequities. As US Representative Louise M. Slaughter (D-NY) recounted (in a gleefully sardonic “Can you believe it?” tone): Before the ACA, eight states and the District of Columbia allowed insurance companies to consider domestic violence a preexisting condition, and single women who shopped in the private insurance market could be charged more than men for the same policy.
Thankfully, those days are gone. One of the achievements of the ACA is that it treats women not as special cases but as patients with complex health needs across the life cycle. Ruth J. Katz, director of the Health, Medicine and Society Program at the Aspen Institute, consulted closely on the drafting of the bill in her role as chief public health counsel with the US House of Representatives Committee on Energy and Commerce. Before an audience in which veteran health activists were well represented, she proudly recited an organizing slogan that guided her as the ACA was being negotiated: “Nothing about us without us.”
Throughout the day, the energy and excitement in the Knafel Center was palpable. Conversations struck up by new acquaintances spilled over into the lunch hour and the late-afternoon reception. In a sense, the group heeded Eve Ensler’s exhortation from the night before: “Our biggest journey is to come back to our bodies—as human beings.”
The journalist and author Madeline Drexler is editor of Harvard Public Health magazine. Her most recent book is A Splendid Isolation: Lessons on Happiness from the Kingdom of Bhutan.
Photographs by Tony Rinaldo