MIT can address this elephant in the room: Bad periods!
Attend Sept. 14 film screening to help amplify the message
We are writing to share a “secret” about our lives as women faculty members at MIT. First, the not-so-secret part. As members of the informal “Happy Women at MIT” club, with a collective 50 years absorbing, contributing to, and reveling in the “Mens et Manus” mindset, the infusion of new students each fall reminds us that we have the best jobs in the world. Like so many of our colleagues at MIT, we grew up in working-class families, attended neighborhood high schools, and blissfully absorbed the power of math, science, and analytical thinking. We somehow ended up in top-tier graduate programs, a dream, and then as faculty at MIT, the quintessential home for nerdy (and outspoken) problem solvers.
For us, MIT has been a grand adventure. We continuously learn from brilliant colleagues and equally brilliant and creative students. We work in teams that are inspired to solve some of society’s toughest challenges, such as understanding how to alleviate poverty in Africa or building tools to aid pharma in identifying and developing new drug targets for complex diseases.
Over the years, we have watched the MIT administration, in collaboration with scores of faculty advisors, rise in pragmatic fashion to address many challenges faced by women in our community, especially around work-life balance. For example: introducing on-site day care, a term off from the tenure clock for junior faculty, and outstanding resources to help women navigate care of elderly or otherwise compromised family members.
At the same time, we have been quietly dealing with an elephant in the room — bad periods! As a “secret illness of women,” bad periods are a pervasive drain on the lives of roughly 20% of women. Yet, they’re rarely discussed in our professional environment. Several peer-reviewed studies have shown that, on top of having extra work taking care of children and elderly parents, women miss work more often than men because they themselves are sick more often than men are. An economist might ask: Does this difference contribute significantly to the “wage gap?”
Each of this article’s co-authors has juggled conferences, grant deadlines, teaching class, and other professional responsibilities while either in excruciating pain or taking brief time off for major surgery to address a gynecological disorder we have in common. We both suffer from endometriosis (more details on Linda’s experiences are published elsewhere.).
Endometriosis is a gynecological disorder where the lining of the uterus, the endometrium, is found growing outside the uterus — in the abdominal cavity. It often invades the bowel, the intestines, the bladder, and even burrows through the diaphragm to the lungs. Endometriosis afflicts about 1 in 10 women around the world, often with onset of symptoms right at the first menstrual period and lasting well past menopause. The symptoms include debilitating pain, infertility, and excessive menstrual bleeding that can lead to anemia and a host of other problems.
While some patients respond to hormonal therapies that suppress estrogen — including an increasingly popular family of drugs that cause menopause — a vast proportion do not respond to these therapies or suffer intolerable side effects. Surgery to remove lesions remains the gold standard treatment for endometriosis. Many patients have repeated surgeries for symptom recurrence. A sister disease, adenomyosis, involves invasion of the endometrial lining into the muscle of the uterus and likely afflicts about 10% of women — but we don’t really know, since it cannot be seen during surgery for endometriosis. Most physicians do not know how to screen for adenomyosis, and there is barely any research on it. And this is just one disease contributing to the sobering statistic that one in three women in the U.S. over age 60 has had a hysterectomy.
If PubMed citations are used as a proxy for research intensity, integrating all activity in academia and the private sector, the magnitude of the problem is revealed when comparing research on Crohn’s disease (afflicts about one percent of the U.S. population, approximately equally between the sexes) to research on adenomyosis (estimated to afflict two to three percent of the overall US population): 63,000 publications on Crohn’s and 3,400 on adenomyosis, as of September 2022. Not surprisingly, according to the NIH Reporter database, the NIH has only funded two grants on adenomyosis in recent decades.
This wide deficit in research intensity for adenomyosis reflects the shockingly poor funding for research on this and other gynecological disorders and, more generally, the constellation of autoimmune and chronic inflammatory diseases, ranging from chronic Lyme disease to multiple sclerosis — diseases that skew strongly female.
As revealed in background research for the Congressionally-mandated conference on “Advancing NIH Research on the Health of Women” held in 2021, only about 50% of NIH research grants targeted to women’s health go through the flexible and structurally well-supported investigator-initiated route, compared to 80% of grants overall. Others go through “Funding Opportunity Announcements” (FOAs). Whereas the investigator-initiated route has three regular submission deadlines a year, opportunity to resubmit revised grants, and benefits from standing review panels with published compositions, FOAs have only one submission date (typically soon after the FOA is announced), no opportunity to resubmit, and highly-specified requirements for the work to be conducted. The poor support for research translates into a weak clinician-scientist research community, further exacerbating treatment gaps.
Historically, innovation around the diseases specifically afflicting women has lagged behind that of other diseases. An open question is whether the recent flurry of interest and activity in “Femtech” — much of it driven by women entrepreneurs — can succeed when the research infrastructure remains weak after so many decades of underinvestment.
Together, we realized: MIT can do something about this. In fact, we believe MIT is uniquely positioned to. We can marshal talent across all the disciplines, from the basic sciences to economics, needed to bring scientific awareness, societal respect, and increased funding for common gynecological (and other) disorders that affect the lives of tens of millions of women around the world. We can do this in much the same way these talents were joined and brought to bear on breast cancer decades ago. We already have infrastructure. The MIT Center for Gynepathology Research (CGR) was launched in 2009 by Linda, in collaboration with Dr. Keith Isaacson at Newton-Wellesley Hospital, as a nexus for clinicians, scientists, engineers, and patients to engineer new directions in gynecology research. CGR research has been internationally recognized, so much so that MIT was chosen for the Boston-area screening of a new endometriosis documentary executive-produced by Hillary Clinton.
The film screening will be on Wednesday, Sept. 14. (Get tickets at https://web.cvent.com/event/0026e938-538e-4ab3-a443-27d414ab2e93/summary.) In conjunction, we are organizing a “Stand Up and Be Counted” event on Killian Court that afternoon starting at 4:45 p.m., inviting all MIT community members who care about debilitating gynecology disorders — and women’s health in general — to “Stand up and Be Counted.”
Perhaps it is time for MIT to consider a “Women’s Health Initiative” as a bold step ahead of other engineering schools in bringing practical Mens et Manus know-how to under-the-radar problems draining the energy from so many talented women. We have a community of creative and brilliant students. MIT alums have gone on to be some of the most important and impactful entrepreneurs in the world. At last count, MIT’s alumni entrepreneurs have created companies whose revenues are altogether nearly $2 trillion, which is larger than the gross domestic product of the world’s 10th largest country. To us, there is no problem that MIT students, alumni and faculty cannot solve if they put their heads together. This should be one! Join us in Killian Court on Sept. 14 to raise your voice in support!
Professor of Biological and Mechanical Engineering & Director, MIT Center for Gynepathology Research
Louis E. Seley Professor of Applied Economics, MIT Sloan School of Management