“Are you on your period?” the male doctor asked.
While cramming for her finals in 10th grade Teesta Mohan felt a sharp shooting pain near her abdomen – it was unlike anything she’d experienced before. The pain worsened to the point where she nearly passed out. When her parents rushed her to the hospital, the male doctor in the emergency room dismissed the case as period cramps aggravated by exam stress.
Mohan knew this wasn’t period pain, “It was different. I couldn't tell how, but it was different,” she says.
Her parents insisted that she get tested because of how Mohan had described the pain to them. “It turned out to be a really bad UTI,” – something that they wouldn’t have discovered if her family had listened to the doctor.
“Consider the fact that until very recently, medical research was done exclusively on white men, though the results were applied to both men and women of all ethnicities,” says Mark L. Graber, M.D., the founder and chief medical officer of the Society to Improve Diagnosis in Medicine to Prevention.
There are two primary reasons for this, “There's a knowledge gap when it comes to women's health,” says Maya Dusenbery, the author of “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.” There is simply not as much information on women's bodies and symptoms and conditions that disproportionally impact women.
The second problem is what Dusenbery calls the trust gap, this is the tendency to dismiss or normalize women’s system and often label them as psychosomatic. “In my book, I traced that problem back to this long history of hysteria as a kind of wastebasket diagnosis where any and all symptoms that doctors couldn't explain, especially if they're happening in women, would be blamed on hysteria,” she says.
Despite federal requirements to include female participants in clinical trials, significant gaps persist in critical areas such as cardiovascular disease, psychiatric disorders, and cancer. Trials related to mental health have the biggest disparity, with only 42% of participants being female despite women comprising 60% of those with psychiatric disorders according to The Washington Post.
Moreover, research funding is heavily skewed towards male-prevalent diseases, resulting in a lack of resources and attention for conditions that disproportionately affect women. Researchers often preferred male test subjects due to the lower number of hormonal fluctuations and concerns about testing on pregnant women. The National Women’s Health Network suggests that this practice has excluded women from critical studies, such as the link between hormones, calcium, and osteoporosis, as well as the misdiagnosis of heart disease symptoms in women.
Dusenbery says that for centuries, the natural cycles of menstruation, childbirth, and menopause in cisgender women's bodies were regarded as inherently pathological. This viewpoint served to reinforce the stereotype of women as being physically inferior to men and seemingly legitimized their exclusion from public life, higher education, and careers. Women's illness and perceived weakness were used as a justification for this status imposed on them. Time and time again, women were and sometimes still are considered too "sickly" to participate fully in public life.
Despite the perpetuation of the idea of differences between men's and women’s health, there was a widespread belief that apart from the reproductive system, men and women were essentially the same. This assumption was used to justify the extrapolation of research results conducted on men to women, without acknowledging the potential harm it could cause. However, this justification is in direct contradiction with the excuse given for not including women in studies due to their hormonal cycles potentially interfering with data accuracy. These two reasons are entirely inconsistent with each other, exposing the lack of attention given to the nuances of women's health and gendered experiences.
“If you are acknowledging that women are different enough that their inclusion would actually impact the study results, that's a reason to include them,” Dusenbery says.
The history of medicine is riddled with examples of how the male body has been considered the default and women have been excluded from clinical research. It wasn't until the 1990s that women began to be included in trials, with researchers previously assuming that results from studies on men could be extrapolated to women. Illnesses like fibromyalgia and chronic fatigue syndrome, which disproportionately impact women, have been historically dismissed as psychosomatic conditions and not taken seriously. This approach has resulted in a lack of understanding of conditions that predominantly affect women, such as autoimmune diseases, which have been ignored and not given priority in research agendas.
“In some cases, these diseases are really sort of marginalized and delegitimized as a kind of psychosomatic condition,” says Dusenbury.
Consequently, these conditions have not received the necessary attention and investment for research, further exacerbating the lack of understanding and symptoms and treatment options for women. For instance, the symptoms of heart disease in women differ from those in men, leading to underdiagnosis and undertreatment of this life-threatening condition. Similarly, breast cancer is often detected later in women because screening guidelines are based on studies that excluded women.
“When I was 8 years old, I started showing symptoms of an auto-immune disease,” says Nandini Thiagarajan, who requested to keep the name of her disease private. “My symptoms included various skin disorders, hormonal imbalances and a decrease in immunity.” Thiagarajan had been struggling with a range of health issues for over 12 years. Despite visiting seven dermatologists, three gynecologists, and two endocrinologists, she was unable to obtain an accurate diagnosis for her symptoms.
Throughout this period, she was also misdiagnosed with various conditions, including PCOD, depression, anxiety, and skin disorders, due to her undiagnosed autoimmune disease. However, in 2020, during the height of the COVID-19 pandemic, her last dermatologist recognized her symptoms and conducted a specific blood test to confirm the diagnosis, leading to a proper understanding of her condition and appropriate treatment.
Now, after three years of her diagnosis, she says that her quality of life has significantly improved, “I finally feel safe and secure in my own body.” she adds.
There is very little public awareness of this epidemic of misdiagnosis which leads to so many patients with autoimmune diseases suffering very long diagnostic delays. “Conditions that mostly impact women like that, that have a history of being dismissed as psychosomatic,” says Dusenbery. Most illnesses that affect women are chronic and non-fatal, with symptoms such as “pain and fatigue,” which are difficult to diagnose because they can’t be independently verified with a diagnostic test.
A potential way for doctors to circumvent this problem is to rely on the patient's own account of their symptoms, which necessitates a high level of trust in the patient. Dismissing these conditions as psychosomatic or irrelevant is more often than not what leads to inadequate treatment.
“The self-perception of symptoms may be different. Women may have a different way of reporting it, they may diminish it. It is also that when they come to a healthcare provider, we don't know as much about women,” says Dr. Sandeep Kumar, an Associate Professor of Neurology at Harvard Medical School. Kumar is also a part of the Department of Neurology, Stroke Division at Beth Israel Deaconess Medical Center.
The differences in treatment response can have serious implications for women's health outcomes, says Dr. Kumar. For instance, carotid surgery is a common treatment for preventing strokes by cleaning up blockages in the carotid artery but the majority of research on the benefits of this procedure has been conducted on men, leaving the efficacy of the treatment in women largely unexplored. Some smaller studies have indicated that women may be less likely to benefit from the procedure due to factors such as differences in healing and an elevated risk of complications.
It is time for a fundamental shift in medical research, with increased representation of women in clinical trials, better reporting of sex-specific healthcare indicators, and equal funding for male and female-prevalent diseases.
Historically, research funding has favored male-prevalent diseases, leading to neglect of female-prevalent diseases such as endometriosis, polycystic ovary syndrome, and osteoporosis. By funding research on these conditions, a better understanding of their causes can be gained and through that, effective treatments can be developed.
“You don't have any control over who is going to participate but you can put control on one side. If a certain number of people have reached, you shouldn’t include more people from that particular race or more of that particular sex,” says Gaurav Tuli, Senior Data Scientist at the Innovation & Digital Health Accelerator and Computational Epidemiology Lab in Boston Children's Hospital. Tuli along with his peers worked on research about clinical trial leadership gender disparities which revealed that female leaders tend to have a more diverse clinical trial participant group in terms of gender.
It's critical to carefully think about the marketing strategies and the specific populations being targeted. It is also equally important to ensure that individuals from diverse communities, who may not be accustomed to participating in research feel comfortable taking part. Women of color respond and are prone to a completely different set of diseases than the “norm.” Which makes it imperative to include them in research.
One way to build trust is to ensure that the research team is representative of the communities being studied. “This can help foster a sense of trust and rapport between participants and the research staff or leaders,” says Joshua Abrams, a senior attorney at the Office of General Counsel at Partners HealthCare System where he represents various healthcare entities, including Massachusetts General Hospital and Brigham and Women's Hospital, in legal proceedings and arbitrations.
There have been numerous instances in history where harmful research was conducted without clear informed consent and transparency, particularly for people of color, says Abrams. Research suggests that patients of color often experience worse outcomes, even in situations where race should not play a factor. This issue also extends to clinical care. Despite the need for race-blind care, there are still clear differences in outcomes for people of color. It then becomes crucial for both researchers and clinicians to redouble their efforts to address the root causes of these inequities.
Another potential way to address this issue of underrepresentation in medical research is to ensure that sex-specific healthcare indicators are reported accurately. This calls for systemic change at a policy level, starting with the encouragement of cities, states and countries to report data on health indicators, such as maternal and child health, maternal mortality, and STIs. With this, large gaps in health, symptoms and treatment can be identified, which, in turn, will mitigate the work that bridges them.
Prioritizing the inclusion of a diverse group of people in study designs is essential to combat this persisting data gap. Researchers have to make the conscious choice of including women of childbearing potential, of different ages, people of color, transgender people and others with non-conforming gender identities. Not only should they just be included but also be given appropriate safeguards to ensure safety.
Knowledge gained over the last few decades is being incorporated into education but it has not fully happened yet. Future doctors should be trained in the history of medicine so that they have an awareness of this gulf between the treatment offered to cisgender men and the rest of the world. They shouldn't assume that they have as much knowledge about different genders and ethnic groups as they have about their white male patients because there is a colossal blind spot where that expertise should be.
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