Why does a symptom affecting 19% of men get five times more funding than a symptom affecting 90% of women? The truth is, research on women’s health has never reached true equality. In the 70s, most women of “childbearing potential” were banned from participating in clinical trials. Since its reversal a decade later, representation in trials hasn’t reached equality.
Health research uncovers information and discoveries that could prove useful to patients, the community and other researchers. Both research and general care should parallel the concerns of the population, as distinct needs arise.
In the cases where gender bias rears its head, health care can be negatively impacted, as biological sex plays a role in physiological, metabolic, hormonal and cellular differences — all of which influence how diseases present and the effectiveness of pharmaceuticals and medical devices. Since approximately half the world’s population is female, the noticeable lack in the depth in understanding women’s healthcare is concerning.
Picture this: you’re studying for midterms, but the headache you’ve been sporting all day causes you to want the aspirin you keep in your bag. You pull out the orange container and look at the side of the bottle to see the standard dosage. The drug dosage on the label is — and should be — found by testing on the entire population in order to determine the most accurate dosage.
In reality, drug testing leans toward the male instead of female population, meaning lab tests on the drug aren’t replicated evenly among sexes. When it comes to aspirin, this small difference may not be a pressing issue, however, in many other cases, an inaccurate dose could cause harm.
When drug dosages are tested, they take into account the body weight of the participants, an abundance of which are males. Many times, women are disproportionately impacted and accidentally overmedicate on prescribed medication due to lower body weight on average, undergoing unnecessary and avoidable side effects.
Women have been historically excluded from clinical trials on the basis of “feminine specific issues,” such as hormone fluctuations. The thalidomide tragedy, an anthropogenic medical disaster which caused severe impairments to children after the mother took a medication, caused the FDA to enforce a policy in 1977 that was interpreted broadly; due to the perceived risk of exposing pregnant women to unsafe drugs, this policy excluded nearly all premenopausal women from participating in clinical trials, including those who were on birth control, had sterile partners or abstained from sex. This wasn’t outlawed until a decade later.
Although some researchers have legitimate reasons for excluding women from studies, the underrepresentation still has long-term negative impacts on women, which is why the resurgence in effort to include women in modern times gives some semblance of hope.
The Women’s Health Movement began during the second wave of feminism in the 20th century. During the 60s and 70s, women’s activists began fighting against the abortion ban. These women wanted to gain back control of their own reproductive rights, which culminated in the well-known Roe v.Wade case. The WHM was a grassroots advocacy movement that swiftly became an umbrella for all women’s health issues due to its popularity.
The National Institute of Health also helped to revamp women’s health research. They created the Revitalization Act of 1993, which required the inclusion of women and minorities in NIH-funded clinical research. Today, around half the participants in NIH clinical trials are women. The more recent 21st century Cures Act required a revision of NIH policy on inclusion of children of clinical research where relevant.
Reanna Clavon is a clinical research coordinator of the Trial of Exercise and Lifestyle for Ovarian Cancer Survivors, a national cancer institute-sponsored study for newly diagnosed ovarian cancer survivors at the University of Miami and Yale University. This study explores the effects of a medical nutrition and exercise therapy program during chemotherapy in order to improve chemotherapy adherence and quality of life.
Clavon explained that TEAL was a clinical trial with a control and intervention group that is accruing a total of 200 women, 100 at UM and 100 at Yale. The goal is to enroll these women while they’re in treatment for ovarian cancer, which can not be recurrent, and who are receiving their first round of chemotherapy. This population has a very limited amount of research, she explains, for ovarian cancer as a whole, and less so when it comes to how this population can be supported during treatment.
Ovarian cancer is a cancer primarily affecting middle-aged and older women that begins in the ovaries, which often goes undetected until the late stages when it has spread within the pelvis and belly.
“The majority of our participants have been lovely — mostly all strong women fighting for their lives and what they have around them,” said Clavon.
At its late stage, ovarian cancer is more difficult to treat and may be fatal. However, its earlier stages often have no symptoms. In later stages, the symptoms are general and non-specific: bloating, loss of appetite and weight loss.
Clavon said “the different disparities that were found” were a big part of the challenges she faced while pursuing her research.
Clavon applied and worked part-time as a grant coordinator at a federally organized health center, overseeing underserved and low-income populations. There, she directly worked for programs with women and children.
“It’s hard to receive funding in this space the way that curative and medication intended research often times has,”said Clavon. “In the past decade, the research field over prevention science had, such as the lifestyle factors looked at in the TEAL study, much less traction due to a lack of funding. But now we’re looking at it at a perspective of ‘let’s prevent the problem that is happening.’
Clavon mentioned that even today, when people think of a doctor, they envision a man, and when they think of a nurse, they envision of a woman. Among the people she’s spoken to, they will default to “doctor man.” This bias makes it hard for recognition in this field due to the domination of men in many science-related spaces. However, certain fields are shifting and the science community is creeping towards a more balanced and self-aware place.
Clavon explained how gender bias can influence effective treatments and disease prevention strategies amongst women.
“It goes back to funding. You cannot prove that something helps until you have proven that something helps. Which is why pilot studies exist, on a small scale to later help on a big scale,” said Clavon.
“Different factors — access to getting recognized, seen as a worthwhile person, time, strength, and energy to do so, and funding to have those opportunities in the first place” can impact women, and any people who appear feminine, according to Clavon.
In order to properly care for half of the population, the medical field needs to properly examine this demographic of people. Women and women of color, both of whom were historically underrepresented in clinical trials, undergo many issues due to the lack of research. Now, we are more alert to the acute need of including these minorities and bridging that research gap.
words_nicole vedder. design_lizzie kristal.
This article was published in Distraction’s Fall 2024 print issue.
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