Why Women's Health is Still on The Back Burner and How The U.S Government Can Fix It

A team from Harvard Medical examined 1,433 trials with 302,664 participants and found the percentage of women included in clinical trials and compared it the the percentage of women being affected by the diseases whose clinical trials neglected to include them [1].

Written by Kennedy Kostecki, Edited by Gabrielle Cohen
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The National Institutes of Health (NIH) is the primary federal agency responsible for conducting biomedical research in the U.S. and is one of the world's foremost research centers [2]. As the backbone of the medical industry, the NIH provides physicians with the research needed to solve the health problems we face. However, up until the 1990s, the NIH only worked to solve men’s health problems. In 1993, Congress finally passed the NIH Revitalization Act which required that the NIH include women and minorities in all research studies [3]. Despite the Act’s passage, the NIH did not fully comply for years. Additionally, before 1993, women and minorities were not included in the majority of studies, yet the data from those studies is still actively used today. The mistakes of the past were not solved by the Act – research gaps still exist today. Women’s health is standing on a half-built bridge to equality, thwarting them from crossing the finish line.

Why Gaps in Research Still Exist Today 
    If Congress has ensured that women must be included in research, why do research gaps persist? Once Congress passed the law for women to be accounted for in research, the industry remedied the situation by simply adding women to existing experimental protocols, but never modified experimental design, lecture, or procedure to fit women. Since experiments and lectures were only fine-tuned to the anatomy and physiology of the male body, researchers may have noted variations in females, but could not apply these findings to explaining possible ramifications. The NIH General Accounting Office found that most clinical trials funded by the NIH “were designed to include women, but not in numbers high enough to allow analysis that would definitively measure different outcomes for men and women” [4]. A former employee of the NIH added on to this, saying that researchers included women, but the NIH has neglected to require researchers to examine if women and men fare differently in these clinical experiments. This subpar approach to “solving” the issue was akin to putting a band-aid on a bullet hole and has allowed medical inequality to persist. The biomedical industry has continued on without looking back and addressing the significant gaps in data they left vacant. If the backbone of physicians' diagnoses and treatment is based on medical research that does not account for women, how do we expect physicians to take women into account? 

How Lacking Research Leads to Inefficient Diagnoses 
    From dermatology to urology, inadequate research has caused many women to receive delayed diagnoses, misdiagnoses, incorrect treatments, or even no help at all. Regardless of the specific result, many women have died as a result. Some of  the largest discrepancies in treatment between men and women have been found in cardiovascular disease.
 According to Nish Jhalani at Columbia University’s Health System, heart disease is the number one killer of women. This is largely because today’s guidelines to treat heart disease are based on studies from before the 1990s that only included men. Even today, only 30% of test subjects are women [5]. 
This lack of research and misrepresentation is especially concerning as women present symptoms differently than men, and women themselves often aren't aware of them. Men, for example, present for heart attacks like we see in movies, with sharp chest pain, a numb left arm, and the inability to move or talk. Women, however, are much more likely to have an “atypical” presentation, with symptoms like shortness of breath, nausea, and fatigue [6]. Because of the lack of effort put into women’s health research, not only do doctors lack proper guidelines for preventing heart disease, but women themselves are also unaware of their symptoms, which can lead them to ignore dangerous symptoms. Even if they recognize their symptoms, doctors often categorize women's heart disease as anxiety or gastrointestinal problems due to using male diagnosis guidelines [7]. Cardiovascular disorders are a top killer for both men and women, but due to these discrepancies women lose their lives at a much higher rate than men struggling with the same conditions. 
There are also discrepancies among neurological disorders like ADHD. Research shows ADHD prevalence rates are higher among boys due to a low index of clinical suspicion for girls; their presentation is considered “subthreshold” as women present as predominantly inattentive rather than having observable symptoms like hyperactivity or impulsivity. This threshold is learned and referred to by physicians from the Diagnostic and Statistical Manual of Mental Disorders [8]. The manual defines criteria for ADHD as inattentiveness, impulsivity, hyperactivity, and 23 other criteria that are applied equally to both men and women. Women, however, internalize symptoms and display them differently from men whose presentation usually aligns with the manual’s definition of ADHD symptoms. Due to this discrepancy, physicians note fewer ADHD symptoms in women. Although women's symptoms impair their lives as much as men’s, they often do not receive the treatment they need. These one-sided definitions lead to many women suffering from neurological disorders for much longer periods–or even their entire lives–due to a lack of diagnosis.   

A Solution
The NIH Revitalization Act did not completely address the longstanding neglect of women’s health and failed to propose solutions to correct the male-centered data collected before its passage. Before 1993, some of the world's landmark clinical studies were completed without a single woman involved. Physicians still refer to these incomplete studies today. The Baltimore Longitudinal Study of Aging heavily explored the basic function of “normal aging” and didn’t include women for the first twenty years it ran [9]. The Physicians' Health Study which made the landmark conclusion that taking a daily aspirin may reduce the risk of heart disease included 22,071 men and zero women. Likewise, the Multiple Risk Factor Intervention Trial which looked at how dietary change and exercise could prevent heart disease included 13,000 men and no women. Defaulting to men reached even larger extremes as the study on how changing estrogen levels can affect rates of heart disease enrolled 8,341 men and no women [10]. Despite the study not including a single woman, physicians accordingly prescribed estrogen pills to a third of postmenopausal women. The Revitalization Act did not require this data to be updated, leaving us with an incomplete understanding of the foundational aspects of human physiology, such as aging and diet. We still lack complete data today, and women continue to suffer as a result.
The NIH Revitalization Act must be updated for women's health to have any shot at achieving equality. The original Act failed to sufficiently integrate women into biomedical research and failed to address the gaps in research conducted prior to 1993. A new initiative must be put in place to solve what the 1993 Act could not. One possible solution is the creation of a task force of researchers focused solely on women's health research and filling in the data gaps that have overlooked women. For no good reason, women continue to suffer and die at vastly disproportionate rates compared to men. Research gaps from the past, present, and future must be filled, and ‘lazy science’ must end. With President Biden's recent induction of a new NIH president after a two-year vacancy [10], there is an opportunity for movement towards the improvement of the NIH, and women’s health must be a top priority. 

Bibliography
[1] Vadali, Manisha. "More Data Needed." Harvard Medical School News. Last modified June 29, 2022. https://hms.harvard.edu/news/more-data-needed.
[2] Usa.gov. "National Institutes of Health (NIH)." Usa.gov. https://www.usa.gov/agencies/national-institutes-of-health.
[3] Pear, Robert. "Research Neglects Women, Studies Find." The New York Times, April 30, 2000. https://www.nytimes.com/2000/04/30/us/research-neglects-women-studies-find.html.
[4] Ibid.
[5] Jhalani, Nisha. "Heart Disease in Women is Not Like Heart Disease in Men." Columbia Doctors. Last modified February 28, 2022. https://www.columbiadoctors.org/news/heart-disease-women-not-heart-disease-men.
[6] Ibid.
[7] Ibid.
[8] Quinn, Patricia O., and Manisha Madhoo. "A Review of Attention-Deficit/Hyperactivity Disorder in Women and Girls." The Primary Care Companion for CNS Disorders, May 15, 2014. https://doi.org/10.4088/pcc.13r01596.
[9] Dusenbery, Maya. Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. New York, NY: HarperOne, an imprint of HarperCollinsPublishers, 2018.
[10] Ibid.
[11] Weixel, Nathaniel. "Senate votes to confirm new NIH leader." The Hill. Last modified November 7, 2023. https://thehill.com/policy/healthcare/4297437-senate-votes-to-confirm-new-nih-leader/.