What happens with women’s health research now?
The shittiest game of Chutes & Ladders
“In the not too distant past, men were considered representative of the human species; differences from the male norm were viewed as atypical or abnormal, just one aspect of a broader sexism that ranks among the most pervasive human prejudices.” – Zucker, Prendergast, and Beery (2022)
When I started wrapping up my PhD and considering what corner of science I wanted to specialize in, I found myself drawn towards reproductive biology. Specifically curious about the world of stress and female fertility. To narrow in on opportunities and places to apply, I started asking around: “which labs study the biological links between female fertility and stress?” If anything, I thought this field might already be crowded given the general acceptance of fertility advice centered around stress reduction (i.e. not getting pregnant? It must be stress!)
But the answer I got far too often – “no one studies that”.
Really?!
Really.
It is not that stress and female fertility are not linked (they are1) or that this question is not interesting to pursue. The apparent “disinterest” was more likely a reflection of how few researchers actually studied female animals at the time (including humans). It’s a bit tricky to study female fertility when your model system revolves around males.
“Women and nonhuman female mammals have been given short shrift in biomedical research. Until recently, the research community labored under the misguided assumption that information garnered from studies of males could be generalized without modification to females.” – Zucker, Prendergast, and Beery (2022)
The culture of science has always fueled research biased towards the male body. Scientists are competitive, funding is tight, and tenure-track positions are hard to come by – studying a cycling animal (a female animal with cycling reproductive hormones rather than static controlled hormone levels) adds a few extra steps and the potential for variability which has always been assumed to slow the pace of discovery and publication2. This leaves a majority of basic science skewed by the decades of research based on hormone-static, young male animal models.
In 2016, this skew started towards a promising shift. That year, a mandate from the National Institutes of Health required that all funding applicants propose research to either factor in sex as a biological variable or justify single-sex study design (referenced as the “SABV policy”).
Sure, most of the shift related to how studies started including both male and female subjects, but it was a start. As explained to me by a neuroscience researcher who has dedicated her research career to sex differences and stress:
“I do think we know a lot more about females and the female brain because of the SABV policy. Is it perfect? No. Is it comprehensive? No. Is it having us focus on differences, which may not always be helpful? Yes. Shouldn't we care about [other aspects of this like] stressed parents? Yes. But I am surprised how far the field has gone in such a short time.”
Research had just started to reorient and adjust and fill in the gaps and ask the right questions. Researchers had just started to accept that females are not just males with pesky ovaries, and women are not “small men”. As of that conversation (only a month ago), there was some hope that we would eventually start inching our way towards truly understanding sex differences and female physiology at a basic science level. The light at the end of the tunnel seemed far, but we could see it.
In the last few weeks, that light just dimmed.
With new mandates affecting the NIH grant review process, reviewers now have to look out for flagged words. Included on that list – “female” and “women”. The impact of these mandates on progress of the SABV policy remains to be seen, but it is not a stretch to expect an enormous backslide.
As of writing this, the NIH websites that contained information about the SABV policy now show the phrase “Historic document published prior to January 20, 2025”.
As told to The Transmitter:
“I just felt my heart sink when I saw that—I don’t understand why you would want to change a policy that clearly has had a positive impact on the integrity and reproducibility of basic science studies. [Abandoning the policy would] put us back in the dark ages in terms of our science,” – Anne Murphy, professor of neuroscience at Georgia State Institute, and a voice on the subcommittee that helped construct the SABV policy
Where are we backsliding from?
If this were a game of Chutes & Ladders, we just hit the very first chute. We never actually made it that far up the board to begin with.
While there was some promise, women’s health research always lagged far behind where it needed to be, fueled by those issues plaguing basic research discussed above.
Human health research never fared much better than basic science – Federal law did not require women to be included in clinical trials until 1993. NIH did not even have designated funding categories for “pregnancy” or “maternal health” until 2017. Menopause was not a funding category until 2023. Studies with pregnant subjects were generally discouraged until 2018 and, to this day, pregnant participants are not included in a majority of clinical trials.
A perfect example of how this all directly impacts women’s health comes from drug development research and adverse drug reactions (ADRs):
“Across all drug categories, ADRs are substantially more common in women than men… Biological, psychological, and cultural factors contribute to the greater prevalence of ADRs in women… The lack of attention to female subjects during the early stages of drug development may have pervasive, unintended effects that contribute to the disproportionate occurrence of ADRs in women.” – Zucker, Prendergast, and Beery (2022)
Over the last few years, there has been far more discussion around women’s health research, especially with Dr. Jill Biden’s initiative, Melinda Gates’ open funding call, and other funding sources that started making waves around the issue. But the topics that fall under “women’s health” are broad, and nearly every corner of the field is starting from the bottom of a data chasm. All funding is critical, of course, but it's hard not to feel like the amounts distributed through those initiatives are just a drop in a bottomless bucket.3
As one researcher explained to me:
“People feel it, and people talk about it but we're not investing in understanding it. I think everyone just assumes there is more research going on than there actually is.”
As it relates to stress physiology, there has been some interesting research recently showing key sex differences that affect stress sensitivity, responsiveness, and recovery. This research combined with studies focused on windows of hormonal changes – e.g. menarche, pregnancy/postpartum, perimenopause/menopause – has started to uncover elements that could increase women’s risk of stress-related illness like mental health disorders, cardiovascular disease, autoimmune diseases, and metabolic disorders. Yet we still have a ways to go to understand the mechanisms underlying the connections. We do not have enough research to best assess risk and address it. And now “women” is a flagged word.
In addition, stress-related illnesses are (obviously) affected by stress but if/how gender relates to challenges that are perceived as stressors is even less understood. For example, girls and women are socialized differently and the socialized brain may pave the way for differences affecting the perception and internalization of our outside world; societal expectations and systemic gender issues could also affect stressor exposure and recovery. In addition, we do not know how certain challenges affect mothers vs fathers, women vs. men, or how such stressors differentially impacts the body or health outcomes. It is highly likely that any differences would relate to gender and gendering and affect women’s health differently4, but we still have a ways to go to understand the mechanisms underlying the connections. We do not have enough research to best assess risk and address it. And now “gender” is a flagged word.
Changes in stress physiology and the related effects on long-term health and generational health also arise from exposure to racism, early life stress, trauma and adverse childhood experiences. The effects of which are critical to understanding health disparities5. Nearly all of the research in these areas was relatively new but super promising for unlocking key factors driving human health across communities and populations but we still had a ways to go to understand the mechanisms underlying the connections. We do not have enough research to best assess risk and address it. And now nearly every word necessary for these studies are flagged words.
I used to add a “yet” each time I would have used that sentence - we do not have enough research (YET) to best assess risk and address it – but now the “yet” is in an indefinite holding pattern.
Now what?
I started this project as a way of having more productive conversations about stress and women’s health by applying the lens of motherhood, gender, culture, and society with the expectation that knowledge gaps would continue closing.
I started this project with a hopeful eye towards forward momentum and the prioritization of new research that would fill the gaps – research on parenting and motherhood; research on the female body and the female brain; research parsing out biological sex and societal gendering; research on intersectionality and stress load in communities at risk.
I started this project by accepting that we were decades – generations – away from having a full picture for how stress specifically affects women with the assumption that it would happen eventually.
I started this project with zero expectation of going backwards. But here we are.
Funding will get even tighter with a new level of decimation thanks to the administration’s sledgehammer approach to scientific research dollars. Tack on the language scrubbing from the flagged words protocol and… down the chute we go.
When evidence is required for new pathways to improve human health, but evidence requires data, and data requires research, and research requires funding … well, we will continue spinning our wheels in a state of mismatch at the bottom of those data chasms.
Even more worrying, the mismatch between available data and the impatient impulse to look for new approaches to improve health further opens the door for pseudoscience and the promise of wellness culture. Humans are naturally drawn to the cherry-picked fluff promoted as “evidence-based” information/treatments/cures. Humans love a good snake oil, especially when it comes to stress.
For clinical care and stress management recommendations that are not snake oil dependent, the mismatch and the widening gaps also leave us exactly where we started – recommendations around stress management may continue relying on a personal responsibility list that is narrow and unhelpful for many.
With all of this swirling around my head, I have to be honest, I am struggling to accept that an initial goal of this project may have a longer tail than originally anticipated.
As explained in words written nearly a year and a half ago in What is the Maternal Stress Project? And Why Now?:
“As for the Why now? — the necessary funding, research, and scientific culture shifts will take decades to fill in the gaps critical for improving women’s health. But we deserve to be healthy TODAY. If we do this right, ‘stress’ as a word, will become an actionable term while we wait for the research to catch up.”
When I started the project, I set out to conceptualize a stress framework – in the context of motherhood, parenting, caregiving, existing as a woman in American society – to bridge the gap between future research and the real, present opportunities to address the stress load and improve women’s health immediately. I aimed to build an evidence bank connecting the evidential dots available, grounded in stress biology. The bridge was always supposed to be a temporary solution — the research was going to “catch up” eventually.
Back to our game of Chutes & Ladders, women’s health research had just started advancing up the board before careening down the chute to plop down with the dunce hat.
In a country where it has become clear that our health does not matter, the dunce hat squashing women’s health research was probably always part of the plan — a plan that will continue empowering cherry-picked fluff, snake oil, and self-care platitudes as “solutions” to our stress.
I refuse to accept that plan or its repercussions.
So onward we go.
Funny enough, female fertility is the area of women's health research that gets the most funding 🤔
Even though this assumption has been debunked.
Of all R&D funding globally, only 5% goes to women's health. 25% of that is dedicated to female fertility. So... yeah... again… there's that.
This is not to say that boys and men are not exposed to stressors specific to their gender or their gendered brain. They absolutely are. The question is “why?” and “how?” and “what is stress?” when it comes to identifying and addressing the sources of stress that disproportionately affect stress-related illness on each side of the gender spectrum.
Not so “fun fact”: health disparities was not an NIH funding category until 2023. In our game of Chutes&Ladders, this field spun a one and then the whole board got tossed off the table.
Ugh, is all I can say, which certainly does not capture the depth of my feelings.
So, so shitty. :/ Appreciate having smart and passionate folks like you out there explaining and shouting from the proverbial rooftops what the implications of all this might/will be. As a junior faculty member studying the health of (now-verboten)*women*, I'm considering a reframe to "baby incubators"?