Why Are Women's Reproductive Health Issues Given Less Attention And Research Money Than Alzheimer's?
Gender disparity in medical research is a reality, not just some feminist talking point. But the issue is more pervasive and complicated than it may seem and exposes the fact that our culture is increasingly uninterested in reproduction.
In the post-fourth wave feminist West, it’s almost taboo to point out how individuals with XX chromosomes are fundamentally different in many ways to those with XY chromosomes. Yes, women can and should still be equal in the eyes of the law to men, but we also differ from them in many of our bodily functions. Denial of these inherent, biological truths could actually set us up for failure. For instance, have you ever noticed just how pervasive gender disparities are in medical research?
Most studies commonly circulated to promote the benefits of intermittent fasting (IF) exclude women. Yet, diet advice gurus praise the lifestyle for both genders despite the fact that women’s metabolisms evolved to respond to fasting periods differently from men's. Spoiler alert: Our bodies aren’t built to thrive on IF like men’s can. In another case, the U.S. Food and Drug Administration actually had to walk back recommended dosages for Ambien after it was discovered that women routinely overdosed on it – two decades after the sleeping pills got approval.
These two examples demonstrate what we know to be women’s chronic underrepresentation within clinical trials and other health studies, but the problem runs even deeper than that. Coupled with gender disparity in the funding of health research is the fact that women’s reproductive health issues in particular are underfunded and often overlooked. And ultimately, we’re only worsening our quality of life, reproductive success, and the continuation of the human species if we don’t address these disparities.
Just How Common Are Autoimmune, Endocrine, and Reproductive Issues Anyway?
Recently, a tweet thread came across my timeline from a user named Nicole Ruiz, who said that she was “literally not exaggerating” when she said a third of all women she knows have some sort of endocrine or autoimmune disorder like polycystic ovary syndrome (PCOS), endometriosis, lupus, Hashimotos, or other thyroid issues.
Ruiz said that all the aforementioned women are in shape, cook their own meals from scratch, and have either never been on hormonal birth control or never had those issues before going on the drug. In response, another user pointed out how this phenomenon is a byproduct of women’s health issues “being vastly underprioritized and underresearched.”
Indeed, they are. Women comprise nearly 80% of people who suffer from autoimmune diseases, like the ones mentioned above by Ruiz. Our reproductive health issues (which are often tied to endocrine health issues) can impact our mental health, work, education, and overall day-to-day life.
Even though endometriosis is becoming more and more common (or, at least, given more attention and therefore a higher rate of diagnosis), it’s one of the most underfunded diseases. Some say this is because it’s a complicated disease that could take on average 8.5 years to be diagnosed, and is often misdiagnosed as a bowel or digestive disorder. In response, both the U.S. government and the National Institutes of Health (NIH) have announced an increase in endometriosis research.
“Historically, with limited investment in research into women’s health in general, there’s been so little investment in research into endometriosis that we don’t even know what causes it, and without knowing the cause, a cure cannot be found,” reads one 2020 report from the UK government on the disease.
1 in 10 women are reported to struggle with endometriosis, including actresses Sarah Hyland, Emma Roberts, Daisy Ridley, and models Olivia Culpo, Chrissy Teigen, and Alexa Chung.
Then you have PCOS. Researchers suggest that, despite “its prevalence, economic burden, metabolic morbidity and negative impact on quality of life,” research on this hormonal disorder is underfunded. The World Health Organization (WHO) estimates that upwards of 13% of reproductive age women are affected by PCOS, but say that up to 70% of women worldwide who are affected have yet to even be diagnosed.
According to endocrinologists, there are major gaps in PCOS literature that further complicate long-term risks related to the disorder, like connections to cardiovascular diseases. Historically, PCOS hadn’t even been listed in the NIH RePORTER database, a tool for NIH-funded research projects, publication, and patent information.
Compared to rheumatoid arthritis or tuberculosis, for example, PCOS research is relatively less funded and receives fewer grants. In general, analysis demonstrates that the funding raised and spent on women’s health issues is not in alignment with the severity and burdens of the diseases.
Are Women Just Hysterical and Making Things Up?
It’s no secret that the general narrative around a host of female-specific health issues has been to render them taboo. Gender biases in healthcare have caused some women to feel trivialized by their providers, and while some conditions are indeed psychosomatic (a.k.a. physical pain caused by mental stress, anxiety, or depression), it’s not helpful to a patient’s best medical outcomes to brush off symptoms as hysteria.
Furthermore, while some providers may consciously gloss over women’s health issues, most likely do so unconsciously. Again, this narrative is ingrained in our culture – so much so that the term “hysteria” actually derives from the Greek word for “uterus.” No, it’s not really sexy to talk about period cramps or intermenstrual bleeding, but by not talking about these problems, they don’t simply go away.
Take severe morning sickness, for example. Over 70% of women experience nausea or vomiting to some extent in relation to their pregnancy, but some of these women could be suffering from hyperemesis gravidarum. It’s a rarer condition that could induce vomiting up to 50 times a day and cause extreme dehydration to the point of hospitalization.
What’s more, this issue can last throughout a woman’s entire pregnancy, and some medical professionals shared that women have actually chosen to abort their baby because they just couldn’t deal with the chronic, severe nausea and vomiting.
One sufferer shared with Cosmopolitan that she lost two stones in a few weeks (yes, nearly 30lbs!) and panicked about not being able to safely carry her baby to term. Sadly, this condition gets confused with a case of bad morning sickness. And what do you know, the NIH has reportedly funded only six studies on hyperemesis (totaling $2.1 million) since 2007.
Are women just randomly going bonkers after they give birth, or is postpartum psychosis a real and tragic mental health condition? The latter is much more realistic than the former, yet Mount Sinai’s director of the Women’s Mental Health Program, Dr. Veerle Bergink, shared with the New York Times that “there is no money for it [postpartum psychosis], not for research, not for treatment. There are no guidelines. This is one of the most severe conditions in psychiatry, one that has huge impacts on the mother and potentially on the child, and there’s nothing.”
Cardiologist Jennifer Hermina Mieres, MD, said in an interview about gaslighting in women’s health that while science and evidence have improved to demonstrate just how much sex differences impact the severity or symptoms of disease, the delivery model for healthcare in America is lagging behind.
"We still have many mid-career and senior physicians whose practice of medicine is based on the ‘one-size-fits-all’ approach to diagnosis and treatment,” Dr. Mieres said, pointing out how a sex-based approach for disease management might not be on some practitioners’ radars.
Taking a Sex-Based Approach To Studying Disease
We know that women have been historically underrepresented in health studies, but the exclusion hasn't necessarily been done in malice. What began as a general unawareness of the fact that men and women develop disease or respond to medication differently eventually evolved into intentional bans. The FDA once banned most women with “childbearing potential” from participating in clinical research due to drugs (like thalidomide) potentially causing birth defects, for instance.
Now, some in the medical industry are warming up to the physiological differences between men and women (in other instances, progressive medical professionals demand otherwise and expect gender-neutrality), and women are more welcome to participate in clinical research trials. However, a sex-based approach for inclusion may not be enough either. As it stands, analysis of NIH research funding allocation found that in nearly three-quarters of sex-specific disease research, diseases that affect more men are overfunded while diseases that affect more women are underfunded.
As logic follows, disease areas that affect both sexes receive more adequate funding than strict “women’s issues,” such as Alzheimer’s. Due to our longer lifespan on average, women are at greater risk of developing old age diseases like dementia, to the extent that twice as many women to men have Alzheimer’s disease. Still, both sexes can be affected by dementia – and the disease costs Americans an estimated $321 billion each year – so it makes sense that the NIH would pump over $3.7 billion into funding for Alzheimer’s and dementia research annually.
We want our population to have longevity, we want to understand ways to reduce risk, we want to discover early symptoms or biomarkers that could lead to diagnosis sooner rather than later, and we want to develop safe, effective treatments. But what message does it send to fertile age women to know that much of their reproductive healthcare is still a medical mystery? Longevity is certainly important, and it would be unwise to disregard funding for something like Alzheimer’s research, but we should still care about the quality of the life you’re living to reach old age.
Women have had issues reproducing for a long time, but historians have noted that in years long gone, pregnancy would be addressed using euphemisms for sickness, for example. Miscarriages were sometimes described as a woman suffering from a cold because of the social silence surrounding the loss of a child.
Since miscarriage was and is such an emotional, intimate issue, it can be difficult to know how many pregnancies end in miscarriage. If they’re not recorded in official statistics nor spoken about to medical professionals, how do we know they’re happening? Today, it's estimated that upwards of 20% of pregnancies end in miscarriage, but the guilt, shame, grief, and trauma surrounding miscarriage make it difficult for women to discuss. As a result, funding for research related to miscarriage is similarly lacking.
We’ve Fostered a Culture Uninterested in Reproduction
This is a quintessential example of how we lack resources to help women reproduce. Many people don’t understand why miscarriage happens, incorrectly (but perhaps not intentionally) exaggerating how common it is to miscarry from lifestyle choices like alcohol usage, stressful life events, or even lifting heavy objects.
Medical and genetic reasons are to blame for a majority of miscarriages, such as embryos getting the wrong number of chromosomes (aneuploidy) or the mother having hormonal imbalances, uterine abnormalities, thyroid disease, or other endocrine or autoimmune disorders.
Again, these are all disease areas that have been chronically underfunded and deprioritized by the medical industry. All this does is leave women in the dark about their own bodies and leave men feeling confused about how they can help their loved ones cope with medical issues.
Increasingly, both men and women are suffering from reproductive problems at alarming rates. Total fertility worldwide continues to decline, men’s testosterone levels and sperm counts are dropping, and women’s rate of miscarriage is rising. For women, the most common fertility struggle is due to irregularities in ovulation. Many have to take hormone therapies to induce ovulation if they’ve experienced a lapse in this normal hormonal cycle due to underlying comorbidities or perhaps chronic suppression of ovulation from birth control.
We’ve arrived at a new culture surrounding reproductive health that appears to be singularly focused on preventing reproduction in as many ways as possible – from over-the-counter birth control to the destruction of viable life through abortion. It’s naive to think that this casual anti-natalist mentality is actually helping us, not hindering us.
Why aren’t we prioritizing helping women reproduce healthily? Isn’t it in our best interest to understand our hormonal cycles, be able to detect when we’re experiencing abnormalities, and not feel gaslit or shamed by the healthcare providers we trust with our most intimate health information?
Closing Thoughts
Gender disparities in health and medicine are a multifaceted issue. From normal “period pain” being written off when it’s actually ovarian cysts, or chronic, persistent feelings of depression being treated with SSRIs when it’s actually caused by an autoimmune disorder, women’s health issues are indeed misunderstood and, as a result, misdiagnosed.
If the medical industry put more resources into funding sex-specific health issues for women, perhaps we wouldn’t have so many doctors disregarding symptoms or having inadequate solutions for worsening reproductive health problems. This isn’t such an easy task. The NIH operates on a $45 billion budget to award grants, contracts, and aid for loans, and is supposed to be non-partisan and non-political in nature. But politicians and pundits alike have called out the agency for potentially operating on misguided, “woke” priorities.
Women’s reproductive health is a very valuable investment that needs to be given more attention not only by the government, but by private investors, universities, charities, and other research institutions that fund medical research. Our bodies work in many, many similar ways to our male counterparts, but we’re the ones with the potential to carry the next generation of humanity. Let’s make sure we can actually do so safely, naturally, and with fewer roadblocks along the way.
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