044: Trending: Why is there next to no research on women’s health?
“Almost everything we know in medicine is about men.”
Welcome to Two Truths, a bestselling newsletter & media brand exploring the many truths of motherhood from journalists & maternal health advocates Cassie Shortsleeve of Dear Sunday Motherhood & Kelsey Haywood Lucas of Motherspeak. Two Truths is rooted in the healing & affirming principle that two (or more) things can be true. It’s a “best parenting Substack” per Motherly; also seen in The Skimm, Vox, The Bump, Popsugar & more. Click here to subscribe or upgrade to a premium subscription.
Introductory note: Last week, a state Supreme Court ruling in Alabama deemed that frozen embryos could be considered children under state law, putting in vitro fertilization (IVF) treatments in jeopardy and on pause at major medical centers across the state. It is not lost on us that we bring you this issue — one about women’s health and women’s rights — at a time when women’s health and women’s rights are under fire. We will be covering the Supreme Court ruling in Alabama and its implications in next week’s issue. We hope this week’s issue informs and educates you about the background of women’s health research (or a lack thereof) in this country — and also inspires conversation, connection, and, of course, change. We also hope that you are making space for yourself and your needs amidst this news. You will find perinatal mental health resources at the bottom of this issue, should you need them. —Cassie and Kelsey
When I first started my career in health journalism, I heard a phrase you might be familiar with: “Women are not small men.” I first heard this over a decade ago while working as an editor at Men’s Health magazine (go figure), and the words stayed with me. So did something I learned in the years to follow as I continued my career: Medicine, as we know it, has largely been optimized for men.
So on Wednesday, when First Lady Jill Biden pledged $100 million in federal funding for women’s health research, it was big news. In part, that’s because this funding is the first big deliverable of President Biden’s White House Initiative on Women's Health Research, which is aimed at creating “concrete recommendations to advance women’s health research” and was announced in November.
But the announcement also exposed a very big/real/detrimental/complicated truth to the masses: Historically, there has been very little research on women, let alone on mothers — and the consequences of that are devastating.
In this special issue of Two Truths: Trending, we are diving deep into the understudied, hugely critical, top-of-mind topic of women’s health research — including (1) why women’s health is so understudied in the first place, (2) what the grave consequences of this are, (3) what needs to change to finally see change, and (4) the good work being done.
[partner content; special report continues below]
A Pledge to Prioritize Women’s Health Research
Two truths: The U.S. has the highest maternal mortality rate among developed nations, and The National Institutes of Health—this country’s primary federal agency for medical research—only spends about 10.8 percent of its funding on women’s health research. All the while, pregnancy and childbirth complications have increased, and our rights to bodily autonomy continue to be at risk. To help close this “research gap” and build a world that better supports women’s health, Perelel Health is pledging $10 million. The $10 million will be distributed to key partners including Magee-Womens Research Institute and Good+ Plus Foundation in both in-kind product donations and funding grants that will focus on advancing what we know about women’s reproductive health.
Magee-Womens Research Institute is the largest U.S. research foundation focused exclusively on women’s health, reproductive biology, and infant research and care. Founded by Jessica Seinfeld, Good+ Plus Foundation is a national nonprofit working to dismantle multi-generational poverty by pairing tangible goods with innovative services for under-resourced individuals.
“As the only female OB/GYN-founded women's vitamin company, Perelel is committed to ensuring that all women have access to medically backed care. This is why we are devoted to furthering women’s research in partnership with Magee-Womens Research Institute and creating more equity in the way underserved communities receive critical prenatal micronutrients that would otherwise be inaccessible thanks to Good+ Plus Foundation,” said Victoria Thain Gioia, Co-CEO and Co-Founder of Perelel and soon-to-be mother of four.
Join the Perelel Pledge to #FundWomensHealth by visiting PerelelHealth.com/Pages/Our-Impact to learn more or donate here.
First: To understand why women’s health is understudied, we have to rewind and look at some of the history of health research in the U.S. over the past 50 years:
In the 1950s and early 1960s, the drug thalidomide was marketed internationally as a treatment for nausea in pregnancy. Shortly thereafter, it was discovered that its use in pregnancy resulted in severe limb deformities in babies. The event led to a “cautious approach to female participation in clinical trials.” [An important note: Thalidomide1 was not approved by the Food and Drug Administration (FDA) in the 1960s — largely thanks to the work of a pharmacologist and FDA reviewer named Frances Oldham Kelsey, Ph.D., a woman who refused to approve the drug due to a lack of safety evidence.]
In 1977, the FDA recommended excluding women “of childbearing potential” from early drug trials. This included women on contraception and women whose partners had had vasectomies.
In 1994, U.S. law required that women and minorities be included in all clinical research.
In 2016, it became a requirement that NIH-funded research take sex into account as a medical variable.
The result of this history? “Almost everything we know in medicine has been about [the] white male,” Catherine Birndorf, M.D., a reproductive psychiatrist and co-founder of The Motherhood Center, told me recently.
Women have been excluded from many of the critical studies that both clinical guidelines and treatment plans are based on — and the result is a lot of question marks.
Throughout my reporting over the years, I’ve had many established physicians — leaders in their respective fields — tell me time and time again that this “gap” (as it’s often referred to) in women’s health research negatively impacts their ability to care for their patients every day. It keeps providers from being able to accurately answer questions like, “Can I take this medication while breastfeeding?”2 or, “Will this treatment work for me?” It limits the level of care that women and mothers receive.
Worse, this gap contributes to deaths. Here’s a prime and terrifying example from cardiology: In 2006, a landmark study found that it is possible to have a heart attack without having clogged arteries. This type of heart attack is more common in women than men, but up until recently, researchers didn’t really think that it was possible to have a heart attack without clogged arteries — largely because women hadn’t really been studied.
Before research like this, it was possible — plausible, even — that a woman could have gone into the hospital with chest pain, undergone scans to look for a blockage, and been told that everything was fine. She could have been told that she wasn’t having a heart attack when she very well could have been.
A few years ago, Noel Bairey Merz, M.D., the lead researcher on that study, told me: “What we showed was that it wasn't that these women were anxious or depressed and having that expressed as a bodily complaint, but rather that no one was believing that they had a heart attack.”
Here’s another example from the drug world: When the sleep aid Ambien was approved by the FDA in 1992, the group was aware that its effects may linger into the morning — and the drug came with a warning that it might cause users to walk or drive in their sleep. However, these issues impacted women far more than men due to the way the drug is metabolized — yet it wasn’t until 2013 that the FDA lowered Ambien’s dosage for women.
Those are big examples of the ways in which women have suffered and continue to suffer due to a lack of women’s health research. There are other issues, too — ones you may run into every single day in your life (more on that below).
So what has changed in the past few decades?
In addition to the White House Initiative on Women's Health Research, the White House also released a Blueprint for Addressing the Maternal Health Crisis, which included $90 million in awards to “improve maternal and infant health, particularly in underserved communities.”
In June, Congress allocated $10 million for the creation of the NIH Office of Autoimmune Disease Research (autoimmune conditions disproportionately impact women). In August, the FDA approved the first prescription pill for the indication of treating postpartum depression; researchers in different corners of the country are studying whether or not certain medications are safe while breastfeeding. Today, there’s a federal task force called Pregnant Women and Lactating Women (PRGLAC) to both ID and address the gaps surrounding safe and effective treatments for pregnant and breastfeeding women. Members of Congress have introduced bills calling for a focus on women’s health research.
Yet, despite these strides, there is so much more work that needs to be done.
While women make up more than half of the population, only 41.2 percent of participants in clinical research trials are female; and Black, Hispanic, Asian and Indigenous women are still underrepresented in research, as are pregnant and lactating women.
Also…
Women are two to three times more likely than men to experience a mental health condition such as depression or anxiety.
Chronic health conditions, including chronic pain, fibromyalgia, autoimmune disorders such as multiple sclerosis, and migraines, all disproportionately impact women, with very little sex-specific guidance on why or how to treat these issues. These issues also all attract much less funding than health conditions that are more likely to impact men.
Endometriosis regularly takes anywhere from 4 to 11 years to be diagnosed.
Perinatal mental health disorders, such as postpartum depression and postpartum anxiety (the leading complications of birth in this country), are widely misunderstood, largely undiagnosed, and lack a large field of specifically trained professionals to treat them.3
Some 70 percent of pregnant women use prescription medications during pregnancy, but many medications have not specifically been studied in pregnancy. Also, many women receive inaccurate medication guidance through message boards and other sources.
Women are more likely than men to have pain or health concerns dismissed (and this is especially prevalent among Black women and women of color).
Despite having some of the most advanced medical care in the world, the U.S. still has the highest maternal mortality rate among developed nations.
“If you ask any woman in America about her health care, she likely has a story to tell. You know her. She’s the woman who gets debilitating migraines, but doesn’t know why, and can’t find treatment options that work for her. She’s the woman whose heart attack isn’t recognized because her symptoms don’t look like a man’s heart attack, even as heart disease is the leading cause of death among women. She’s the woman going through menopause, who visits with her doctor and leaves with more questions than answers, even though half the country will go through menopause at some point in their lives.” —First Lady Jill Biden
If you’re a regular reader of this newsletter, you know that the U.S. is also in the midst of a maternal health crisis. We need more research because the other side of that is this: Upwards of 80 percent of maternal deaths are preventable.
So what can you do?
Support organizations that are furthering the mission of increasing women’s health research and fighting for women's and mothers’ needs.
Amplify female scientists and researchers who are dedicating their work to this issue.
Educate yourself and others about the women’s health research gap by reading books, listening to podcasts, and sharing your own stories.
Join in on movements — in-person or virtual — to #fundwomenshealth.
Advocate for yourself in healthcare settings: Work with providers with whom you can have open and honest conversations and who make you feel seen and heard. Ask questions. Find support through partners, doulas, friends, or family members who can be a part of your medical care. Get second opinions.
Also, remember: Sometimes, big issues like these can feel big — almost too big to tackle. And this is a big issue. There are many systems to blame for the harmful gaps in women’s health research, and many systems to be fixed. There is hope for change, there is change that is taking place, and there is much room for growth. This battle is not and should not be on moms and women to fight — and yet, here we are fighting it.
—Cassie
✨ Thanks for reading! To support this work (done between naps, after bedtimes, and before school pickups), please consider upgrading to a paid subscription (it’s just $5/month or $50/year to get the premium experience — every single issue, exclusive content and giveaways, access to the full archive of content, and more). You can also hit the heart button to tell us you enjoyed this issue, share it on social media (don’t forget to tag @twotruthsmotherhood on IG), or forward it to a friend. We appreciate you. —Cassie and Kelsey
In the 1990s, Thalidomide was approved by the FDA to treat a blood cancer called multiple myeloma; it’s also used to treat new lesions of leprosy.
If you are pregnant or breastfeeding and seeking guidance about the safety of medications, these resources can help:
If you’re struggling with your mental health during pregnancy or postpartum, help is always available. Find a trained provider at psidirectory.com or call the Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262).
Resources and Support For Maternal Mental Health
Emergency assistance is available 24/7 at 911
The National Suicide Prevention Lifeline is available 24/7 at 988
The National Maternal Mental Health Hotline (1-833-TLC-MAMA or 1-833-852-6262) provides access to a trained counselor 24/7 and is available in Spanish and English
Postpartum Support International provides educational resources on PMADs, free support groups, webinars, advanced trainings for providers, and more
Postpartum Support International’s provider directory includes a list of thousands of trained professionals organized by state
The Motherhood Center offers counseling, support groups, and webinars
The Postpartum Stress Center offers educational resources, counseling, a referral list of trained providers, and advanced training for providers
SUPPORT YOUR MENTAL HEALTH WITH POSTPARTUM SUPPORT INTERNATIONAL (PSI). PSI is a global champion for perinatal mental health that connects individuals and families to the resources and support needed to give them the strongest and healthiest start possible. Visit postpartum.net for information on perinatal mental health disorders, access to 30+ free, online support groups, an online provider directory, the PSI HelpLine, local support coordinators, a perinatal mental health discussion tool, specialized support resources, and more. Call the PSI HelpLine toll-free at 1-800-944-4773 for basic information, support, and resources. Support via text message is also available at 800-944-4773 (English) and 971-203-2773 (Español). Remember: You are not alone. You are not to blame. With help, you will be well.
I’m reminded of one of Courtney Maum’s recent posts: https://open.substack.com/pub/courtneymaum/p/last-night-an-ent-saved-my-life