Tag: Pregnancy

WP_Post Object ( [ID] => 9639 [post_author] => 15 [post_date] => 2025-09-19 12:01:38 [post_date_gmt] => 2025-09-19 12:01:38 [post_content] =>

Too many promising breakthroughs in women’s health research stall out due to a lack of funding. I’m trying to remove the roadblock for just one.

I was flat on my back on the cold tile of my bathroom floor, with a wet washcloth over my forehead, when I first learned about Dr. Marlena Fejzo’s work. It was December 2023. I was four months pregnant. While I had experienced some nausea in my first pregnancy, my second was an order of magnitude worse, and the bathroom floor was where I spent most of my time, always within arm’s reach of a toilet.

But scrolling through the headlines that day, I found a surprising glimmer of hope. Dr. Fejzo had cracked the code on understanding severe morning sickness, proving a genetic link between the mechanism of pregnancy nausea and vomiting for the first time.

As I fought off another wave of my own nausea, reading about her research felt like a lifeline. Someone was figuring this out. And if a scientist had made such a huge breakthrough, surely treatment couldn’t be too far behind. Not for me, of course. But for women after me.

Right?

It’s important to understand how limited the understanding of pregnancy nausea and vomiting (NVP) was before Dr. Fejzo’s work—and, largely, still is. Nearly seventy percent of women experience some degree of NVP in pregnancy, and yet, before Dr. Fejzo and her collaborators, doctors didn’t know what actually caused it.

Prior to 2023, the historical hypothesis was that hormones, such as estrogen and HCG, were somehow implicated in NVP—but a causal link to nausea and vomiting had never been demonstrated. Just eighteen months ago, my own OB told me, “We don’t know what gives some women morning sickness. Probably those pesky hormones.” (Pesky hormones is not, to my knowledge, a medically meaningful term.) The current edition of perennial bestseller What To Expect While You’re Expecting, updated in 2024, also states that “no one knows for sure what causes pregnancy nausea.” As if vomiting were just part of the elusive mystery of sacred motherhood, not a biological phenomenon that deserves care and answers.

Angered by the lack of medical information on the subject, Marlena Fejzo approached NVP research from the perspective of a geneticist, and that of a survivor. In 1999, Dr. Fejzo had herself suffered from hyperemesis gravidarum, or HG, the most severe form of morning sickness—a debilitating condition which can quickly lead to severe malnutrition. Her doctor was dismissive, accusing her of exaggerating her symptoms and attention-seeking, all while she was fully incapacitated and rapidly losing weight. Tragically, despite a last-resort feeding tube and seven different medications, her condition became too advanced and she lost her pregnancy at 15 weeks gestation.

In the 25 years since, Dr. Fejzo has been committed to researching HG. Her early efforts moved slowly, with little to no funding, carried out alongside her day job researching ovarian cancer. (Complicating her efforts, women vomiting to the point of incapacitation have a hard time participating in research trials.) Dr. Fejzo partnered with the Hyperemesis Education and Research Foundation to set up a web portal, then contacted affected patients individually to obtain DNA samples.

Her work took a huge leap forward when she partnered with private genetics company 23andMe in 2010 to include a question about HG in their health surveys. From those responses, and the genetic data of 50,000 women, Dr. Fejzo was able to determine that HG had a strong genetic link. The greatest risk factor was in a gene that codes the hormone GDF15—which occurs in all humans, but is produced at the highest levels by the placenta. This finding was immediately exciting to Dr. Fejzo. High GDF15 levels were already known to occur in late-stage cancer patients with cachexia, a syndrome that causes weight loss, appetite loss, and muscle wasting—all similar symptoms to pregnant people suffering from HG. The evidence was lining up.

Together with international collaborators, in late 2023, Dr. Fejzo released a groundbreaking paper in Nature, titled GDF15 linked to maternal risk of nausea and vomiting during pregnancy. Simply put, Dr. Fejzo and her collaborators had cracked the code on morning sickness. Even better? Their work suggested methods of prevention and treatment.

When Time Magazine named Dr. Fejzo one of its 2024 “Women of the Year,” they noted, “Fejzo is now applying for funding for a clinical trial to test whether the drug metformin—which is approved to treat Type 2 diabetes but is used off-label for numerous purposes and has been shown to raise GDF15 levels—works as a preventive therapy.”

I was thrilled to hear it. For women who had experienced HG before, or had a family history of it, or who could, hypothetically, take a blood test to gauge their risk—preventative therapy would be life-changing. And, in some cases, life-saving.

The problem, as it turned out, was finding the funding to do it.

Six months after I first read about Dr. Fejzo—this time, attempting to rock a newborn to sleep—I saw a post on a pregnancy message board about an incredible women’s health researcher who could not get funding for a clinical trial.

I almost scrolled by the post, convinced it couldn’t possibly be about the same researcher I’d first learned about while incapacitated on my bathroom floor. But then, I saw her name—and immediately stopped scrolling.

My first naive assumption: that the great capitalist machine would have a profit motive in preventing a condition that affects millions of women—something those women would do anything to solve. My second naive assumption: that promising research gets funded publicly. The post I was now looking at disproved both—a reality that felt equally disillusioning and enraging.

Part of the problem, as it turns out, was precisely that Dr. Fejzo’s research was such an outlier. Since Dr. Fejzo is the only full-time HG researcher in the country, grant review boards still don’t have the expertise to properly review her applications. When researchers of under-studied conditions do not have peer scientists to advocate for them and their research, their work often goes overlooked. As Caroline Criado Perez writes in her book Invisible Women: Data Bias in a World Designed for Men, “It’s not always easy to convince someone a need exists if they don’t have that need themselves.” As of writing, Dr. Fejzo has been denied seven different grants.

Learning this, my vague notions of “science” and “progress” quickly crumbled. I’d previously had some kind of faith that medical problems existed; and then scientists solved them; and then we all benefited. But of course, there is no abstract body of “science,” and scientists are people who require resources to perform their work. It had never occurred to me to question where, exactly, those resources actually came from.

Scientific breakthroughs do not, on their own, produce follow-up funding. Neither does media attention or critical acclaim. Visibility is important, of course. But it doesn’t automatically turn into dollars. As Time noted, Dr. Fejzo had intended, and still intends, to launch her clinical trial with an existing generic drug, metformin—something already known to have a good safety profile in women trying to conceive, lowering potential risk for participants. But the use of this drug is also why there’s no profit motive for pharmaceutical companies to invest some of the $83 billion—with a B—dollars they put into research and development each year: The drug already exists.

Moreover, resourcing women’s health research funding, already challenging, faces stiffer headwinds than ever. As of 2020, only 5 percent of healthcare-related R&D efforts are targeted specifically at women’s health issues—and most of that is dedicated to female-specific cancers, leaving only 1% of all medical research dollars invested in all other female-specific conditions, including maternal health conditions, menopause, endometriosis, and the like.

While the women’s health gap is a global issue, it feels particularly acute in the United States of 2025, where the current administration has also made abundantly clear that they do not consider women’s health a priority. The New York Times reported that terms such as “female,” “uterus,” and “mental health,” painted with the indiscriminate brush of “DEI,” can get a grant submission flagged for further review. According to JAMA (The Journal of the American Medical Association), overall grants disbursed by the National Institute of Health (NIH) are down $1.8 billion in 2025. Recently, NIH funding for a landmark women’s health study of 40-plus years was revoked, before being reinstated due to public outcry. Meanwhile, even research grants for active scientific projects face termination when they “no longer meet agency priorities.” (A quick perusal of these terminated NIH grants includes plenty with “pregnancy,” “breast,” or “ovarian” in the title… and none with “prostate,” “penile,” or “testicular.” Priorities, indeed.)

In just the last eight months, Dr. Fejzo has spoken at the White House, lectured at Harvard and Yale, and won prestigious awards. Her most recent paper in the American Journal of Obstetrics & Gynecology garnered a great deal of attention from the OB-GYN community; and her work has been extensively profiled both in major outlets such as The Guardian, and influential parenting newsletters like Emily Oster’s ParentData. There seems to be a consensus that this work is essential; that it deserves attention and further research. Yet none of this has actually translated to funding.

This enraged and frustrated me. I found the pregnancy message board post and got in touch with its author—who, it turned out, had been desperately hoping Dr. Fejzo was already conducting clinical trials, and had been devastated to learn they hadn’t even yet begun. She put me in touch with the researcher herself. “In terms of fundraising, I need all the help I can get,” Dr. Fejzo emailed me.

Over the course of several conversations, hearing about her difficulties in obtaining funding and the incredible promise of her work, I became convinced that someone needed to be a champion for Dr. Fejzo’s work. And it might as well be me. This is how I—a complete outsider, whose last brush with genetics was MOLBIO 101 twenty-odd years ago—launched myself into fundraising for medical research.

Some familiarity with the nonprofit world was a big help. Since Dr. Fejzo works at the University of Southern California, donations to her work are routed through USC as a 501(c)3 research university, making them eligible for tax deductions, some corporate matching programs, and various other mechanisms that make a donation financially advantageous. (And supporters aren’t writing a check to an entity they’d never heard of.) I also worked with USC to set up an ongoing crowdfunding page so that interested people can donate any amount directly to Dr. Fejzo’s research fund and share within their own networks, GoFundMe-style.

I’ve made deep connections in incredible women’s funding networks such as Women Moving Millions, whose bold members are dedicated to advancing women’s well-being in every arena. We’ve hosted a number of webinars where anyone interested could hear from Dr. Fejzo directly. I leaned on the advice of friends in the academic and media worlds; I tapped every alumni and professional network I had. I dug around for matching programs through organizations including #HalfMyDAF and Pivotal Ventures that could leverage existing gifts; I got social media boosts from the HER Foundation, which does incredible work supporting and connecting hyperemesis patients and providers.

And finally, I’ve spent the last 10-odd months talking up Dr. Fejzo’s work to absolutely anyone who will listen. I’ve found that friends and colleagues are pretty interested when you adopt a single-minded crusade against morning sickness. (One stone still unturned: celebrity outreach. I haven’t found a contact for Princess Kate yet, who publicly shared her harrowing experience with HG during all three of her pregnancies. If you happen to know her, put us in touch.)

We’ve raised nearly $750,000 thus far, a testament to the power of collective action. But we still have a long way to go: Dr. Fejzo needs $1.3 million to go forward with her clinical trial—a sum of money which is both significant, and yet so tiny in the scheme of research dollars.

As my fundraising has shown me, though, this is completely doable—because I’m not the only one who feels motivated by Dr. Fejzo’s work. There is a true hunger for her research among women who have previously suffered HG. In fact, many individuals have emailed Dr. Fejzo—who, again, is a researcher, not a medical doctor—to ask whether she might help their own doctors suggest a metformin protocol. Essentially, pregnant people are volunteering themselves as studies of one, outside the controls and protections of clinical trials, out of sheer desperation for a better alternative to the pain they’re suffering through.

I think back to my own experience. I did not have full-blown HG; I had a less severe experience with nausea and vomiting that, while deeply disruptive to my everyday life, was not ultimately dangerous to me or my baby. Yet I still emerged from the experience absolutely desperate for better care. I would have done anything in my power, and paid anything within my means, for the nausea to go away. For women who end up hospitalized, it’s many orders of magnitude worse.

This is also why Dr. Fejzo’s inability to access followup funding makes me so angry. I’m angry that women’s pain isn’t considered a priority. Angry that women aren’t considered reliable narrators of their own experience. Angry that a primary response to any complication during pregnancy seems to be “suck it up.” That women, and pregnant women especially, are given vague assurances like, “Your baby is fine! It’ll get what it needs,” without any evidence to support those claims. (Oh, you’re vomiting multiple times a day? Well, didn’t you want a baby? What did you expect?)

This anger is motivating. But for those suffering from HG, it’s impossible to harness that rage into action while utterly incapacitated, fearing for the safety and health of your baby and yourself. HG can be dehumanizing—taking away your ability to advocate, fight, or do much more than exist. It’s on the rest of us, then, to rally for those who can’t.

Where funding goes, and where it doesn’t, communicates something unmistakable about what society values—and clearly, addressing women’s suffering does not rank very high on that list. So what can we do? Well, we can start by crowdfunding one critical clinical trial, then another, and another. Collectively funding public good is a foundation of society, and perhaps it can continue despite the failure of official systems to support it, if we come together to put our dollars where they count.

Should there be better ways to fund this kind of research? Yes. Are there better solutions than crowdfunding out there? Maybe. But until then, it’s time we reclaim some control, and fund the damn research ourselves.

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September 19, 2025October 10, 2025

Let’s Fund the Damn Research Ourselves

by Carey Jones

WP_Post Object ( [ID] => 8363 [post_author] => 15 [post_date] => 2025-05-20 20:08:39 [post_date_gmt] => 2025-05-20 20:08:39 [post_content] =>

One would hope that something that happens so frequently would be discussed. But overwhelmingly, it’s not—until, as I learned, you join the miscarriage club yourself.

For an LA storytelling show in 2009, I wrote and performed an essay called “The Cinderella Instinct,” a piece detailing that cut-and-run gut feeling nearly every woman in her 20s cultivates from continuously escaping predatory men. Easing the audience in with the softball line, “Every man is a potential rapist,” I launched into stories detailing the many times I’d quite literally run away from an uncomfortable situation with a possible predator—from hopping out of a convertible at a rolling stop in Hollywood to sprinting from a shirtless Frenchman through a deserted, deeply unsavory part of Nice.

At the essay’s conclusion, I reflected on how, while I’d escaped potential assault throughout my life so far, 1 in 6 women do not—including some of my best friends, and my sister, whose story I shared with her permission. Perhaps my “luck” was partly because my stories had involved strangers, whereas assault has always been more likely to occur from someone you know, as it had with my loved ones. “So who that I know is the real potential rapist?” I’d written in the original essay. “Is it you?”

Granted, they made me cut that final line in my performance, deeming it a bit too much truth telling for a comedy night. Because of this, it wasn’t until some handful of years later, with the advent of #metoo, that I thought we might finally be ready to address the question—and that things might start to shift.

Reader, we did not cleanse the world of rape culture. But, at least, we began to talk about it, and to me, that felt like progress.

A decade on, I’d survived the end of my twenties, and spent most of my thirties setting the stage for a deeply healthy marriage (pro-tip: couple’s therapy while dating!). Then, I fell face first into yet another hidden gem of womanhood—a very different pile of bullshit our culture has encouraged women to shovel through in silence.

I had a miscarriage.

While there’s been a slow thaw towards openly talking about miscarriage thanks to social media, the word itself still contains an air of old-timey superstition and precious shame in most everyday contexts, something I would quickly learn in the aftermath of my own. Even now, chatting with friends or neighbors, I’ve found the word “miscarriage” invokes an involuntary wince, in both myself and others, because it’s just not something we talk about in a casual way.

Meanwhile, in a medical setting, doctors will bluntly inform you of how wildly common miscarriage is, ending 1 in 4 pregnancies, mostly in the first trimester and often before you’ve even realized you’re pregnant. One would hope that something that happens that frequently would be—I don’t know—discussed? But overwhelmingly, it’s not—until, as I learned, you join the miscarriage club yourself.

I’m not going to get into the public political discourse on pregnancy here—that would require several books, not an article. But with the trend of states legislating a stranglehold on women’s reproductive rights, it feels more important than ever to have open, candid, and clear conversations about the reality of pregnancy—including potential miscarriage. And that means sharing our stories, no matter how uncomfortable, so that we have a realistic, informed, and nuanced view on the many things becoming pregnant can entail.

So, here’s mine.

I’ve never felt the clicking of my biological clock, but after blissfully devoting my 30s to self-producing edgy physical theater with my co-performer-turned-husband, I realized if we wanted to procreate, we’d better get a move on. So, we survived a global pandemic, got married, and had a year’s worth of unprotected sex—until one day, just like I learned, I peed on a stick and found out I was pregnant. Like magic!

As an information-seeking, newly pregnant woman of advanced maternal age, I’d already worked hard to mentally prepare myself for possible miscarriage. I knew the 1-in-4 statistic, how spontaneous miscarriages are very normal, and that they’re often chromosomal and don’t mean anything negative about a couple’s ability to have children. Still, in the early days of my pregnancy, my mind raced, mapping out the ticking 40-week time bomb of our life. To me, my pregnancy was real the minute that pee stick said so; and I took any advice I could find, whether from doctor friends or the internet, avoiding deli meat and sushi, abstaining from alcohol and Advil, and quitting my nighttime melatonin. At the same time, I tried to hold the simultaneous truth that this pregnancy could be nothing—that I could be one of the unlucky ones—trying to temper my own anticipation until enough time had passed to make it “real.”

To make matters worse, I’d found out I was pregnant a few weeks before my husband and I were scheduled to shoot pick-ups in Los Angeles for the film adaptation of one of our aforementioned edgy plays. I was dismayed to learn the doctor wouldn’t see me until I was 8 weeks pregnant—right when we were out of town—because of the prevalence of miscarriage in the first trimester. As she explained, it wouldn’t make sense for them to see me until the pregnancy was really viable, so they scheduled my check-up for when I would return to New York, at the top of week 11.

Lacking a doctor’s guidance, I felt like I needed a master’s in philosophy and a zen Buddhist practice just to navigate the mindfuckery of early pregnancy. This potential baby was both alive and not at the same time. It was Schrödinger’s Cat, but in my womb. During this time, I also had several experiences where I'd cautiously divulge to a trusted friend that I was in my first trimester—always sharing that I knew I was "not supposed to tell anyone." But nearly every time I offered that caveat, people would actually shush me—as if uttering the word "miscarriage" while pregnant would invite it in. They insisted that if I believed things were okay, they would be; and as time continued to pass, I grew more confident that they were right, that I could trust my pregnancy was real. My cautious internal caveat of “I could miscarry” began to lose its footing. In my mind, Schrödinger’s baby was alive.

Back in New York, my husband and I excitedly went to our doctor’s appointment. The vibe was immediately optimistic and pleasant: We’d just made it to week 11, and after having a discussion about all the nightmare things we’d have to monitor for the next 30-odd weeks, things felt pretty real. Then, we got around to the ultrasound. At first, the doctor couldn’t really “find” the pregnancy visually. Which... seemed bad. Then, once she did, she noted that it looked closer to 7 weeks, not 11.

The vibe shifted.

The doctor asked about the timing—could we have mistaken the date of conception? In response, I showed her my overachieving honor student psychopathic period tracking data, and her expression changed. Suddenly, the life-changing timeline that had taken shape over the past weeks started to crumble. The following week’s nuchal translucency, done at week 12, was changed to a "dating sonogram.” Later, in my patient notes, I saw it was actually to check viability: No heartbeat had been detected.

While I was too blindsided to think clearly, my husband luckily had the presence of mind to ask what all of this actually meant. Finally, the doctor explained how the sonogram was to confirm if this was an "abnormal pregnancy." If it was, we'd discuss next steps of how to "remove" it, and we'd be able to "try again" basically right away.

Since this was a Friday appointment, we would have to wait an agonizing weekend before getting official answers at Monday’s sonogram. During two endless days of a new, unwelcome brand of uncertainty, I sat in my paradigm’s reversal, going from 95% sure I was pregnant to 95% sure I was not. In this purgatory, I tried to catch up to a new reality while still occupying the old truths I’d come to accept. Like a prayer or superstitious tick, I kept avoiding lox, soft cheese, and alcohol when we went out to eat, but I also cried for hours in anticipatory mourning.

That Monday, the doctor confirmed I had, in fact, miscarried a couple of weeks prior. Turns out there's a thing called a "missed abortion," where you miscarry but it doesn't actually leave your body, and you still feel totally fine. I’d always thought miscarriages were marked by cramping and bleeding and a big event—but no, mine was just straight chilling in my body for weeks, something I found horribly disturbing, but is medically normal. (Yet another thing no one talks about, and something I only learned of after it had happened to me.)

Going through the psychological whiplash of accepting that I was no longer pregnant felt even harder given all those hushed conversations that had preceded it. I felt like this pain was something no one wanted to hear about, or talk about—that I wasn’t allowed to talk about it. But then, something surprising started happening. The minute I would get over the fear of divulging my story—and the fear of making other people feel uncomfortable, sad, or awkward by being truthful about what I’d been through—all of these other stories began emerging around me. Women I’d known for years began privately sharing their own experiences with me—how they’d miscarried both before and after carrying successful pregnancies, how they’d had to endure D&Cs during IVF, how they had held the image of their future child in their heart and had struggled to let it go. Once I learned just how many women around me had carried the same pain, the powerful loneliness around my miscarriage fell away. And while feeling grateful for the empathy and support these shared stories gave me, I also felt sorrow that I’d never heard them before—that these women only now felt like it was safe or acceptable to share them with me because I’d gone through it, too.

It was also through hearing about other women’s experiences that I learned, in at least one respect, I’d been very lucky. One small silver lining of my story was the team of spectacular women doctors who saw me through my miscarriage as quickly and empathetically as possible—something a doctor friend informed me is "very unusual for OBs." They worked to get me seen within the week of my sonogram, and upon noting my distress, the doctor doing my D&C worked to fit me in at the hospital the next day so I could go under anesthesia. When I thanked her for all her efforts—knowing how glacially slow the medical world usually works—she simply said, "1 in 4 of us have been there, we know how important it is to get past this as quickly as possible so you can heal." That same empathy was echoed by virtually every woman who saw me through my care, from both of my doctors to the receptionists booking my appointments to the nurses in the hospital. (Weill Cornell… Thank you.)

Still, it took me nearly a year to feel well enough to write about any of it. This is partly because I had to grapple with my own internalized conceptions of what a miscarriage “means,” even while knowing intellectually that it does not “mean” anything. I was raised on a German workhorse ethic, believing anything I put my mind to I can make happen, so a “failed” pregnancy did not fit into my sense of self. Plus, navigating the term “infertility”—which suddenly gets slapped on you medically after miscarriage—has been far from easy, especially in a culture that seems obsessed with women’s reproductive viability, and how many years past the age of thirty they dare to age.

But as I’ve worked to come to grips with these many things that lie beyond my control, I hope that sharing my story can help start some necessary conversations. That maybe my sharing will help someone feel a little less alone in the same way so many women helped me feel a little less alone, too.

I won’t sugarcoat it: Miscarriage sucks. It’s sad. And no one likes talking about sad shit. But based on my own experience, I think we need to talk about it. Because when we don’t—when we carry it alone, when we shush the possibility of its existence—we give it unnecessary weight. So many others are carrying this, have carried it—and it shouldn’t feel so heavy. But to make that possible, we need to catch up culturally to the reality of miscarriage medically: It’s normal. Often, it’s your body resetting from a pregnancy that was not ready to cook. Whatever the root reason, it’s not a failure. It’s just another one of those things that happens.

When we stigmatize miscarriage by refusing to talk about it or treating it as a tragedy, we’re setting women up to feel isolated and broken, to feel like they’ve failed. I’ve found that, by talking about my own miscarriage openly, without hesitation, I’ve helped redefine what it means to me personally: It’s not a failure, and no one is to blame. It’s just another one of many steps along the road, a moment of sadness I’ve endured and moved beyond. It can feel tragic, but it is not a tragedy. It is normal. You’re normal. And if you need to feel sad, just know: There is a whole world of women out there sharing the weight of this with you, whether you realize it or not.

Author's Note: I’ve referred to people who can get pregnant in this essay as “women,” as it is a deeply personal story, written from my perspective as a woman. However, with so much rampant transphobia in culture and politics right now, I want to make clear that people beyond the traditional gender binary can get pregnant, and can also experience miscarriage—and I emphatically believe they should be included in this conversation.

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May 20, 2025September 16, 2025

We Need to Talk About Our Miscarriages

by Nikki Muller

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