Carolyn Witte describes a journey all too familiar for many women: trying to solve a medical mystery.
Witte spent her early twenties besieged by pain in the lower half of her body, and like nearly 50 percent of young U.S. adults, she didn’t have a primary care provider. She spent three years bouncing from specialist to specialist, Googling symptoms, and browsing Reddit forums in search of solutions. “I was getting the same test multiple times over, conflicting Band-Aid solutions, and no real answers,” recalls Witte, who felt that doctors weren’t taking her pain seriously. “Most [medical] providers were like, ‘Here’s a pill to help address some of these issues… and good luck.”
At age 25, Witte diagnosed herself with polycystic ovarian syndrome (PCOS), a hormonal disorder that affects one in 10 women. The diagnosis was later confirmed by a fertility specialist, but the entire ordeal stuck with Witte. She couldn’t let it go. She felt ignored, dismissed, and more than anything, determined.
At the time, Witte worked at Google and had access to some of the best insurance in the country. If I, an empowered patient, couldn’t navigate the U.S. health-care system, she thought, what was it like for millions of other women?
In 2017, Witte founded Tia, a clinic and women’s health platform focused on primary care, preventative health, gynecology, and mental health. With seven clinics across New York, California, and Arizona, Tia hopes to establish better doctor-patient relationships. That means training staff in empathic care and permitting more time spent with physicians. “You can’t effectively diagnose and treat women if you don’t listen to them,” says Witte.
Last fall, Tia launched a head-turning campaign in which patients shared their own medical gaslighting stories. Called “Health Care That Hears You,” it included a humorous video demonstrating just how absurd it would be, for example, if you ventured to the Apple Genius bar with a broken iPhone, only to be told, “Maybe the problem is in your head.” Oh, and that appointment will cost $150.
Tia is part of a bigger ecosystem attempting to remedy the many ways women feel disappointed with modern medicine, be it for underestimating their pain or the lack of treatments for chronic conditions, which affect more women than men. A new generation of scientists, health professionals, and entrepreneurs is servicing their own—and they’re making an impact.
Taking matters into their own hands
A flush of innovative startups, apps, and initiatives are not only elevating women’s voices but helping progress women’s health.
Kimberly Seals Allers is a former Essence editor who was inspired to advocate for maternal health after she felt her C-section was both rushed and unnecessary. In 2021, Seals Allers launched Irth (i.e., “birth” but without the “b” for bias), a digital platform for Black women to share ratings of local hospitals, physicians, and pediatricians.
The Yelp-like app offers a detailed survey for users to post both good and bad reviews; the latter of which are brought to hospitals to remedy subpar treatment. By collecting this data, Irth can approach a hospital with specific stats, such as 80 percent of patient reviews attest to women’s pain levels being dismissed. The goal is to present the medical system with quantitative numbers and qualitative details, then suggest concrete solutions to address bias and offer hospital improvement plans. And it’s a vital issue: Black women are two to three times more likely to die from pregnancy-related causes than white women in the U.S., reports the CDC.
Seals Allers notes that anti-bias training, in which hospitals implement educational initiatives to increase awareness of bias and its impact, has become a profitable industry. “[But] nobody ever checked to see whether it’s actually improving the lived experience of care for Black folks,” says Seals Allers, noting the need to track progress.
Currently, Irth has 18,000 users and boasts over 10,000 reviews representing 47 states. Seals Allers brings up the necessity of on-the-ground patient testimony in order to gauge quality of care, especially as it pertains to marginalized groups. “[Researchers] were always in maternity care, always talking about evidence-based models,” she says. “To which I’d respond, evidence based on whom?”
Piraye Yurttas Beim, PhD, is another patient-turned-entrepreneur. In her early 30s, she was diagnosed with diminished ovarian reserve and informed she would never have genetic offspring. “That’s a pretty devastating thing to be told…especially when you feel so blindsided by it,” she recalls. Dr. Beim also spent years experiencing constant chronic pain, only to feel negated by the medical system. “[My OB/GYN] would say, ‘Yeah, pain is part of the process.’”
Dr. Beim was ultimately diagnosed with endometriosis, a disorder that impacts between 10 to 15 percent of all women. On average, women experience a seven to nine-year delay in proper diagnosis.
As a young research scientist who specialized in women’s reproductive health and oncology, Dr. Beim felt compelled to take action. She wanted to empower women to be proactive about managing their health “and not have these surprises.”
In 2009, Dr. Beim founded Celmatix, a women’s health biotech company uniquely focused on ovarian biology, where she now serves as CEO. Celmatix builds large data sets to identify novel biological pathways for conditions such as PCOS, endometriosis, infertility, and life stages such as menopause. With substantial data, Celmatix can help identify druggable targets—and then develop new medications. Already, the company has partnered with pharmaceutical companies such as Evotec and Bayer.
Celmatix raised over $100 million. Women’s health is seeing more attention—and investor dollars. (See: the multi-billion-dollar femtech market.) There are now even funds specifically dedicated to this growing sector, such as SteelSky Ventures, which manages $73 million.
SteelSky Ventures launched its first fund in 2020 and has since invested in Lark, an AI platform for women’s chronic care management; Raydiant Oximetry, which helps improves the accuracy of fetal distress monitoring and reduce unnecessary emergency C-sections; and Twentyeight Health, a telemedicine platform specializing in women’s reproductive and sexual health needs and servicing those on Medicaid and who are uninsured.
Most investors have been and are male, which undoubtedly affects which companies get funded. That’s changing, according to SteelSky Ventures founding partner Maria Velissaris. “People weren’t talking about maternal health. They weren’t talking about postpartum depression. They weren’t talking about menopause in a way they are now,” says Velissaris.“The shift in the social conversation has helped catalyze visibility.”
Grassroots efforts can also empower women. Bethany Blake and Beth Anne Travis are two pelvic health physical therapists who post educational videos under the TikTok moniker @DontKegelChronicles. They have over 300,000 followers, many of them young women who suffer from stigmatized pelvic floor disorders like incontinence.
“We get a lot of messages from people [who say], ‘I told my doctor that I have pain during sex and they were like, ‘Yeah, that’s part of being a woman. Just drink some wine first,’” says Blake. “A lot of people are searching for help—and we want to help.”
Tackling the root issues
Many issues within medicine start well before women start rattling off symptoms in the doctor’s office—only to be met with shrugged shoulders.
It’s no longer a secret that women’s health has been underfunded and under-researched. The inclusion of women in clinical trials didn’t become part of Federal law until 1993. Paltry research is sometimes why physicians don’t have answers—there isn’t enough research about women’s autoimmune disorders, gynecological issues, and many more chronic conditions.
The gender research gap has had wide-ranging effects on misdiagnosis—and how drugs or devices adversely impact women. Less than 2 percent of pharma research goes into developing novel products for women’s health, even though women are more likely than men to use pharmaceutical drugs, says Dr. Beim.
Take menopause, a natural phenomenon. Just because it’s natural doesn’t negate the need for medical intervention (for some, not necessarily all women). As Dr. Beim notes, “dying in childbirth is also natural. But we decided that that wasn’t okay for women.” This past spring, Celmatix announced key milestones for drugs intended to help women going through menopause.
There has been encouraging progress in closing the gap across a wide range of sectors. Women are better represented in clinical trials. Period tracking apps like Clue are collaborating with research institutions to better understand menstrual health. And innovative apps like Phendo, which tracks endometriosis symptoms, crowd-source data collection for medical researchers.
Nonprofit organizations like the Society for Women’s Health Research (SWHR) support initiatives to improve NIH research funding, track research progress, and help establish new legislation to support women’s health needs. In 2021, the organization supported the Endometriosis CARE Act, a bill requiring the Department of Health and Human Services (HHS) to increase endometriosis awareness and research. A year later, they helped push a task force to advise the HHS on research gaps for safe and effective therapies for pregnant women and lactating women.
Although experts are optimistic about increased funding and research, they concede there’s a lot more work to do. Katie Schubert, president and CEO of SWHR, points to lagging research surrounding healthy aging issues like menopause and bone health. “We hear a lot about women of reproductive age…and then it sort of peters off into, ‘Well, you’re just fine until you hit Medicare age.’” To further push the needle, there’s plenty every woman can do.
“You’ve got to advocate,” says Marjorie Jenkins, MD, dean of the University of South Carolina School of Medicine Greenville. “If you think about women’s health across the decades, change occurred with grassroots efforts.”
Share your story: Schubert points to how women speaking up about postpartum depression helped overcome long-standing taboos. The more we have honest conversations about what we’re going through—with friends, on social media, and even with the press—the more we increase awareness.
Tell your doctor: Try as much as possible to discuss medical issues with your doctor. If you are nervous that you won’t be heard, consider bringing a friend or family member. Having a loved one by your side might make you feel more at ease, and they might also be able to step in if you feel dismissed.
Get politically active: Contact your local policymakers and lawmakers and put pressure on them to support women’s health initiatives. SWHR recommends getting involved with local organizations, joining support groups, and participating in clinical trials.
Blake, for one, sees a generation of women challenging the status quo. “We’re not just accepting things anymore,” says the physical therapist. “We’re really starting to question: Can this be better?”