What It Would Actually Take to Fix Women’s Health Care in America

Bailey Staff was an active child, a competitive dancer, first degree black belt, and horserider. “I did everything under the sun,” she said—until she was 15 years old. She began to have constant pain in her right knee, and no matter what she did, it wouldn’t go away.

She went to her primary care doctor, hoping that he would have some answers. Instead, he told her that her BMI was low and she was anorexic, which is probably why she was in pain.

Staff was stunned. She wasn’t anorexic—she just happened to be thin. The pain continued to get worse, and Staff kept going back until her PCP referred her to another physician. He noticed some swelling in her knee but after an X-ray, dismissed her concerns.

Six months later, she began to experience a lack of feeling in her right leg. When she went back to the referred doctor, insisting something was wrong, he shrugged.

“I understand that teens are sometimes desperate for attention, so if that’s what this is, then there’s no way I can help you,” Staff recalled him saying. “Like I said, it’s in your head there’s nothing wrong.”

Staff knew something was wrong with her body; she just couldn’t get her doctor to believe her.

It took two more years of pain and suffering, of dismissed concerns and belittling, until someone took her pain seriously. After being referred to a rheumatologist, she was finally diagnosed with arthritis. She was 18 years old.

If women can’t even get their health care providers to take their concerns seriously, how can we possibly expect for women’s health care to be prioritized? And what would it take for women’s health, as broad as it is, to actually be good?

Women’s health, for both cisgender and transgender women, can’t be improved until women’s experiences, perspectives, and own individual autonomy aren’t just heard, but centered. Improving women’s health requires a seismic shift in women’s value and our accepted place in society. And to that, we need to first understand the problem.

Reclaiming Our Bodies from the Public Domain

Women’s bodies are routinely subject to public scrutiny and judgement in a way that men’s simply aren’t. Recent research published by the European Journal of Social Psychology reveals that people view women’s bodies through a moral lens more often than they do men’s bodies. Our bodies are frequently the site of moral judgement for any number of choices we make, from fatness to pregnancy to simple aging.

Holistically improving women’s health requires fundamentally eradicating patriarchal standards, and central to that is the regard of our bodies as public domain. Women’s bodies are subject to restrictive legislation and public debate that most men will never experience, while we are simultaneously denied the authority and autonomy that men are automatically afforded.

Those moral judgements are reflected by the State, which turns that scrutiny into policing of women’s bodies, both cis and trans.

In the wake of the Supreme Court’s tragic Dobbs decision, abortion bans have been enacted across the Southeast and Midwest, including total abortion bans in states like Texas and Alabama. To be pregnant in these states means putting your own life at risk—research shows that pregnant people in states with abortion bans are twice as likely to die during pregnancy or childbirth as those in states without bans. Anecdotally, we have already heard the horror stories of several pregnant women who have died as a result of their state’s abortion bans.

For trans women, scrutiny and surveillance are part and parcel of their lived experience. Even something as simple as using a restroom brings risks of legal action and violence. But their own health—the ability to access care to affirm their gender—is denied to many trans folks. Currently, 27 states ban or heavily restrict minors access to gender-affirming care. This is the ecosystem in which trans girls come of age—taught that their gender, their lived experience, their own health care needs, are a moral and legal violation.

How can any woman expect to be healthy when their bodies aren’t fundamentally their own? Instead, the U.S. needs a radical re-evaluation of women’s bodies as fundamentally their own, rather than fodder for public and state-based review and restriction.

Undoing the Normalization of Women’s Pain

Parijat Deshpande was lucky, all things considered, to be diagnosed early on with endometriosis, a chronic disease that can be incredibly painful, when she was 18 years old. It can take anywhere from four to 12 years for women to be properly diagnosed with this chronically misunderstood and underresearched diagnosis. But just because Deshpande had a diagnosis didn’t mean she knew what was going on.

“I had an OBGYN who was at least familiar with the concept who offered me birth control,” she recalls. “Beyond that, nothing else was offered. Nobody explained anything to me, nobody told me what it was about, what it’s doing to my body.”

For the next decade, Deshpande suffered until she finally decided to undergo a diagnostic laparoscopy to assess what was really going on in her body. Her newest OBGYN then put her on Lupron, which can relieve some endometriosis symptoms. Unfortunately, it didn’t for Deshpande. She was still in terrible pain, and so she went back to her doctor and told him that the medication wasn’t alleviating her pain.

As she recalls, he stared at her, shrugged, and said, “Well, endometriosis hurts.”

Deshpande knew that this physician wasn’t going to help her, not because he didn’t have the skills, but because he simply viewed her pain as normal.

What Deshpande experienced isn’t unique. According to a 2022 study by the Kaiser Family Foundation, 15 percent of women say that their health care provider didn’t believe them, and nearly a third of all women say that their health concerns were dismissed by their health care provider. Jackie Piasta, a doctor of nursing practice who is a nationally recognized leader in women’s and gendered health care, believes this is a culturally ingrained message.

“There is an assumption that [suffering] is part of women’s physiology,” she told DAME. Piasta notes that, even among fellow health care providers, there’s a latent acceptance that, “Oh, you’re supposed to have heavy periods… oh, you’re supposed to be tired… oh, pregnancy is not an illness, just get through the discomfort of it and continue to do everything that you were doing. We’ve definitely normalized female suffering.”

Fixing a Medical Ecosystem that Denies Women’s Lived Experiences

While women’s pain might be normalized in health care, our lived experiences are not. The medical ecosystem is built around cis men’s bodies and health care realities, and it’s not an accident—it’s institutional.

Until 1993, women were typically excluded from clinical trials. Yet it wasn’t until 2016 that the National Institutes of Health (NIH) started requiring researchers with NIH funding to collect and analyze data on biological sex differences in preclinical research.

The pipeline of funding to research to published science isn’t meant to accommodate women’s health. Take pain, for example. The normalization of her endometriosis pain isn’t unique to Parijat Deshpande—it’s systemic. Institutionally, “we need to really break down data on disparities between women and men in terms of pain control and really spread the correct information,” Dr. Amani Jambhekar, MD, a breast and melanoma surgical oncologist, told DAME.

But without the funding, women’s health research will continue to languish. A 2021 study showed that NIH funding for diseases favoring cis men is nearly twice as high as those favoring cis women. This institutionalized sexism has left a tragic gap in understanding of women’s health experiences.

“If we don’t fund the research, we can’t expect to understand how diseases and how conditions are presenting,” Piasta explained. “If we don’t fully understand the nuances of how conditions affect women, then we have to fund it. And in order to have scientists be able to work on this, we have to have funding. In order for doctors to pay attention to it we need these studies being published.”

Simply obtaining equity in funding seems a long way off, but that still won’t make up for the difference of a century-plus of medical research focused on cis men’s bodies. “We need an overcorrection in terms of funds,” Jambhekar said. And of course, women aren’t a monolith. Black women are three times more likely to die from pregnancy and childbirth than white women. Trans women experience higher morbidity than cis women. To truly eradicate the funding and research disparity, the unique health risks and experiences of all women, especially marginalized women, must be prioritized.

What Would Prioritizing Women’s Health Look Like?

It would be naive to think that women’s holistic health will be significantly improved under the Trump administration, which has shown itself to not only be hostile to women but to science in general. This kind of broad structural and cultural change will require decades, and some of that work will be undoing the damage that this administration has wrought. This is a marathon, and knowing the steps ahead will help us advance women’s health if/when the U.S. pries itself out from this autocratic nightmare.

Systemic change is essential. Ensuring that everyone is provided universal, accessible health care is the first step. In a country where at least 26 million people lack health insurance, this is a fundamental right, and one that certainly won’t happen under this administration. But expanding access will go a long way to improving health more broadly. Requiring health insurance companies to cover women’s unique health care needs, like contraception and abortion care for cis women, and gender-affirming care for all women, will also help alleviate the disparities.

It’s beyond health care, though. We need a holistic social fabric that protects and supports women’s lives. Scandinavian countries, in particular, are an example of societies that prioritize women’s health and needs. They have universal, subsidized health care, higher rates of gender equality, and robust social safety nets that reduce chronic stress and prioritize preventive care. They also have generous parental leave and affordable childcare policies that make women’s lives easier and less stressful, which can improve health outcomes.

To make women’s health and lives a political priority requires more than a new administration, however. It requires a broad cultural shift that values women’s experiences, voices, and our authority. This kind of vast overhaul requires more progressive women in positions of political power, and a society that radically reshapes its relationship to our bodies and lives.

It may sound radical, but it’s not. It’s simply affirming the humanity of half the population. And that is worth the fight.