Sheila Uria Veliz and Mehek Bapna are not related, at least not by blood, but they share something similar. Both young women had their teenage years upended by debilitating illnesses that took years to diagnose.
Veliz was only 14 years old when she began gaining weight uncontrollably and noticed thick, wiry hair growing from her face – two physical changes that became a source of embarrassment for the young high schooler. Finally, at the age of 23, Veliz was diagnosed with Polycystic Ovary Syndrome (PCOS), a common endocrine condition that causes hormonal imbalances in women of childbearing age and, if left untreated, runs the risk of ovarian cancer. Although PCOS is the most common hormonal condition among women, two out of 10 women globally remain undiagnosed, according to the National Institute of Health.
For Mahek Bapka, her illness had little to with her outward appearance. Instead, it took the form of a mysterious, immobilizing pain that ran through her joints and bones – a pain so extreme that she had to take leave from school in Minneapolis until the doctors diagnosed her illness. After years of suffering, she was finally diagnosed with Complex Regional Pain Syndrome (CRPS) by the Pediatric and Palliative Care clinic at Children’s Minnesota. CRPS is a rare auto-immune disorder best characterized by chronic pain and inflammation in various body parts including the arms, legs and joints. The auto-immune disorder is also three to four times more common in women than it is in men, according to a study by the American Family Physician.
As Veliz and Bapka grapple with illnesses that disproportionately affect women, the fact their cases were routinely dismissed by medical professionals is more than a marker of misogyny in American health. It has roots in the US Constitution, and adding the Equal Rights Amendment (ERA) would change all that. Naomi Young, a Policy Associate at the ERA Project at Columbia Law School, says that passing the ERA would legitimize the role women play in society and empower them to make decisions about their health. “It would give women a legal leg to stand on,” Young concludes. Unfortunately, a Senate filibuster is currently preventing it, even though the ERA has been ratified by the 38 required states. Yet a filibuster has never been applied to any amendments before, making the use of it in this case unconstitutional. “Think of the filibuster as an anti-democratic tool which prevents legislation from moving forward in the Senate,” Young asserts.
“It’s about sex equality in the Constitution,” adds Zakiya Thomas, President of the ERA Coalition. Since women’s health is not at the vanguard of the federal agenda, researchers argue that this has led to a gender health gap, which broadly relates to the lack of equity in health care between women and men. This results in limited access to healthcare, as well a long history of comparatively minimal research conducted on women’s health conditions.
A report on the global gender health gap by the World Economic Forum highlights how the women’s health gap equates to a total of 75 million years of life lost due to poor health or premature death. “Closing the gap would give the 3.9 billion women in the world today an extra seven healthy days a year, or an average of 500 days over a lifetime,” according to the report.
Dr. Marianne J. Legato, a world-renowned physician, author, and pioneering force in the field of gender-specific medicine, has dedicated her career to studying the way different illnesses affect women versus men. “I, like all people, was taught that studying women was useless because their hormones fluctuate,” she recalls. “We only had a bikini view of women, that only their breasts and pelvis were of interest.”
Dr. Nina Stachenfeld, a research scientist at Yale University who studies hormonal imbalances among women, agrees that there is still very little funding available for studying women’s health, thereby contributing to the glaring gender health gap in the United States. “We have these things called funding lines,” Dr. Stachenfeld says, “So, you have to score in the top 3 or 4 percentiles to get funded .” A consequence of this, according to Dr. Stachenfeld, is that there is very little research being done on the ways PCOS can affect women if untreated. She argues that neglecting PCOS can lead to cardiovascular issues which can result in heart attacks, the leading cause of death among women globally, according to the Center for Disease Control and Prevention. Moreover, A study by the European Society of Cardiology found that, about 11.3% of women will die of a heart attack within 30 days of first being diagnosed, compared to 3.0% of men, thereby highlighting the dangers that can manifest by ignoring women’s health
Moreover, scientists also take issue with citing gender as a legitimate variable in clinical trials. A research study by JAMA Internal Medicine in July 2024 shows that only 29% of women were included as subjects in cardiovascular clinical trials, even though, according to the CDC, 310,661 American women have died from cardiac arrest in 2021. ERA advocates assert that inequality in women’s health will persist as long as the Equal Rights Amendment remains at the bottom of Congress’ agenda.
One step forward in addressing this problem is reflected in the recent executive order, “White House Initiative on Women’s Health Research,” in which President Joe Biden promised to direct key investments of $12 billion towards researching women’s health for Fiscal Year 2025. This includes more women in clinical trials, studying menopause and other illnesses that affect women, and allocating $200 million in funds towards NIH related projects that focus specifically on women’s health.
While scientists have expressed optimism for this initiative, arguing that it puts women’s health on the federal agenda, ERA policy leaders remain skeptical, contending that as long as the ERA is omitted from the Constitution, women’s health will remain vulnerable to change. Zakiya Thomas, President and CEO of the ERA Coalition, an organization that is building a foundation for all Americans to be treated equally under the law, cites the 2022 overturning of Roe v. Wade, a Supreme Court decision that legalized abortion in 1973, as an example of how women’s rights can be eliminated. “With the absence of the ERA, we are likely to see more decisions like that impact women’s lives and choices,” Thomas says.
Dr. Legato also emphasizes that the gender health gap will only be eliminated if sexist biases are put aside, thereby placing greater importance on how various illnesses affect women and men differently. “That would be a steppingstone in diagnosing women and treating them more effectively,” she says, “And it would also be a gift for men, if women were studied and how different medicines, treatments and illnesses specifically affect them. It would be transformative.”
About the Author: Eman Omar is a fellow in the Sy Syms Journalistic Excellence Program* at Women’s eNews, funded by the Sy Syms Foundation. The Sy Syms Journalistic Excellence Program at Women’s eNews fellowship supports editorial and development opportunities for editorial interns in the pursuit of journalistic excellence.
The Sy Syms Journalistic Excellence Program:
The Sy Syms Journalistic Excellence program at Women’s eNews was launched in 2014 with support from the Sy Syms Foundation. The fellowship provides support and development opportunities for editorial interns in the pursuit of journalistic excellence.
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