If the Trump administration’s medical and research purge continues, say concerned experts, the United States could shift towards a time where being a woman or a child is classified as having a disability, and, consequently, where disability-focused research is further deprioritised and diluted – a bleak and chilling possibility.
In a perspective in the New England Journal of Medicine, Amanda Kallen, Shannon Whirledge, Kara Goldman and Joshua Johnson write that with the dismantling of a crucial federal research institute, the future of women’s health is being placed in grave jeopardy.
Sixty-four years ago, the story goes, Eunice Kennedy Shriver went sailing with her brother, then-President John F Kennedy, off the Massachusetts coast. During this trip, Shriver suggested to her brother that his wife Jacqueline’s recent pregnancy losses might have been caused by underlying medical issues.
Shriver, a compassionate humanitarian who pursued social reform and social justice, is often remembered as the founder of the Special Olympics and as a dedicated advocate for people with disabilities.
But she has another important legacy. Recognising the need for a greater focus on the health of women and children in the United States, she convinced the President to support the creation of a federal institute devoted to these areas.
Shriver’s vision lives on in the work of her namesake institution: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). But today, that vision is under threat. Actions by the Trump administration are risking the future of women’s health, a central focus of research funded by the NICHD.
The term “women’s health” refers not only to conditions that are specific to women, but also to health issues that disproportionately affect women or that affect women differently than they affect men. Established by Congress in 1962, the NICHD was the first National Institutes of Health (NIH) institute to focus on health throughout the lifespan, rather than on a specific condition.
The NICHD has funded thousands of studies on a wide range of topics, including Parkinson’s disease, preterm birth, prevention of medical errors in neonatal intensive care units, intimate partner violence, septic shock, cigarette smoking, postpartum depression, and safe infant sleep.
The benefits of this research haven’t been limited to women – they have extended to men, children, and families. For example, cardiovascular disease is the leading cause of death among men in the United States, and studying differences between men and women in risk factors and symptoms associated with cardiovascular disease has helped researchers develop targeted therapies for both groups.
Research on the ovary, which shows signs of ageing earlier in life than most other organs, has uncovered shared biologic pathways across organ systems and informed strategies for extending healthy lifespans for all people.
Hundreds of pregnant and postpartum women die each year in the United States: initiatives aimed at reducing maternal mortality have saved lives and promoted family stability and well-being.
Children born to mothers with pregnancy complications, such as pre-eclampsia or gestational diabetes, are at increased risk for future health problems, including high blood pressure and stroke; investments in improving health during pregnancy therefore represent a powerful tool for breaking intergenerational cycles of disease.
NICHD-funded research also has clear economic benefits. Women make up roughly half of the American workforce and often serve as unpaid caregivers for children and other family members, but health problems can restrict their ability to work and support their families.
Analysts from the McKinsey Health Institute have estimated that addressing the women’s health research gap that has persisted, despite the efforts of the NICHD and other organisations, could boost the global economy by up to $1trn over the next 15 years.
Research on women’s health has been deeply underfunded and overlooked: this was the case even before the current threats to funding.
Indeed, most of what we know about preventing, diagnosing, and treating disease among women comes from studies in men. As of 2015, more than 20 years after the NIH Revitalisation Act mandated that women be included in clinical trials, the majority of studies still did not report sex-specific results. Moreover, only 3% of the NIH’s total budget is allocated to the NICHD.
The consequences of these inequities are staggering. Women are significantly more likely than men to die after a heart attack, for example, in part because studies have typically focused on symptoms that are more common among men.
Women report significantly higher numbers of adverse drug reactions than men, and evidence suggests that women have more severe, frequent, and persistent symptoms associated with chronic pain conditions such as rheumatoid arthritis – not even counting conditions that occur almost exclusively in women, such as endometriosis.
To address these inequities, in 2024 the Biden administration launched the White House Initiative on Women’s Health Research and committed millions of dollars to related efforts.
Actions by the Trump administration, however, reflect a clear disregard for the health of women and threaten to dismantle the hard-won progress of Shriver and generations of other advocates.
In the name of “agency priorities”, government agencies are scouring funded grants and grant proposals for particular terms related to diversity, equity, and inclusion. “Women” and “female” are on this list; “men” is not.
Since the beginning of the year, about $2.5bn in NIH research funding has been rescinded, including funding for studies in many areas that affect women and families, such as breast and uterine cancers, obesity, preterm birth, maternal and child health, mental health and suicide, Alzheimer’s disease, and drinking-water contamination.
Research training programmes aimed at developing the next generation of investigators with expertise in women’s and children’s health have also been terminated.
Thousands of government websites providing information on various topics, including opioid addiction, vaccination during pregnancy, and contraception, have been stripped of critical content in recent months.
Content on some websites has been restored, but with a caveat stating: “This page does not reflect biological reality and therefore the Administration and this department reject it”, and much information remains missing. Mass layoffs are ongoing at the NIH.
Among those placed on administrative leave was NICHD director Dr Diana Bianchi, whose work has advanced the health of women and babies worldwide. Various teams at the Centres for Disease Control and Prevention, including those responsible for producing contraceptive guidelines and for tracking the safety of in vitro fertilisation, have also been gutted.
These actions follow the 2024 introduction of a congressional appropriations Bill that included a proposal to fold the NICHD into a newly formed Institute for Disability Related Research. Although that change wasn’t implemented at the time, recently leaked documents suggest these plans are in full swing.
The dismantling of the NICHD appears to be under way. The possibility that the United States is moving toward a future in which being a woman or a child is classified as having a disability – and, consequently, in which disability-focused research is further deprioritised and diluted – is chilling.
These cuts will cripple biomedical research supporting the health of women and children, and their effects will ripple far beyond laboratories, being felt in hospitals, clinics, and communities for generations to come.
Women, particularly low-income women, women of colour, and women from other historically marginalised communities, will be disproportionately harmed, but men and children will also suffer.
The consequences of ignoring the health of women are deadly. Undermining women’s health research is not a cost-saving strategy; but a reckless gamble with the health of all Americans – all in the name of fiscal efficiency and political expediency.
1 Kallen is from the Division of Reproductive Endocrinology and Infertility, University of Vermont Larner College of Medicine, Burlington.
2 Whirledge is from the Department of Obstetrics, Gynecology, and Reproductive Sciences, Yale University School of Medicine, New Haven.
3 Whirledge is from the Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, Chicago.
4 Joshua Johnson is from the Division of Reproductive Sciences, University of Colorado Anschutz School of Medicine, Denver.
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