Now more than ever, data is at the center of engagement and decision making. Healthcare and life sciences are no exception: data is central to discussions about public health and is core to enabling continued scientific advancement. The accelerated digitalization of healthcare during the pandemic has only expanded the amount of health-related data available—and cemented the key role that it plays in care delivery, disease prediction and diagnosis, biopharma and medtech innovation, and patient outcomes.
Despite the exponential growth in data generated across the healthcare ecosystem, notable gaps remain. One such area is women’s health, in which gaps span the entire data value chain—from defining women’s health (pre–data generation) to diagnosing (data generation) to tracking at the national level (data collection) to translating data into insights at the global level through epidemiological studies (data analysis). These data disparities ultimately influence health outcomes for women globally by creating blind spots in the insights that drive research design, investment decisions, and pipeline priorities. Certain subsets of women, such as those of different backgrounds, sexual orientations, and gender identities, are more vulnerable to the gaps and negative effects of these blind spots. Furthermore, insufficient availability and analysis of women-specific health data undermine advancements in disease-state understanding and limit asset discovery opportunities across medical conditions with meaningful unmet need.
This article highlights these disparities and explores options to remedy them.
Understanding the data value chain
Health-related data has numerous sources and is analyzed for different applications. This article explores examples of data gaps in women’s health at key moments across the health data value chain (Exhibit 1).
The following sections examine these examples in greater detail.
Pre–data generation: Defining women’s health
Good data sets begin with good definitions. Without clear definitions, the metrics to track and the conclusions to draw remain murky. However, at present there is no one definition of “women’s health.”
Historically, women’s health was largely defined as “reproductive health.” More recently, academics and clinicians have used a more expansive lens, recognizing that sex is a significant factor in the development and progression of many diseases. The National Academy on Women’s Health Medical Education defines women’s health as “devoted to facilitating the preservation and wellness of and prevention of illness in women and includes screening, diagnosis and management of conditions that are unique in women, are more common in women, are more serious in women, and have manifestations, risk factors or interventions that are different in women.”
For the purposes of this analysis, we define “women’s health” as encompassing both female-specific conditions, including those tied to female reproduction or female biology, and general health conditions that may affect women differently, such as cardiovascular diseases, or disproportionately, such as autoimmune diseases (Exhibit 2). It is crucial to understand sex-driven differences, as today’s care models often ignore those differences, resulting in health outcomes that can vary by sex (often to women’s disadvantage).
Data generation: Documenting women’s diagnoses in claims data
Insurance claims data—particularly in the United States—provides critical insight into the nature of health conditions and how they are treated. These data sets have inherent limitations, as their primary use for physicians is for billing purposes. However, this data is high quality and widely used, and thus the analysis for this article uses diagnosis codes on claims as a proxy for overall diagnosis rates.
According to US claims data from January 2019 through August 2022, the prevalence of women’s health conditions (estimated by epidemiological data sources) is roughly five times that of their documented diagnoses. In other words, for every one woman diagnosed with a women’s health condition, roughly four go undiagnosed. In comparison, the difference between epidemiological prevalence and documented diagnoses for men’s health conditions narrows to roughly 1.5 times (Exhibit 3).
While this disconnection between prevalence and diagnosis indicates an inconsistency in women’s health data across various sources, such sex-based differences may also reflect structural drivers, such as biases in care delivery. Implicit biases, defined as “attitudes and beliefs about race, ethnicity, age, ability, gender, or other characteristics that operate outside our conscious awareness and can be measured only indirectly,” have been found to be associated with “diagnostic uncertainty.” This phenomenon is corroborated by surveyed patients: 20 percent of women say a healthcare provider has ignored or dismissed their symptoms, compared with 14 percent of men.
Furthermore, we found that the sex of the diagnosing physician appears to be correlated with the likelihood of being diagnosed with a condition. In other words, in the claims data we analyzed, women appear to be more likely to be diagnosed with a female-specific condition, including menopause, polycystic ovary syndrome (PCOS), and endometriosis, if their physician is a woman. In our analysis of claims data, women represent approximately 40 percent of primary care physicians (PCPs) but nearly 50 percent of PCPs documenting diagnoses of these key women’s health conditions (Exhibit 4).
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.” Given that claims data informs life sciences investment decisions, “blind spots” in these data sets may contribute to a perception of less unmet need and less need for continued innovation.
These biases in care delivery are also likely reinforced during medical training. Out of 112 internal-medicine residency programs reviewed in a 2016 study, approximately 25 percent did not include menopause in the core curriculum, 30 percent did not include contraception, nearly 40 percent did not include PCOS, and more than 70 percent did not include infertility. These educational gaps are present even in programs dedicated to women’s health: a survey of US obstetrics and gynecology residents found that fewer than two in ten receive formal training in menopause medicine, but seven in ten would like to receive it.
The rate of underdiagnosis for women is more striking in light of data that shows that women are, on average, more likely to seek out care. A 2013 Kaiser survey found that 68 percent of men and 81 percent of women identified a clinician they see for routine care, and women were more likely than men to have seen a provider in the past two years (91 percent versus 75 percent).
Data collection: Reporting sex-disaggregated health data at the national level
Globally, the quality and quantity of women’s health data collection is uneven. The World Bank tracks country-level reporting rates of gender-specific healthcare indicators and finds significant gaps. For example, in 2020, less than 10 percent of countries reported data related to female access to contraception. This lack of visibility undermines the ability to understand drivers of maternal and child health, maternal mortality, and sexually transmitted infections (STIs) such as HIV/AIDS. And while data availability related to contraceptive use has improved, many countries still only provide data for married women. Less than 5 percent of countries reported 2020 data on menstrual material usage, which is a critical indicator of public health, gender equity, and human rights.
The availability of sex-specific health data also differs by country. During the COVID-19 pandemic, for instance, 76 percent of high-income countries reported COVID-19 case data by sex, compared with 37 percent of low-income countries. Sex-disaggregated data provides important insights into the biological mechanisms and socioeconomic risk factors that drive disease prevention and may translate to the development of more effective biopharma (and other) interventions by sex. Without it, the picture of global women’s health remains incomplete, particularly in lower-income countries.
Data analysis: Improving the metrics of epidemiological studies
In addition to data published by individual nations, the global burden of disease (GBD) is often used by clinicians, payers, researchers, analysts, and policy makers to understand the evolving global healthcare landscape. The GBD is the world’s most comprehensive observational epidemiological study, spanning 204 countries, 369 diseases and injuries, and 87 risk factors.
However, traditional metrics tracked in the GBD may not capture the full scale of need in women’s health. Using the GBD tool of the Institute for Health Metrics and Evaluation (IHME), we investigated the prevalence and burden of disease associated with select women’s health conditions (Exhibit 5). Of the conditions defined in this analysis, nearly 60 percent of prevalence data was attributed to female-specific diseases such as maternal health, contraception, and menopause. However, these same female-specific conditions represent less than 25 percent of disability-adjusted life years associated with women’s health conditions. In other words, traditional health metrics do not accurately reflect the widespread suffering associated with female-specific conditions.
A delta between prevalence and disability-adjusted life years is not surprising in itself. However, the low disability-adjusted life years associated with female-specific conditions (some of which, such as menopause, are not tracked at all in the GBD) appear to meaningfully understate the disruption and suffering associated with female-specific conditions. For example:
Menopause. Approximately 80 percent of women indicate that menopause interferes with their lives, and roughly one-third of these women also experience depression. Furthermore, with an estimated $810 billion in healthcare spending and productivity losses, menopause places a significant economic burden on the global economy.
Infertility. About 40 percent of women with infertility are reported to experience depression, and another 35 percent are reported to experience anxiety. These rates are an estimated 1.5 to 2.0 times higher in low- and middle-income countries than in high-income countries.
Endometriosis. Women with endometriosis have about three times higher healthcare costs on average. The time to diagnosis is estimated to be more than seven years, with an even more pronounced delay for Black women. Furthermore, approximately half of women with endometriosis reported earning less money as a result of the impact of endometriosis symptoms.
Dysmenorrhea. Period pain can disrupt women’s lives, with about 40 percent of young women reporting negative effects on classroom performance and about 20 percent reporting school absences due to pain. This impact is more pronounced in low- and middle-income countries.
Steps to close the data gaps in women’s health
Data is foundational to our understanding of disease states and is a crucial catalyst for continued life-sciences innovation. A 2023 report from the Enterprise Strategy Group and Splunk found that leaders in key data-maturity metrics also excelled in product innovation; these leaders report a higher number of product launches per year and a higher share of revenue accounted for by new innovations.
In women’s health, data gaps coincide with lower rates of clinical development focused on women’s health: excluding oncology, just 1 percent of biopharma pipeline assets and 2 percent of medtech novel approvals are directed at addressing women’s health conditions. (Including oncology, the rates increase to 5 and 4 percent, respectively.) Without data to accurately document the extent and nature of conditions, there is a limited fact base to fuel innovation—in women’s health specifically and in life sciences overall. But the opportunities to close gaps are plentiful and represent exciting opportunities for industry participants with a stake in improving women’s health outcomes.
Acknowledge the importance of sex in the definition and treatment of disease. The data gap is substantial and will take many hands and substantial effort to bridge. Today’s clinical trials, diagnoses, and treatment plans are built on existing data sets, only some of which include thorough analysis of robust sex-disaggregated data. Fortunately, working to close the data gap in women’s health could bring forth opportunities throughout the data value chain for life-sciences organizations, providers, payers, academics, and investors alike. The starting point is building a widely acknowledged definition of women’s health that includes all relevant conditions—not just those related to reproductive health—and highlights the biological relevance of sex to health outcomes.
Reinforce incentives at every step of the women’s health data value chain. At the regional and national levels, clinicians, academics, and researchers could benefit from updated guidance on the impact of sex-based differences on clinical outcomes, which demographic data to collect, and mechanisms for the collection of women’s health data. Improving visibility into women’s unmet medical needs will also require new mechanisms, incentives, and infrastructure to facilitate the generation of sex-disaggregated data. Some changes, such as those enhancing the understanding of sex-based differences in clinical outcomes, could have a substantial impact by creating a stronger foundation for women’s health data collection and analysis. Incumbent health and life sciences companies could also take the lead in working with companies that have unanalyzed sex-disaggregated data.
Improve the generation and use of data in care delivery. Clinician training in sex-specific biology and the implicit biases we know about today, with an emphasis on narrowing the gap between the prevalence of its condition and the volume of diagnoses, could help to improve health outcomes for women and critical sources of data generation. Once an expanded set of sex-disaggregated data is collected and assessed, that data can also guide future training on sex-based differences as data relates to healthcare research, clinical trials, pharmaceutical development, treatment, and more. Organizations that use clinical decision support systems to assist in clinical training may consider how a more robust set of sex-disaggregated data could improve models. The goal is to equip everyone—from researchers to providers to payers—with comprehensive training and tools built on best-in-class data practices.
Fund new ventures related to women’s health data. Investors could also seek out opportunities to fund new ventures focused on generating women’s health data and understanding the impact of sex-driven differences on health outcomes. The successful models that led to the proliferation of precision medicine in other therapeutic areas, such as oncology-focused electronic medical records companies, could guide these new ventures. Investors, entrepreneurs, and established life-sciences incumbents each have a role to play in investing in this white space.
Rethink traditional epidemiological metrics. Finally, stakeholders can consider how health metrics and studies are used, as well as the implications of those choices. Both key health outcome metrics and population-level analyses (for example, global epidemiological studies) should aim to accurately reflect the patient experience of different subpopulations. Revisiting and expanding these metrics could be a joint effort among governments, academics, clinicians, and public-health experts.
Our collective understanding of disease burden drives not only health outcomes but also investment decisions—and yet that understanding does not benefit from a comprehensive data set on women. The gaps are many, and women of different demographics feel the effects to varying degrees—but a new commitment to raising the bar in women’s health data could unlock the next generation of life-sciences innovations and care delivery for women globally. Moreover, taking care of women is taking care of communities. Everyone will benefit from a world with a comprehensive definition of women’s health, diagnosis rates more in line with condition prevalence, nationally reported sex-disaggregated data, and global epidemiological studies that consider the full breadth of women’s health experiences. The future of innovation in women’s health is only as strong as the data value chain that supports it. It’s time to close these gaps.
A year after moving to Bridge City, Texas, 8-year-old Samuel Kulovitz thought his life couldn’t get any worse. He had made no friends in the swampy oil refinery town and spent most of his time in his family’s mobile home. He missed Florida and playing on the beach there with other children.
But life did get worse. He hit puberty. For Kulovitz, who was assigned female at birth, “growing into being a young woman horrified me,” he said. “I kept crying and crying, and I didn’t know why I didn’t like it.”
Then, at age 11, Kulovitz started venturing onto social media. There, he came across a cosplayer on Tumblr who said he realized he was a transgender boy from the euphoria he felt while dressed as the hero of an online comic. Kulovitz was transfixed. “I kept asking myself, ‘Why do you want to look like him?’” he told Reuters. In the online community where Kulovitz spent more and more time, he adopted the pronouns “he” and “him,” and he liked it.
When his mother learned of his transgender identity, she was supportive and enrolled him in therapy. He was diagnosed at age 12 with gender dysphoria, the distress that comes from identifying as a gender different from the one assigned at birth.
Two and a half years later, Kulovitz started on the hormone testosterone. He was thrilled as he grew facial and chest hair, his voice dropped, and his menstrual periods stopped.
Still, his breasts were a constant source of distress, and his body ached from wearing a chest binder. “I always thought, ‘I wish I could get rid of them,’ ” Kulovitz said.
One day during his junior year of high school, Kulovitz, then 16, was scrolling on his phone when the TikTok account of a Miami surgeon who offered to “yeet the teets” of young transgender people popped up. In videos with hip-hop music playing in the background, Dr Sidhbh Gallagher provided detailed information about top surgery to remove or modify breasts and displayed photos of her satisfied gender-diverse patients, most of them young people, with shirts off to show the results of the doctor’s work. “Come to Miami to see me and the rest of the De Titty Committee,” she said in one of the videos.
Six months later, in June 2021, Kulovitz was in Miami with his mother, who gave consent for her son’s surgery and paid $10,000 out of pocket for it. He also had the letters of support Gallagher required from his therapist and doctor. When Kulovitz woke up after the procedure, “I felt euphoric,” he said. “I finally felt right in my body.”
A question of influence
Thousands of children who, like Kulovitz, were assigned female at birth have sought gender-affirming care in recent years. And for reasons not well-understood, they significantly outnumber those assigned male at birth who seek treatment.
As Reuters reported in October, a growing number of the children receiving care at the 100-plus gender clinics across the United States are opting for medical interventions – puberty-blocking drugs, hormones and, less often, surgery. And they are doing so even though strong scientific evidence of the long-term safety and efficacy of these treatments for children is scant.
That has led to a split among gender-care specialists: those who urge caution to ensure that only adolescents deemed well-suited to treatment after thorough evaluation receive it, and those who believe that delays in treatment unnecessarily prolong a child’s distress and put them at risk of self-harm.
The outsized proportion of adolescents seeking treatment to transition from female to male has sparked parallel concerns. Professionals in the gender-care community agree that treatment of all transgender children should be supportive and affirming. The question, for some, is whether peer groups and online media may be influencing some of these patients to pursue medical transition, with potentially irreversible side effects, at a time in their lives when their identities are often in flux.
Corey Basch, a professor of public health at William Paterson University in New Jersey who researches health communication and teens’ use of social media, said she fears that some adolescents are susceptible to making faulty self-diagnoses without adequate input from medical professionals. “Teens are so incredibly vulnerable to information overload and being pushed in one direction,” Basch said. “They could be lacking the analytical skills to question who is giving this advice and if their advice is valid.”
Adolescents assigned female at birth initiate transgender care 2.5 to 7.1 times more frequently than those assigned male at birth, according to the World Professional Association for Transgender Health (WPATH), a 4,000-member organization of medical, legal, academic and other professionals. Several clinics in the United States told Reuters that among their patients, the ratio was nearly 2-to-1, and similar phenomena have been documented in Europe, Canada and Australia.
Not all of these patients receive medical treatment. Their gender-affirming care may entail adopting a name and pronouns aligned with their gender identity. It may include counseling and therapy. But an increasing number are opting to take hormones and have top surgery.
In October, researchers at Vanderbilt University School of Medicine published a paper showing a 389{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} increase in gender-affirming chest surgeries performed nationally from 2016 to 2019 on patients under age 18. The total of 1,130 procedures during the period, nearly all of them for chest masculinization, represents a weighted estimate based on records from more than 2,000 U.S. medical facilities. Likewise, at least 776 chest masculinization surgeries were performed on patients ages 13 to 17 with a gender dysphoria diagnosis over the past three years, according to U.S. insurance claims analyzed for Reuters by health technology company Komodo Health Inc. This is probably an undercount because it does not include procedures paid for out of pocket.
The predominance of patients assigned female at birth is a reversal from the past. For years, when very few minors sought gender care, those assigned male at birth accounted for the majority. But about 15 years ago, that began to change as care became more accessible and the overall number of patients started climbing, according to studies and interviews with gender-care specialists.
For example, at Amsterdam University Medical Center’s gender clinic, a pioneer in adolescent gender care, the proportions flipped. From 1989 to 2005, 59{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} of its adolescent patients were assigned male at birth, the Dutch clinic reported in a 2015 study published in the Journal of Sexual Medicine. Since 2016, about 75{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} of the clinic’s patients have been youths who were assigned female at birth.
A diversity of identities
Advocates of transgender rights and clinicians who treat adolescents see nothing out of the ordinary in the trend. While transgender children face significant prejudice and threats of violence, they say, increasing social acceptance of transgender identity has encouraged more children to seek treatment. At the same time, this reasoning goes, society is generally less accepting of what it deems an effeminate boy than of a masculine girl, and the greater stigma that those assigned male at birth face may make them less likely to pursue treatment, reducing their share of the patient population.
These children may not necessarily identify as transgender, but more broadly as gender diverse. A growing list of terms reflects this diversity of gender identities: agender, nonbinary, gender fluid, polygender, demiboy and demigirl.
“Folks may feel freer and safer to express and take on a more diverse identity because the social conversation has been put out there.”
“There’s been an explosion in the gender-expansive model,” said Dr Michelle Forcier, a professor of pediatrics at Brown University’s Alpert Medical School who has specialized in the care of transgender and gender-diverse patients. “Folks may feel freer and safer to express and take on a more diverse identity because the social conversation has been put out there.” For these patients, she said, “the moral and ethical thing to do is to give them a list of options that might help them achieve their gender goals.”
But other gender-care providers and some parents are skeptical. In interviews with Reuters, they expressed worry that some adolescents assigned female at birth may be dealing with significant mental health issues in addition to questions about their gender identity, or may be seeking to transition as a refuge in a culture of internalized misogyny, body hatred and early sexualization of girls.
“Girls have a harder time with the physical and emotional changes that come with the onset of puberty,” said Dr Erica Anderson, a clinical psychologist, transgender woman and former board member of WPATH. “And I think there is an element of truth that males have it better in many quarters of society than females.”
For all children, experts say, adolescence is a search for identity, when they try on various personas, appearances and interests and move beyond family to seek validation from peers. Anderson, who treats transgender and gender-questioning youth in her private practice in Berkeley, California, said she’s concerned that medically transitioning has become the default choice for too many girls who are uncomfortable with their bodies, struggling to fit in socially or dealing with mental health issues.
“Kids do try things on and not everything sticks. They experiment,” she said. “I do not believe that we have an obligation to accept at face value everything a young person says to us.”
Anderson and other clinicians say the danger is that adolescents receive medical treatment, do not experience relief from their distress, and perhaps end up regretting the irreversible results of hormone therapy and top surgery. Treatment guidelines issued by WPATH and other medical groups rely heavily on research from the Netherlands that studied children who exhibited persistent gender dysphoria from an early age and who had no serious psychiatric issues before receiving puberty blockers, hormones or surgery.
The good and the bad
The role of peer influence and social media looms large in discussions about the gender imbalance among transgender youth patients.
In recent years, young transgender people have enthusiastically embraced social media to tell their stories. On platforms such as TikTok and Instagram, young people receiving gender treatment regularly share with followers – sometimes numbering in the tens of thousands – details about taking medications and having surgery. Their presence is augmented by doctors who use social media to communicate directly with potential patients.
Many patients, like Kulovitz, and doctors who treat them say social media can be a source of helpful advice and information for minors questioning their gender identity and can reduce their isolation by connecting them to others with similar experiences.
But some prominent clinicians also say that along with those benefits, social media may lead some youths to mistake mental health problems or uncertainty about their identity for gender dysphoria.
In its new Standards of Care, published in September, WPATH acknowledged for the first time that “social influence” may impact an adolescent’s gender identity. The organization recommends that youths undergo an in-depth evaluation in part so that clinicians “can discern between a person’s gender identity that is marked and sustained and an identity that might be socially influenced,” according to Dr Eli Coleman, director of the University of Minnesota Medical School’s Institute for Sexual and Gender Health who oversaw the update of WPATH’s guidelines.
Some patients may see others touting huge improvements in their quality of life after transitioning, and so they think, “‘I’m having these same problems, and transitioning to a different gender will help me feel better,’” said Dr Laura Edwards-Leeper, a clinical psychologist in Oregon who specializes in treating transgender children. She was a co-author of WPATH’s new Standards of Care for adolescents.
Parents of 40 gender-diverse children told Reuters they were concerned that their children came out only after they hit puberty, often at the same time as their friends and after their use of social media had increased. For many, their worries were compounded when clinicians swiftly affirmed their childrens’ transgender identities and recommended medical intervention without fully assessing whether other potential underlying causes of distress were present.
Kelly, a 43-year-old parent who asked that her full name not be used to protect her family’s privacy, told Reuters that her child was heavily into highly sexualized anime and transgender online forums when the 12-year-old started experimenting, seemingly overnight, with being a transgender boy. The child’s therapist encouraged medical intervention, Kelly said, but while Kelly supported social transition outside the home, she made it clear that her child would have to wait until she was 18 for hormones and top surgery.
After several years of living as a boy and using “he” and “him” pronouns, Kelly’s child, now 18, is back to using her female name, dressing in feminine clothing and using “she” and “her” pronouns. “We would have lost our daughter if we had followed what the therapist was telling us to do,” the mother said.
No definitive research has established a link between social media use and gender identity among youths. Still, gender-care experts say the possible influence of social media and peer groups highlights the necessity of comprehensive assessments before referring patients for medical treatment. The problem, they say, is that some clinics, facing a flood of patients, lack the mental health staff and patience needed to do such evaluations to determine whether a patient has persistent gender dysphoria and that medical treatment is in their best interests.
“These evaluations are more important than ever,” Edwards-Leeper said, because “many of these adolescents are learning about gender dysphoria for the first time online or from friends.”
In Finland, which was early to embrace gender care for minors, Dr Riittakerttu Kaltiala, chief psychiatrist at the Tampere University Hospital Department of Adolescent Psychiatry, noticed a few years ago that the profile of patients seeking to medically transition was shifting. Many showed no signs of gender dysphoria until puberty, were mostly assigned female at birth – reaching 90{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} of patients by 2017 – and often belonged to similar social circles in school and online. In some cases, she said, patients described personal experiences with exactly the same details.
That these teens were possibly emulating each other didn’t bother Kaltiala. “That is perfectly normal” in adolescence, she told Reuters. What did bother her was that many of the teens had concluded quickly that they were transgender and viewed their identity as fixed, attempting to cut short the process of identity formation that typically lasts years.
She also encountered a handful of young patients who regretted medically transitioning. “They have said, ‘I was so sure that you could not have changed my mind. I was so confident that this is the way, but nevertheless I think it was a mistake,’ ” Kaltiala said. “I take that really seriously. It’s a horrible situation for everybody.”
Her concerns prompted a team of mental health professionals running Finland’s two adolescent gender clinics to ask the country’s national healthcare council to evaluate the evidence supporting youth gender care. In their request, they told the board that clinicians were under growing pressure to make increasingly complex medical decisions on treating transgender youths without enough scientific or expert guidance.
In 2020, the council concluded that “in light of available evidence, gender reassignment of minors is still an experimental practice.” Now, psychosocial support is the first-line treatment for most adolescents with gender dysphoria. Medical interventions are possible in Finland on a case-by-case basis if, after psychotherapy, the patient’s gender-related anxiety persists, personality development appears stable and no severe mental health disorders would complicate treatment.
Resisting the ‘fad’ narrative
Transgender advocates and some doctors reject the idea that social media and peer influence may play a role in the predominance of female-to-male transitions among adolescent patients. They say that it feeds a dangerous transphobic myth, and that opponents of gender care weaponize this false “fad” narrative to limit children’s access to treatment.
“One of the false narratives is that young people are being lured in and directed somehow against their will to become transgender, which is not at all the case,” said Dr Dan Karasic, professor emeritus of psychiatry at the University of California San Francisco and lead author of the mental health chapter in WPATH’s new Standards of Care.
He said opponents of children’s gender care erroneously conflate young patients undergoing medical treatment for persistent, longstanding gender dysphoria with “somebody who has a text chat with someone and is left with some confusion about who they are.”
Prisha Mosley is one of several people who told Reuters that, in hindsight, they think the medical professionals who helped them transition should have evaluated them more thoroughly and advised against medical treatments they now regret.
Starting in her early teens, Mosley, who was assigned female at birth, struggled with anorexia, anxiety and depression. She attempted suicide by drowning, and a sexual assault added to her trauma.
Isolated and miserable, she sought friends online, where she met a group of people on Tumblr who told her that if she hated her body, felt suicidal and didn’t fit in with her gender, she was transgender. “I wanted to do the treatment that would fix that,” Mosley, now 24, told Reuters.
Mosley socially transitioned, adopting a male name and pronouns and coming out to her mother with a PowerPoint presentation.
But that, as well as therapy and the help of a specialist in pediatric eating disorders, did not ease her distress. In January 2015, she was hospitalized after cutting her wrist with a knife, her medical records from Cone Health in Greensboro, North Carolina, show.
Later that year, Mosley said, a therapist diagnosed her with gender dysphoria after a single visit. By July, Mosley began treatment with testosterone under the care of her doctor at Cone. The hormone immediately boosted her energy, and her appetite improved. But her depression and suicidal thoughts persisted.
Cone Health spokesperson Doug Allred would not comment on Mosley’s case specifically. He said the health system’s gender-affirming care is based on established guidelines and provided to patients who undergo psychological assessment and have parental consent. “An individual’s perspective about their gender-affirming care can sometimes change,” he said.
Mosley’s mother, Christine Bourgeois-Mosley, said that she struggled for years to accept Mosley’s identity, but she consented to gender treatment because of her child’s persistent suicidal thoughts. Mosley’s therapist, Shana Gordon, and her physician at Cone, Dr Martha Perry, assured the family that it was the right thing to do, both Mosley and her mother said. Gordon and Perry declined to comment on Mosley’s care.
When Mosley turned 18, she had surgery to remove her breasts. Her mother objected to the surgery, but accompanied Mosley anyway. “What was I going to do, let her go by herself?” Bourgeois-Mosley said.
Mosley said the physical transition did not alleviate her depression; she continued to cut herself. Her mental health began to improve only after several years of behavioral therapy. At 22, she stopped taking testosterone and determined that she regretted transitioning.
“I decided that I didn’t want to be a woman before I had ever even experienced being a woman,” said Mosley, who is now studying psychology at a community college in Michigan. “Now I feel like I will never entirely know.”
Mosley suffers from painful vaginal atrophy, marked by dryness and inflammation of the vaginal walls, a common side effect of testosterone that she said she didn’t fully understand when her doctor warned her about it. She is undergoing laser treatments to remove the facial and body hair brought on by testosterone, and she hopes to be cleared for breast reconstruction.
Mosley said she wishes her doctors had focused more on her mental health instead of endorsing her desire to change her body. “I just took the cure that was handed to me,” she said, “and I ruined my life.”
The surgical route
The main components of medical treatment for transgender youths are puberty blockers, hormones and surgery. Clinicians say many adolescents seeking to transition show up after the onset of puberty, making puberty blockers impractical. Treatment for those assigned female at birth may start with testosterone. Over time, the hormone can cause male-pattern baldness, high blood pressure, an enlarged clitoris and the vaginal atrophy that plagues Mosley. The long-term effects on fertility are unclear.
Some of these young patients opt for surgery. When they do, it’s almost always top surgery. A common bottom surgery they would have – phalloplasty to create a penis – is expensive and has a high rate of complications. Many hospitals do not perform genital surgeries on patients under 18.
Top surgery, by comparison, is less complicated and less risky. Surgeons warn patients about scarring, loss of lactation, possible loss of sensation in the nipples, along with routine post-operative risks like slow wound healing. Prices typically range from $5,000 to $30,000 or more. Some insurers cover the procedure for gender dysphoria patients as young as 13.
Top surgery is a particular target for opponents of gender care, who object to allowing minors to undergo life-altering procedures at such a young age. Some children’s hospitals and doctors providing top surgery have reported being harassed and threatened online for treating adolescents.
Within the gender-care community, top surgery is considered a safe and effective way to alleviate a major source of anguish in transgender boys.
After receiving an “overwhelming number of violent threats” in August, Dr Scott Mosser of the Gender Confirmation Center in San Francisco announced he had paused accepting new adolescent patients for gender surgery. In a statement posted on his website, Mosser said: “We are profoundly disturbed by the extent to which misinformation, prejudice and fanaticism threaten trans, nonbinary and gender expansive people’s access to life-saving care.”
Within the gender-care community, top surgery is considered a safe and effective way to alleviate a major source of anguish in transgender boys. WPATH’s new guidelines say that chest dysphoria is associated with higher levels of anxiety and depression in patients assigned female at birth, and that testosterone does little to alleviate this distress. Without specifying a recommended minimum age, the organization says top surgery “can be considered in minors when clinically and developmentally appropriate.”
Floor Hurlbert was a middle-school student in Connecticut when, around the start of puberty, they began to suffer from severe chest dysphoria. Pained by their appearance, Hurlbert avoided taking showers and removed a full-length mirror from their room. Wearing a chest binder was uncomfortable and didn’t ease their distress. “I knew people were looking at me and perceiving me in a way I didn’t like,” Hurlbert said.
Hurlbert wasn’t interested in taking testosterone. They only wanted top surgery, and they got it soon after turning 18. “It was like a huge source of my mental health issues were not there anymore,” said Hurlbert, now a 19-year-old college student. “I could feel happy about myself and how I looked.”
Research on long-term outcomes for patients who undergo top surgery as minors is limited. In its guidelines, WPATH cites two small studies published in recent years that it says “demonstrated good surgical outcomes, satisfaction with results, and minimal regret during the study monitoring period.” Both studies followed up with patients an average of about 1.5 years after surgery.
A menu of options
Amid the debate over whether social media is influencing adolescents to seek top surgeries, some surgeons are using online platforms to tap rising demand for the procedures.
Top Surgery Specialists of New York City and Los Angeles has Instagram accounts that feature photos of young people proudly displaying their scars after top surgery.
Dr Tony Mangubat, a Seattle plastic surgeon who has more than 200,000 followers on TikTok @TikDocTony, often tags his posts with the hashtag “#teetusdeletus.” In his videos, he answers questions like “What is the perfect age to have top surgery?” (“My youngest patient was 15,” Mangubat replied) and “Hey Doc, how old do I have to be to start T,” short for testosterone. (“You start T, really, when you’re ready,” Mangubat responded, and advised patients to talk to their doctors).
Top Surgery Specialists and Mangubat did not respond to requests for comment.
Gallagher, the doctor who performed Kulovitz’s top surgery, posts bare-chested selfies from her patients – who often refer to themselves as “Gallagher guys” – frolicking on sun-drenched beaches. She also posts images of parents standing in the lobby of her Miami office next to their children, who wear unbuttoned “nip-reveal shirts” that show their red incision scars. “Supportive moms are the best!” Gallagher writes in photo captions.
SHOWING RESULTS: Miami surgeon Sidhbh Gallagher posted on Instagram this photo of herself with Samuel Kulovitz and his mother, Tisha Kulovitz, after the surgeon performed Samuel’s top surgery.
Gallagher describes to her 273,000 TikTok followers the options she offers for “designer” chests. Top surgery can include torso “masculoplasty” to smooth out feminine curves. For the nonbinary, Gallagher can remove the nipples altogether: “No Nips, No problem,” as one post’s text display puts it. And for the gender fluid, she offers “non-flat” surgery, leaving enough breast tissue so that on some days patients can have a “perky breast” with cleavage and on other days they can bind their breasts.
TikTok did not respond to requests for comment. A spokesperson for Instagram parent Meta Platforms Inc said that doctors who post about medical procedures involving minors wouldn’t necessarily violate the platform’s rules, but that paying for ads directed at minors is prohibited.
Half a dozen of Gallagher’s patients who were minors when they got top surgery, including Kulovitz, told Reuters they were very pleased with the results. They also said they appreciated how Gallagher publicly champions their right to a body that aligns with their gender identity.
Gallagher’s marketing tactics have caught the attention of organizations critical of gender-affirming care for minors. In February, five of these groups, made up of parents, medical professionals and people who have detransitioned, filed a complaint with the Federal Trade Commission, asking the agency to investigate Gallagher over the way she communicates with young people on social media. The complaint alleges that Gallagher and her medical practice are “engaged in unfair, false and deceptive practices in the aggressive advertising and marketing to minors of their plastic surgery services, namely mastectomies of healthy female breasts, as proven safe, effective and medically necessary.” One of the groups’ members said she was alarmed when her child, who was following Gallagher on social media, told her about wanting surgery by the doctor.
REACHING OUT: Gallagher has 273,000 followers on TikTok, where she frequently posts information about top surgery and the various options she offers to young transgender people for “designer” chests.
Two lawyers filed a similar complaint earlier this year with the Florida Attorney General’s Office alleging that Gallagher is improperly marketing surgery to teens on TikTok and Instagram, in particular to “children with mental health disorders.”
In a statement to Reuters, Gallagher said that nine months after the FTC complaint was filed, “there is, to our knowledge, no investigation by the FTC” and that the “obvious aim of these opposing groups is to oppress, silence and attack gender-affirming care and those that provide it.” She added that the mission of her social media was to “amplify transgender voices, celebrate transgender lives and, most importantly, to provide education that empowers our patients to navigate the complex process of surgical transition.”
The FTC and the Florida attorney general’s office did not respond to requests for comment.
More generally, Florida is among several conservative-run states opposed to gender-affirming care for minors that have sought to limit access to treatment. In early November, two Florida medical boards approved draft rules to ban puberty blockers, hormones and gender-affirming surgeries for minors. Patients already in treatment and children enrolled in clinical trials could continue to receive care. The rules are scheduled to take effect in the coming weeks.
It’s not unusual for plastic surgeons to share information with prospective patients on social media. But some gender-care specialists say that using graphic patient photos and lighthearted videos aimed at minors online glosses over potential complications and life-altering consequences.
“It seems like they’re almost trying to recruit people based on really flashy videos that minimize the risks,” said Dr Marci Bowers, a transgender woman who is a gender surgeon and president of WPATH. “For those who are genuinely concerned that people are being swept in by this ‘social contagion,’ these kinds of videos are not helpful,” she said. “I wish we could police them, but I just don’t know of any good way to do that other than to appeal to good taste.”
Bowers said that she doesn’t advertise on social media and that WPATH’s ethics committee is examining how to discourage improper marketing practices.
‘A beautiful feeling’
When the then-7-year-old Samuel Kulovitz moved with his mother and stepfather to Bridge City from West Palm Beach, Florida, he found himself in a “sad and depressing” flood-prone Gulf Coast town with no sidewalks and few places to swim, often cloaked in the sulfurous emissions of ubiquitous oil refineries. The brainy child, who struggles with sensory and auditory processing issues, was quickly ostracized, a frequent target of teasing and bullying. Outside school, he spent his time in the family’s mobile home, reading, playing video games and hanging out with his mom.
The panic of puberty, a training bra and menstrual periods only worsened his isolation – until he started exploring social media. There, he said, he finally realized the main source of his unhappiness: He was transgender.
Inspired by the cosplayer he found on Tumblr, he walked to Walgreens one day, bought a gift card and ordered a chest binder online. “The first time I put it on, it was a beautiful feeling,” he said. “It was the most euphoric I had ever been in my life.”
He kept his newfound gender identity from his parents, fearful of how they would react. Then one day, while riding with his mother in her car, he passed out. Tisha Kulovitz rushed him to a local hospital, where doctors told her that her 12-year-old was malnourished from an eating disorder and had been binding his breasts.
At first, “I was completely blindsided,” Tisha said. “I think we initially even blamed the internet.”
But after she began doing her own online research on transgender children, she concluded it was important to support her child. She enrolled him in gender therapy, found him a psychiatrist to help treat his eating disorder, depression and sensory and auditory processing issues and took him to a transgender support group located out of town, driving him the 30 miles each way once a month. In the summer, he attended a gender-inclusive camp where everyone was encouraged to experiment with any identity they wanted. “My mom was my hero through all of this,” said Kulovitz. “I wouldn’t be alive without her.”
After a diagnosis of gender dysphoria and more than two years of therapy, Kulovitz went on testosterone at age 14. The masculinizing effects gave him a big confidence boost.
Kulovitz was still the only transgender student he knew of when, as a high-school freshman, he felt emboldened enough to start the school’s first LGBTQ club. At first, nobody came. But over time, the club had grown to include 30 students, half of whom identified as transgender, nonbinary or gender fluid. “I was like, ‘Wow so great you are here, I’m glad y’all feel comfortable,’ ” he said.
As a junior in high school, he discovered Dr Gallagher on social media. Two months later, for Valentine’s Day, his mother gave him a virtual consultation with the doctor, scheduled during his school lunch break. Gallagher “was super cool and affirming,” Kulovitz said. “She put all my anxieties to rest.”
His parents were on board. To pay for the procedure, his mother worked overtime at her job and chipped in earnings from her vintage-clothing store on Etsy. Kulovitz said that he is “super proud” of how the surgery made him feel. “If I hadn’t gotten it, I don’t think my mental health would be where it is,” he said.
Today, Kulovitz identifies as a transgender man who is gay. In August, he started college on a full scholarship in a small Texas town about a four-hour drive from Bridge City. The university doesn’t offer LGBTQ housing, so Kulovitz, who changed his gender marker to male on his birth certificate when he transitioned, shares a dorm room with a cisgender male football player.
He is pleased to be living in a community that includes more LGBTQ people, and has made fast friends with a cisgender young woman with whom he goes shopping for vintage clothes. For now, he has no interest in dating or pursuing a romantic relationship – and no interest in bottom surgery. “It’s an intense procedure, and at this point in time I don’t think it’s right for me,” he said.
He also has dialed back on social media after deciding he was spending too much time scrolling on his phone. “I hated how it made me feel,” he said. “It was like quitting a drug.”
Last January, on his 18th birthday, he deleted TikTok from his phone.
Do you have an experience with gender-affirming care to share as a patient, family member or medical provider? Share it with Reuters.
Youth in Transition
By Michelle Conlin, Robin Respaut and Chad Terhune
The health secretary, Steve Barclay, this morning unveiled his plan to deal with gender health and fitness inequality. A “landmark moment”, he referred to as it, “in improving the well being and wellbeing of women of all ages throughout the country”.
The proposition was unarguable. That the health care procedure was historically built for males, by guys, is evidenced all over the place, from the comparatively reduced everyday living expectancy between women of all ages in inadequate locations to the truth that girls, when they dwell longer, expend a quarter of their lives in inadequate health and fitness, in contrast with a fifth for adult men. The report was the final result of a 100,000-solid session, in which 84{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} of respondents said they experienced felt “ignored or not listened to” when searching for enable from the NHS.
Each and every suggestion in the report, nonetheless, was infinitely debatable – not the very least the laughable thought of a 10-yr technique on anything at all from a govt whose standard horizon is the fortnight it takes for a single disaster to segue into the subsequent.
Suggestions include things like an expanded women’s wellbeing area on the NHS web page a certification for mothers and fathers who working experience pregnancy reduction right before 24 weeks mandatory educating and evaluation on women’s health for all clinical college students and medical doctors, with sections on menopause, obstetrics and gynaecology 25 new cell breast-screening units improved obtain to contraception, IVF, maternity assistance and mental wellbeing services and a national exercise programme to assistance more mature gals construct muscle mass toughness.
I’d hardly ever dispute affected person testimony, or argue from added education for GPs and experts but if women are discovering their challenges minimised, misunderstood or undiagnosed when they initially search for help, I doubt which is mainly because their GP is a lot more cozy managing male clients. Feminine GPs have outnumbered male types for just about a 10 years it’s only not plausible that they discover gynaecology or fertility issues exotic.
Even in advance of the pandemic, in 2018, nearly half of GPs noted anxiety ranges so high they felt not able to cope at the very least at the time a week. Sixty per cent have been doing work extra several hours than they were being contracted, and 45{35112b74ca1a6bc4decb6697edde3f9edcc1b44915f2ccb9995df8df6b4364bc} have been sure that the practical experience was likely to deteriorate, which it duly did for the duration of Covid.
The exact troubles persist of an overstretched, underfunded provider, with the added stress of mountainous backlogs, spend stagnation and a perversely hostile media. I’m just running the odds below if there’s a suboptimal interaction amongst a GP and a patient, is that mainly because the GP is endemically sexist and desires equality coaching? Or is it because the two are below a phenomenal amount of serious strain?
Drilling into certain locations, these types of as IVF and sexual health and fitness, the exact same story is penned in a lot more element: funding constraints have just designed the companies even worse – slower, extra parsimonious and more unjust involving just one postcode and a further. No just one in psychological wellbeing would say that the rolling disaster was down to a failure to choose women of all ages critically nor would they say that gentlemen were staying dealt with with extra gravity or receiving any form of priority.
At a more elementary level, if overall health outcomes are worsening and deteriorating speedier in poorer parts – and they are – we have known for more than a ten years why this is. When you simply cannot satisfy your substance desires, the epidemiologist Michael Marmot has continuously demonstrated, that quantities to a “psycho-social assault” with a large range of actual physical and mental impacts. To say “women are much more likely to are living in poverty ladies are suffering extra sick health hence health and fitness providers are gender-biased” is the most basic syllogism. But like so substantially authorities by push release, it is strategic.
