{"id":5725,"date":"2026-07-03T15:40:00","date_gmt":"2026-07-03T19:40:00","guid":{"rendered":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/?p=5725"},"modified":"2026-07-07T12:16:01","modified_gmt":"2026-07-07T16:16:01","slug":"underfunded-but-not-ignored-womens-health-research","status":"publish","type":"post","link":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/underfunded-but-not-ignored-womens-health-research\/","title":{"rendered":"Women\u2019s Health Research &#8211; Underfunded? Ignored?"},"content":{"rendered":"<h3><em>The Pondering Professor Series<\/em><\/h3>\n<p class=\"my-2 [&amp;+p]:mt-4 [&amp;_strong:has(+br)]:inline-block [&amp;_strong:has(+br)]:align-top\">If you live with endometriosis, chronic pelvic pain or another gynecologic condition, or you are going through menopause, you\u2019ve probably heard some version of this lately: \u201cNo one is funding research on this.\u201d, \u201cIf this were a male reproductive disorder, we\u2019d know a lot more by now.\u201d, \u201cWomen\u2019s health is getting dismissed in practice.\u201d I am increasingly hearing and seeing frustration about funding for women\u2019s health topics, especially endometriosis, menopause, and pelvic pain\u2013related conditions, in media and in the meetings I attend. While much of that frustration is justified, I\u2019m cautiously hopeful about where things are headed. So I decided to dedicate this post to why I am optimistic and to some of the nuances that get lost in public conversations about funding. It\u2019s meant to look at the funding picture through the lens of someone who spends her days inside that system, trying to build better tools for conditions that have been overlooked for a long time.<\/p>\n<p><strong>The funding gap is real<\/strong><\/p>\n<p>The hard part is that the sense that women\u2019s health has been underfunded is not in your imagination. Endometriosis affects approximately one in ten people assigned female at birth, and likely more. It can cause severe pain, heavy bleeding, digestive and urinary symptoms, and significant impact on daily life. Yet multiple analyses have compared funding for endometriosis to funding for conditions with similar prevalence and impact\u2014such as diabetes or inflammatory bowel disease\u2014and concluded that endometriosis receives far fewer research dollars (1-3). At the broader level, women\u2019s health research has historically made up a smaller share of total federal research funding than its burden would suggest. Conditions that predominantly affect women, or present differently in women, often lag behind in dedicated studies, clinical trials, and large registries (4-8). Analyses of NIH data over the past decade indicate that, although total research grant dollars have grown, the share devoted to women\u2019s health research has remained low. More money overall does not automatically translate into better support for women\u2019s health. There are many reasons for this, but two patterns keep repeating:<\/p>\n<ul>\n<li><strong>Stigma and discomfort.<\/strong> Topics involving menstruation, pelvic pain, sexual health, and reproductive organs have been framed as \u201cprivate\u201d or \u201cembarrassing\u201d for decades. That makes them slower to enter mainstream research agendas than, say, cholesterol or lung cancer (5,8).<\/li>\n<li><strong>Data poverty.<\/strong> As we\u2019ve discussed in other Data Bytes posts, many gynecologic conditions are under\u2011documented in traditional records. If the data aren\u2019t there, it\u2019s easier for funders to overlook the true burden, and harder for advocates to point to numbers that demand investment (9-11).<\/li>\n<\/ul>\n<p>So when patients, clinicians, and advocates say \u201cwomen\u2019s health is underfunded,\u201d they\u2019re pointing to a real pattern.<\/p>\n<p><strong>Why funding matters beyond headlines<\/strong><\/p>\n<p>It\u2019s easy to talk about \u201cfunding\u201d in abstract terms. But funding decisions shape your daily life. More sustained funding for women\u2019s health means:<\/p>\n<ul>\n<li><strong>More basic science and clinical studies<\/strong> that try to understand what drives pain, bleeding, fatigue, and other symptoms\u2014and what treatments actually work.<\/li>\n<li><strong>More digital health and data science projects<\/strong> that can capture day\u2011to\u2011day experiences, not just what happens in the few minutes of a clinic visit (12,13).<\/li>\n<li><strong>More infrastructure:<\/strong> specialized clinics, multidisciplinary teams, and guidelines that take menstrual and pelvic pain seriously instead of treating them as an afterthought.<\/li>\n<\/ul>\n<p>In our lab, for example, funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) supports our CPP Tracker and d2prom studies, which focus on digital patient-reported outcome measures for chronic pelvic pain. That grant allows us to build and test measures that reflect what matters to you, like pain, functioning, sleep, mood, captured through mobile health apps and wearables, and then connect those measures back to real\u2011world gynecologic care (9.10). Without that kind of support, it would be much harder to move beyond \u201cHow bad is your pain on a 0\u201310 scale today?\u201d to a richer picture of what your month actually looks like.<\/p>\n<p><strong>A closer look\u00a0<\/strong><\/p>\n<p>Because the expressed frustration about funding is often directed at large federal research funders, it\u2019s important to also look at where change is happening inside that system. Within NIH, NICHD is the institute that focuses on child health, development, and reproductive health and allocates ~37% of its grant funding to women\u2019s health research (7). This institute has been supporting work on gynecologic pain and menstrual disorders, including endometriosis, dysmenorrhea, heavy menstrual bleeding, and chronic pelvic pain (14,15,19).<sup>\u00a0<\/sup>Some notable examples:<\/p>\n<ul>\n<li><strong>Named priorities.<\/strong> Endometriosis and related conditions appear in NIH\u2011wide initiatives on \u201cchronic conditions understudied among women\u201d which call for more and better tools to diagnose and manage these disorders (15-17).<\/li>\n<li><strong>Targeted calls.<\/strong> NICHD and the Office of Research on Women\u2019s Health (ORWH) co\u2011lead funding announcements that explicitly invite proposals on women\u2019s health, including understudied chronic conditions and diverse populations (14,15,18).<\/li>\n<li><strong>Community\u2011building.<\/strong> NICHD convenes an annual <a href=\"https:\/\/videocast.nih.gov\/watch\/715c1f52-22de-11f1-9f14-124f0a52e769\" target=\"_blank\" rel=\"noopener\">gynecologic pain meeting<\/a>, where researchers share findings, debate methods, and discuss how to translate digital measures and new diagnostics into care. Those meetings matter\u2014they create a space where pelvic pain is treated as a serious research topic, not a niche concern (9).<\/li>\n<\/ul>\n<p>Our own NICHD\u2011funded R01 is one small part of that picture. It focuses on developing and evaluating mobile health\u2011based outcome measures for chronic pelvic pain, with the long\u2011term goal of improving communication and monitoring in everyday gynecologic care (9,10). NICHD is not the only player, and it does not solve all of the funding gaps. But it is one prominent example of how federal institutes or agencies can prioritize women\u2019s health.<\/p>\n<p><strong>Other sparks of progress<\/strong><\/p>\n<p>Beyond NIH, there are signs of change in the wider research and funding ecosystem. Some private foundations and philanthropic efforts are beginning to support innovations in menstrual health, endometriosis diagnostics, and chronic pelvic pain, often in partnership with patient advocacy groups (1,17).<sup>\u00a0<\/sup>Other investors have started to invest funds focused on women\u2019s health across agencies and sectors, and millions of dollars in new funding over the next several years. Academic centers and consortia have launched dedicated women\u2019s health research programs and seed funding mechanisms. These efforts are early and uneven. Many conditions still lack the level of sustained, large\u2011scale funding enjoyed by better\u2011known chronic diseases. But the fact that national reports, government initiatives, and philanthropic programs are now talking about women\u2019s health funding explicitly is itself a shift from even a decade ago (4-7).<\/p>\n<p><strong>Naming the gaps without losing sight of progress<\/strong><\/p>\n<p>Nevertheless, the overall share of funding devoted specifically to women\u2019s health and gynecologic disorders remains out of proportion to their burden. Many conditions, including endometriosis, still lack large, coordinated trials, robust registries, and long\u2011term follow\u2011up studies that are standard for other chronic diseases (4-7,21).<sup>\u00a0<\/sup><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/39679866\/\" target=\"_blank\" rel=\"noopener\">Recent analyses<\/a> have recommended structural changes, such as creating a dedicated NIH institute for women\u2019s health research and substantially increasing total investment over at least five years. Those kinds of changes would help ensure that what is happening now at NICHD and other institutes is the beginning of a larger shift, not just a set of isolated efforts (7,16).<\/p>\n<p><strong>What this means for you and what comes next<\/strong><\/p>\n<p>If you live with endometriosis, chronic pelvic pain, or are managing menopausal transition on your own, you shouldn\u2019t have to track every funding announcement to feel hopeful. What I want to emphasize is that there are researchers, clinicians, and funders working to change the underfunding, stigma, and delay you are hearing in mainstream conversations. In our lab, we are using funding support to:<\/p>\n<ul>\n<li>Build digital health tools and outcome measures specifically designed for chronic pelvic pain and related conditions.<\/li>\n<li>Study daily symptom, activity, and sleep patterns to make invisible experiences more legible in care.<\/li>\n<li>Explore AI\u2011driven approaches to identify under\u2011documented conditions in clinical narratives and to personalize interventions, always with an eye on how these tools affect real people\u2019s lives.<\/li>\n<\/ul>\n<p>The funding picture for women\u2019s health is still far from where it needs to be. But I see more movement in policies, initiatives, and funded projects than I did even a few years ago. My hope is that we can continue to name the gaps clearly, while also building, together, the research and tools that women and people with gynecologic pain have needed all along.<\/p>\n<hr \/>\n<p class=\"my-2 [&amp;+p]:mt-4 [&amp;_strong:has(+br)]:inline-block [&amp;_strong:has(+br)]:align-top\">About the author: Ipek Ensari, PhD, is an Assistant Professor at the Icahn School of Medicine at Mount Sinai Department of AI and Human Health and principal investigator of the CPP Tracker study on chronic pelvic pain. Her research focuses on validation and reliability evaluation of wearable and app data on women\u2019s health and conditions like endometriosis, adenomyosis, and fibroids. Her recent talks and writings cover accuracy and reliability of digital health data and AI methods for women\u2019s health, and how to responsibly use wearable and smartphone data in clinical research and real\u2011world settings.<\/p>\n<p><strong>References<\/strong><\/p>\n<ol>\n<li><a href=\"https:\/\/www.nature.com\/articles\/s44294-024-00048-6\">https:\/\/www.nature.com\/articles\/s44294-024-00048-6<\/a><\/li>\n<li><a href=\"https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC9127440\/\">https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC9127440\/<\/a><\/li>\n<li><a href=\"https:\/\/www.medicalnewstoday.com\/articles\/endometriosis-why-is-there-so-little-research\">https:\/\/www.medicalnewstoday.com\/articles\/endometriosis-why-is-there-so-little-research<\/a><\/li>\n<li><a href=\"https:\/\/www.nature.com\/articles\/d41586-023-02231-2\">https:\/\/www.nature.com\/articles\/d41586-023-02231-2<\/a><\/li>\n<li><a href=\"https:\/\/www.nature.com\/articles\/s44222-024-00253-7\">https:\/\/www.nature.com\/articles\/s44222-024-00253-7<\/a><\/li>\n<li><a href=\"https:\/\/www.nature.com\/immersive\/d41586-023-01475-2\/index.html\">https:\/\/www.nature.com\/immersive\/d41586-023-01475-2\/index.html<\/a><\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK612400\/\">https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK612400\/<\/a><\/li>\n<li><a href=\"https:\/\/www.who.int\/health-topics\/women-s-health\">https:\/\/www.who.int\/health-topics\/women-s-health<\/a><\/li>\n<li>https:\/\/dl.acm.org\/doi\/full\/10.1145\/3772363.3799243<\/li>\n<li>https:\/\/www.tandfonline.com\/doi\/abs\/10.2147\/JPR.S499102%4010.1080\/tfocoll.2025.0.issue-The-Future-of-Pain-Medicine<\/li>\n<li><a href=\"https:\/\/labs.icahn.mssm.edu\/ensarilab\/\">https:\/\/labs.icahn.mssm.edu\/ensarilab\/<\/a><\/li>\n<li><a href=\"https:\/\/aspe.hhs.gov\/conceptualizing-data-infrastructure-capture-use-patient-generated-health-data\">https:\/\/aspe.hhs.gov\/conceptualizing-data-infrastructure-capture-use-patient-generated-health-data<\/a><\/li>\n<li><a href=\"https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC11491599\/\">https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC11491599\/<\/a><\/li>\n<li><a href=\"https:\/\/orwh.od.nih.gov\/mmm-portal\/funding-opportunities\">https:\/\/orwh.od.nih.gov\/mmm-portal\/funding-opportunities<\/a><\/li>\n<li><a href=\"https:\/\/orwh.od.nih.gov\/sites\/orwh\/files\/docs\/NIH%20Fact%20Sheets%20on%20Womens%20Health%20Research_050924_508c.pdf\">https:\/\/orwh.od.nih.gov\/sites\/orwh\/files\/docs\/NIH Fact Sheets on Womens Health Research_050924_508c.pdf<\/a><\/li>\n<li><a href=\"https:\/\/www.nationalacademies.org\/news\/to-advance-womens-health-research-nih-should-form-new-institute-and-congress-should-appropriate-new-funding-says-report\">https:\/\/www.nationalacademies.org\/news\/to-advance-womens-health-research-nih-should-form-new-institute-and-congress-should-appropriate-new-funding-says-report<\/a><\/li>\n<li><a href=\"https:\/\/www.utsouthwestern.edu\/research\/womens-health\/funding\/\">https:\/\/www.utsouthwestern.edu\/research\/womens-health\/funding\/<\/a><\/li>\n<li><a href=\"https:\/\/discoverwhr.nih.gov\/funding\/\">https:\/\/discoverwhr.nih.gov\/funding\/<\/a><\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"<p>The Pondering Professor Series If you live with endometriosis, chronic pelvic pain or another gynecologic condition, or you are going through menopause, you\u2019ve probably heard some version of this lately: \u201cNo one is funding research on this.\u201d, \u201cIf this were a male reproductive disorder, we\u2019d know a lot more by now.\u201d, \u201cWomen\u2019s health is getting [&hellip;]<\/p>\n","protected":false},"author":640,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"off","_et_pb_old_content":"","_et_gb_content_width":"","inline_featured_image":false,"footnotes":""},"categories":[36,55,1],"tags":[],"class_list":["post-5725","post","type-post","status-publish","format-standard","hentry","category-digital-data","category-funding","category-womens-health"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/posts\/5725","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/users\/640"}],"replies":[{"embeddable":true,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/comments?post=5725"}],"version-history":[{"count":20,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/posts\/5725\/revisions"}],"predecessor-version":[{"id":5766,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/posts\/5725\/revisions\/5766"}],"wp:attachment":[{"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/media?parent=5725"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/categories?post=5725"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/labs.icahn.mssm.edu\/ensarilab\/wp-json\/wp\/v2\/tags?post=5725"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}