Transforming Science for PCOS and Fibroids by centering community voices in research and policy, ensuring the experiences of BIPOC women drive systemic change in healthcare and research funding.
more common for Black women to develop fibroids than white women
Source: Catherino et al., Semin Reprod Med 2013of Black women, and nearly 70% of white women, develop fibroids by age 50
Source: Baird et al., Am J Obstet Gynecol 2003earlier average age at fibroid diagnosis for Black women (37.5 vs 41.6)
Source: Kjerulff et al., J Reprod Med 1996of Black vs white women with fibroids undergoing hysterectomy were anemic
Source: Kjerulff et al., J Reprod Med 1996Fibroids are about three times more common in Black women than white women, and by age 50, more than 80% of Black women and nearly 70% of white women have developed fibroids. Black women are also diagnosed about four years earlier on average and are more likely to be anemic at the time of hysterectomy — yet their experiences remain underrepresented in clinical research.
NIH funding is disproportionately low relative to disease burden for many conditions that primarily affect women, including PCOS and uterine fibroids. In FY2023, NIH awarded roughly $33 million across 87 PCOS projects and $31 million across 47 uterine fibroid projects — modest sums relative to how common these conditions are. In Arizona, these research and funding gaps are compounded for low-income women—particularly Latina, Indigenous, and Black women—who face barriers in Medicaid coverage, limited fertility services, and the absence of state-level research mandates.
We bring together patients, researchers, and policymakers to co-design legislative proposals and institutional reforms, ensuring women most impacted by PCOS and fibroids shape the solutions.
We support women in sharing their reproductive health stories with lawmakers, medical schools, and funders, ensuring their lived experiences drive systemic change.
We implement community-driven research methods that prioritize equity, transparency, and participant benefit while challenging biased data practices that erase BIPOC and low-income women.
Specific legislative and policy changes we're working toward in Arizona
Push for state-level funding dedicated to PCOS and fibroid research with an equity lens
Expand Medicaid coverage to include diagnostic imaging, fertility care, and minimally invasive treatments for fibroids
Pass data equity laws requiring state health departments to collect and publicly report race- and income-specific reproductive health data
Advocate for research inclusion mandates so that BIPOC women's health outcomes are a required focus in state-funded research grants
Community-Based Participatory Research ensures equal partnership
We follow the Community-Based Participatory Research (CBPR) model, which ensures that people living with PCOS and fibroids are equal partners in shaping our work. From research design to program evaluation, their lived experiences guide every step.
This approach builds trust and promotes shared decision-making. We host listening sessions, peer advisory boards, and culturally relevant surveys to better understand real needs and design solutions that reflect the community's voice.
Centering the people most affected in how research and programs are designed
A community-led approach means the people living with PCOS and fibroids help set research priorities and shape how programs are evaluated, rather than being studied as passive subjects.
By working with the communities we serve, we aim to create more relevant, impactful, and sustainable health solutions.
Equal partnership between community members and researchers
Lived experiences guide every step from research design to program evaluation
Builds trust and promotes shared decision-making
Listening sessions and peer advisory boards ensure community voice
Culturally relevant surveys to understand real needs
More effective and lasting programs for underserved groups
Creates relevant, impactful, and sustainable health solutions
Regular community meetings where women share their experiences with PCOS and fibroids, identifying priorities and solutions.
Women with lived experience guide our research priorities, review study designs, and ensure our work stays community-centered.
Surveys and studies designed with cultural competency to capture the real experiences of BIPOC women across Arizona communities.
Our current community-led research project asks whether period poverty has a worse direct, negative impact on the physical and mental wellbeing of menstruators living with PCOS or fibroids. Your answers shape the data.
Arizona deserves better data on period poverty—and your experience can help change that. One in Every 10 is gathering community voices to better understand how access to period products affects Arizona residents, especially those living with PCOS, uterine fibroids, or heavy and irregular periods. Take a few minutes to help us turn lived experiences into research, awareness, advocacy, and action.
This is voluntary and anonymous. It helps us understand period poverty in Arizona and is not a medical questionnaire.
SheSpeaks centers BIPOC women's voices in research. Keza is the app that captures those voices — logging symptoms, cycles, flares, sleep, stress, food, and mood, then surfacing patterns with peer-reviewed citations. It is how we close the research gap: one woman, one logged day, one cited study at a time.
Keza listens to the whole body — cycle, HS flares, sleep, stress, food, mood, meds, and perimenopause — not just bleeding.
Every insight is grounded in research you can read for yourself. Nothing invented, nothing inflated.
Turns your logs into a print-ready summary so appointments stop being a guessing game.
Free. Installable on any phone from keza.oneinevery10.org — no app store required.
Join SheSpeaks to ensure BIPOC women's experiences with PCOS and fibroids drive the research agenda, influence policy decisions, and create lasting change in healthcare equity.
Every statistic on this page is drawn from the peer-reviewed literature or federal public health data. Follow any link to read the original source.