SheSpeaks
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.
Centering Community Voices in Research & Policy
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 1996The Problem
Fibroids 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.
Our Solution: SheSpeaks
Participatory Policy Labs
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.
Testimonies & Storytelling Campaigns
We support women in sharing their reproductive health stories with lawmakers, medical schools, and funders, ensuring their lived experiences drive systemic change.
Data Justice & Evaluation
We are partnering with university researchers so that community data is collected ethically, reviewed by an Institutional Review Board, and owned and shared with the community.
Arizona Policy Advocacy
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 Approach
CBPR Model
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 and community surveys, and we are forming a peer advisory board, to better understand real needs and design solutions that reflect the community's voice.
Community-Led Research
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.
Key Benefits of Our Approach
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 ensure community voice, and we are forming a peer advisory board
Culturally relevant surveys to understand real needs
More effective and lasting programs for underserved groups
Creates relevant, impactful, and sustainable health solutions
How We Center Community Voices
Listening Sessions
Regular community meetings where women share their experiences with PCOS and fibroids, identifying priorities and solutions.
Peer Advisory Boards
Women with lived experience guide our research priorities, review study designs, and ensure our work stays community-centered.
Culturally Relevant Research
Surveys and studies designed with cultural competency to capture the real experiences of BIPOC women across Arizona communities.
NOW ACCEPTING STORYTELLERS AND ARTISTS
In Her Own Hand and The Exam Room
Share your story on the walls, on the stage, or both. Contributing artist credit and paid participation.
Join the projectsArizona Community Needs Survey: Period Products
We found no peer-reviewed study of period product insecurity among Arizona community members, and none measuring how it affects people living with PCOS/PMOS, fibroids, or heavy periods. Earlier Arizona data comes from two small campus student surveys: an ASU honors thesis (2020, 94 students) and a University of Arizona program survey (2021, 172 students).
Sources
- Ronning KEM. Attitudes and Experiences with Period Poverty at Arizona State University. Barrett Honors Thesis, Arizona State University, 2020. https://keep.lib.asu.edu/items/131382
- University of Arizona Office of Sustainability. The ExtraVAGanza Project, pre-survey results. https://sustainability.arizona.edu/projects/extravaganza-project
Keza helps women track symptoms and patterns and brings peer-reviewed research into everyday language.
Keza data is not used for research. If that ever changes, it will happen only through a university-approved study with separate, opt-in consent.
Not a period app
Keza listens to the whole body, cycle, HS flares, sleep, stress, food, mood, meds, and perimenopause, not just bleeding.
Peer-reviewed citations
Every insight is grounded in research you can read for yourself. Nothing invented, nothing inflated.
Doctor's Corner brief
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.
For Research Partners
One in Every 10 is seeking a university research partner for an Arizona community study of period product insecurity, using the Van Ness Period Product Insecurity Scale (Bowman, Women's Health, 2026).
What we bring:
- Trusted access to women in Maricopa and Pima counties through free period kit distribution, partner sites, and community events
- A focus on women living with PCOS/PMOS, fibroids, and heavy or irregular periods
- Storytelling and lived-experience programs (SheSpeaks, The Exam Room, In Her Own Hand)
What we ask of partners:
- A faculty lead to guide study design and Institutional Review Board review
- Shared authorship and community review of findings before publication
- A written data-sharing agreement that keeps the community as co-owner of the data
- Results returned to the community in plain language
Our commitments:
- No data collection for research until a university IRB has reviewed the study
- Adults 18 and older only, unless an IRB approves a separate study with parental permission
- Any work with tribal communities follows each Tribal Nation's own protocols and the Arizona Board of Regents Tribal Consultation Policy (ABOR 1-118)
Your Voice Matters in Research
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.
Sources & References
Sources below are labeled by type: peer-reviewed studies, government and public health data, clinical guidelines, and advocacy or nonprofit reports. Follow any link to read the original source.
- Racial and Ethnic Differences in the Pathogenesis and Clinical Manifestations of Uterine LeiomyomaCatherino WH, Eltoukhi HM, Al-Hendy A • Seminars in Reproductive Medicine • 2013 • Fibroid prevalence is roughly three times higher among women of African ancestry
- High cumulative incidence of uterine leiomyoma in black and white women: ultrasound evidenceBaird DD, Dunson DB, Hill MC, Cousins D, Schectman JM • American Journal of Obstetrics & Gynecology • 2003 • Ultrasound screening study; cumulative incidence by age 50 of >80% in Black women and ~70% in white women
- Uterine leiomyomas: racial differences in severity, symptoms and age at diagnosisKjerulff KH, Langenberg P, Seidman JD, Stolley PD, Guzinski GM • The Journal of Reproductive Medicine • 1996 • Mean age at diagnosis 37.5 years for Black women vs 41.6 for white women; anemia in 56% vs 38%
- Gender Disparity in the Funding of Diseases by the U.S. National Institutes of HealthMirin AA • Journal of Women's Health • 2021 • In nearly three-quarters of cases where a disease affects primarily one gender, NIH funding favors male-predominant conditions relative to disease burden
- NIH RePORTER, federally funded research project databaseU.S. National Institutes of Health • 2024 • FY2023 awards: ~$33M across 87 PCOS projects; ~$31M across 47 uterine fibroid projects