2018-Present

MISSION

SWHR’s Interdisciplinary Network on Estrogen-Driven Conditions brings together clinicians, researchers, patients, and health care decision-makers to provide thought leadership on how to address the gaps in research, diagnosis, treatment, and care for endometriosis, uterine fibroids and related conditions and symptoms.

The goals of the network are to:

  1. Identify unmet needs and articulate necessary incentives to drive innovation in research, diagnosis, and treatment for estrogen-driven conditions.

  2. Engage and inform patients, health care professionals and providers, payers, policymakers, and employers about the patient experience, disease burden, stigma, and impact to society.

  3. Develop strategies and materials to inform and impact value-driven decision-making about estrogen-driven conditions in diagnosis, treatment, and access to care.

BACKGROUND

An estimated 10% of reproductive-age women are living with endometriosis, a condition in which tissue that resembles that of the lining of the uterus grows outside the uterus, leading to lesions, heavy bleeding, and painful periods. About 26 million women suffer from uterine fibroids, a condition in which benign tumors growing in and around the uterus cause heaving and irregular bleeding, anemia, and painful periods. Both diseases can cause severe and debilitating pelvic pain and problems with fertility, significantly impacting the lives of the women with these conditions. The normalization of women’s pain and the stigmatization of menstrual issues have resulted in a lack of scientific innovation and public awareness for many diseases and conditions that disproportionately impact women.

PROGRAM DIRECTOR

Sherie Lou Santos, MPH
SWHR Director of Science Policy
science@swhr.org

NETWORK MEMBERS

Network members will be announced soon.

OUR WORK

Endometriosis Roundtable and Public Forum

To address the significant impact of endometriosis on a woman’s health, quality of life, and productivity, SWHR convened an interdisciplinary group of researchers, clinicians, patients, and other stakeholders for a one-day roundtable meeting and public forum on April 10, 2018, to identify unmet needs and knowledge gaps in endometriosis, and explore the best means to further research, expand diagnostic and treatment options, and improve disease awareness and identification. Read more about the public forum.

Congressional Briefing

On June 19, 2018, SWHR held a congressional briefing, “Endometriosis: Erasing Stigma, Improving Patient Care,” during which a panel of experts addressed the current state of endometriosis research as well as policy solutions to improve a woman’s diagnosis, treatment, and access to care. Read more about the congressional briefing.

Policy Engagement

SWHR submitted comments to the Institute for Clinical and Economic Review (ICER) on the assessment of effectiveness and value of new therapies for endometriosis on February 1, 2018, and May 31, 2018.

Endometriosis Fact Sheet

For a quick overview of endometriosis and the burden of this disease, check out SWHR’s fact sheet.

Media Coverage

LATEST NEWS


Spurring Innovation in Endometriosis Through Policy Changes

Despite its prevalence and potentially severe effects on women, their families, and society, endometriosis is not well known or well understood. SWHR hosted a congressional briefing on June 19 to discuss the current state of endometriosis research as well as identify policy needs to improve a woman’s diagnosis, treatment, and access to care.

Experts Identify Challenges in Endometriosis Research and Patient Care

SWHR brought together a group of patients, clinicians, researchers and other relevant stakeholders in April 2018 for a daylong roundtable meeting to identify unmet needs and knowledge gaps in endometriosis.

SWHR has sole authority over the scope and content of this program. Sponsorship of this network does not imply agreement with any content and/or comments presented by the members during network proceedings.

Sponsors