Endometriosis Working Group

Endometriosis

Press Conference on 2024 Policy Recommendations

Youtube

Full Presser

https://youtu.be/NEkbgen0WTo

Rep. Gilchrest

https://youtu.be/S8XY2rhgtQI

2024 POLICY RECOMMENDATIONS

Funding for Connecticut’s Endometriosis Biorepository

Uphold funding for the state Endometriosis Data and Biorepository Program, here forth called EndoRISE, as approved in the in FY 24 and FY 25 budget, passed in PA 23-204, § 137.

Fertility Preservation

Require Medicaid and insurance coverage for fertility preservation for individuals with gynecologic conditions that cause infertility and fertility issues such as endometriosis, and work with the State Department of Public Health to provide accessible resources for individuals seeking more information on fertility preservation.

School Nurse Training

Work with school nurses to develop recommendations on continuing education credentialing and training, related to endometriosis, that includes information on symptoms and resources, explicit and implicit bias, microaggressions, systemic racism, racial disparities, anti-blackness, and experiences of transgender & gender diverse youth. Encourage School Nurses to provide in-service trainings for school staff, in particular athletic trainers, related to the topics outlined.

Menstrual Education for Students

Work with the State Department of Education, Local Boards of Education, teachers, and health educators to establish and enact health education standards to include education on menstruation and ensure that students receive age and grade appropriate education, beginning in the late elementary years through grade 12.

Paid Sick Days

Expand Connecticut’s Paid Sick Days legislation to ensure that a greater number of Connecticut workers can access time out of work, due to personal illness or the illness of a loved one.

Women’s Pain

Work with the medical community to ensure women’s pain is taken seriously and that women are offered appropriate pain medication for certain procedures including, but not limited to biopsies and intrauterine device (IUD) placement and removal. Continue the conversation surrounding medical education and training on women’s pain, with specific attention paid to women of color.

Recent Meetings

3/11/24 Meeting: https://ct-n.com/ctnplayer.asp?odID=22808
5/13/24 Meeting: https://ct-n.com/ctnplayer.asp?odID=23133
6/10/24 Meeting: https://ct-n.com/ctnplayer.asp?odID=23229
9/9/24 Meeting: https://ct-n.com/ctnplayer.asp?odID=23523

In the News

I talked about recent accomplishments and priorities moving forward when it comes to gender gaps and women-centered policy in Connecticut on Fox 61 (October 2024)

https://www.fox61.com/video/news/politics/intersectional-policy-womens-history-the-real-story/520-0ca62786-c2ab-40b6-861c-97dd4279ab85

https://www.ctpublic.org/news/2024-09-09/endometriosis-symptoms-treatment-connecticut-law (September 2024)

https://www.science.org/content/article/watershed-moment-shadow-disease-first-state-mandated-endometriosis-biorepository (June 2024)

'Not all in your head': Examining endometriosis - WNPR (July 2023)

2023

House Bill 6672 - AN ACT CONCERNING ENDOMETRIOSIS.

For those with endometriosis, endometrial-like tissue grows outside the uterus. Nearby reproductive organs are often affected but the disease has been found in every major organ system. Tissue can grow on or around a person’s ovaries, fallopian tubes, and beyond. Tissue growth can also spread to other organs, even if they’re not related to reproduction. Some people have endometriosis on or around their bowels, rectum, bladder and, in some cases, tissue may spread as far as the chest cavity.

Beyond the physical pain that over 194 million individuals with the endometriosis experience, those suffering from the disease are often misdiagnosed, told the pain is normal, or accused of making up their symptoms. The Endometriosis Working Group has announced several priorities to create greater awareness and expand access to care.

Priorities Include:

Establishment of Connecticut’s Endometriosis Biorepository
School Nurse Training
Fertility Preservation
Fertility Specialist Training and Screening
Education for Students
Menstrual Equity
Access to Medical Care

Join the Endometriosis Working Group by emailing Chandra Persaud, Legislative Aide to Rep. Gilchrest, at Chandra.Persaud@cga.ct.gov

In the News

July 31, 2023

Why CT lawmakers are tackling endometriosis, a uterine disease that affects 1 in 10

June 8, 2023 - Medical Press

Connecticut legislature approves historic endometriosis bill

March 5, 2023 - Yale News
As endometriosis bills reach CT state assembly, patients and doctors weigh in
Patients, doctors and a state representative spoke on the future of endometriosis advocacy and action in Connecticut.

February 1, 2023 - Rep. Jillian Gilchrest
Endometriosis Data and Biorepository Program Plan Submitted to the Public Health Committee

December 26, 2022 - UConn Health
UConn Health & The Jackson Laboratory For Genomic Medicine Report To The Public Health Committee To Develop A Plan To Establish An Endometriosis Data And Biorepository Program

December 7, 2022 - CT Mirror
Endometriosis and the barriers to care