In March of 2025, four of us endometriosis patients (and two incredible mothers) traveled to Washington DC with the intention of educating senators about endometriosis so that they can make better choices for patients in the future. There was no lobbying for a specific bill, just teaching.
We presented a beautiful book to each of the 22 senators and aides with whom we met and it went off perfectly. There was emphatic support for reform from both republicans and democrats alike. Endometriosis is a human issue: an issue for all races, classes, localities, and seasons of life. It is physical, emotional, economic. It affects family, school, career, relationships… It affects perhaps one in seven of the female sex (plus an unknown number of less “traditional” cases which are also of immense importance). Endometriosis, in one way or another, affects everyone.
And so, we presented the issue as such to some of our elected officials and they saw the value of serious reform.
During our conversations with senate offices, we discovered how all of our collective hopes, dreams, and “asks” began upstream with one simple but impactful thing: Officially correct the verbiage surrounding the condition at a government level through Report Language in the FY26 appropriations bill.
We were thrilled and got to work on this very thing. It was Senator James Lankford (R, OK) who championed our cause and introduced this language change in the bill. We also had the strong support of the other (bipartisan) senators with whom we had met.
The exact language we submitted PASSED in the senate. At the time of this being written, we are awaiting House approval and President approval. Things look promising though.
We want to keep you in the loop in this journey so that you may be encouraged. We went in to the US Senate with a “skeleton crew and no budget” and came out with a beautiful foundation for future good to occur.
We are not a lobbying organization, we are an educational one and one that seeks to support endometriosis patients in “the now”. This just goes to show you how education and teamwork can accomplish incredible things.
This success could have never happened without the tireless work of all endometriosis advocates everywhere. The conferences, the demonstrations, the documentaries, the meetings… The individuals, the nonprofits, the for profits, the support groups… We are always stronger together.
We will keep you posted with future developments, but celebrate with us today!
If you would like to join the mission of End of Endo Project, volunteer with us!
If you would like to contribute any amount financially, donate!
AEEP is proud to be among the many who are making positive change every day for people suffering from endometriosis.
Let’s make history TOGETHER.
xo Holly
Awesome from NH!! I’m in contact with my Congress people now. Your language reforms, and work brought a tear to this dad. Can you please call me ASAP. I’m a father and a husband of two very serious Endo patients near the end of our ropes. I’m trying to get down to DC to testify before Congress. Could really use your inputs. I’m trying to raise awareness that only 0.07% of the NIH budget goes towards Endo! My 34 year old daughter has succumbed to needing a cane just to hold down her part time job of 20 hours per week as that’s all her body can handle. She seems to be headed for a wheelchair rapidly, and Harvard Pilgrim Health plan is continuing to give us as hard a time as possible. Even getting the surgeon requested T3 MRN with stain approved to assist the second surgery plan later this year is proving to be a challenge for Harvard Pilgrim. My daughter had to learn how to read her own 1500 MRI images because the Radiology Lab RAYUS in ME took 11 months to provide her surgeon a misread. My daughter self-taught radiologist found on the images two nodules exactly where she feels pain. The Radiologist now asserts 11 months later “its normal image distortion.” I’m trying to get meetings with Rep Chris Pappas NH and Senator Maggie Hassan NH during this Congressional recess. Have you any insight into if the NH delegation was helpful when you met with Congress. Any tips you can offer. Can we connect by phone. My number is 603-205-4435, please call Mark urgently, in eastern time zone. Thank you and bless you girls and team for all the heavy lift you have already done!!! NIH funding for endo is 0.07% of their healthcare budget, about $4.30 per patient vs cancer investments of nearly 300x more even though after 50 years we’ve only improved cancer suitability rates by 15% and extended lives approximately 2 weeks.