Endometriosis Patients Can’t Wait Another 20 Years: Fund Non-Hormonal Treatments Now

Recent signers:
Isabella Monville and 19 others have signed recently.

The Issue

To the Honorable Members of the United States Congress and Senate, The National Institutes of Health (NIH), and The Food and Drug Administration (FDA),

We, the undersigned patients, families, and supporters affected by endometriosis, call on you to act now:

  1. Expand and pass the Endometriosis CARE Act (H.R. 8585, 118th Congress, reintroduced H.R. 6682, 119th Congress) while the bill’s education and awareness initiatives are vital, it must also include at least $600 million in dedicated funding over four years for research and clinical trials on disease-modifying, immune-targeted, and metabolic therapies, which have the potential to reduce surgery and improve quality of life for patients.
  2. Establish a dedicated NIH program to fund preclinical and translational research on new endometriosis treatments, supporting both the development of new immune-pathway therapies such as JNK inhibitors and the repurposing of existing drugs such as GLP-1 receptor agonists and Metformin that show strong potential to be disease-modifying and treat endometriosis symptoms.
  3. Invest in non-invasive early diagnostic tools, including blood-based biomarker assays such as DotLab’s DotEndo, to reduce the current seven- to ten-year diagnostic delay and enable earlier, more effective treatment.
  4. Create incentives for pharmaceutical innovation, including tax credits, public-private partnerships, and regulatory pathways that attract industry participation, similar to the incentives that have accelerated drug development in other chronic diseases.
  5. Encourage FDA fast-track designation for non-hormonal candidates and recognize pain relief and quality of life as primary trial endpoints.

Endometriosis is a systemic immune inflammatory disease that behaves like a cancer and impacts quality of life as severely as an autoimmune disease, yet no treatment has been developed that improves patients pain significantly or prevents surgical intervention.

Endometriosis affects 1 in 10 women, roughly 6.5 million in the United States and 190 million worldwide [3]. For many, it causes daily, disabling pelvic pain that prevents them from working, studying, and living full lives [4]. Despite its prevalence and impact, treatment has barely advanced in decades. Modern research confirms that endometriosis is not only a hormonal disorder but a chronic, immunological, and inflammatory disease driven by immune dysfunction that fuels pain, inflammation, and lesion growth [1].

  • About 25–33% of women with endometriosis don’t get meaningful pain relief from first-line hormonal treatments [2].
  • Even after surgery, 20–40% relapse within 5 years [5].
  • People with endometriosis face a ~42% higher relative risk of self-harm, overdose, or suicide compared to those without the disease [6].
  • In the U.S., over half of newly diagnosed patients fill an opioid prescription within a year, despite opioids not being recommended [7].

Meanwhile, science has identified promising non-hormonal drug candidates. The JNK pathway in particular has long been recognized as a promising target because blocking it could reduce the pain, inflammation, and lesion growth that drive endometriosis. Other avenues also deserve urgent investment:

  • JNK pathway inhibition - from published candidates like bentamapimod (AS602801) with demonstrated preclinical efficacy [8], to newer next-generation JNK inhibitors now in development [9].
  • Vipoglanstat, an mPGES-1 inhibitor in Phase II trials for endometriosis [10].
  • Metformin, being evaluated as a non-hormonal adjunct for endometriosis-related pelvic pain [11].
  • GLP-1 receptor agonists, shown to have anti-inflammatory and anti-fibrotic effects in endometrial tissue [12], warrant urgent study for endometriosis. 

Endometriosis is also an innovation and investment opportunity. The disease affects millions, imposes tens of billions in yearly economic losses, and yet remains almost untouched by modern drug development. Like Crohn’s disease once was, it is a chronic inflammatory condition with clear molecular targets but limited industry engagement. The FDA, NIH, Congress, and Senate, must recognize that advancing endometriosis research is not only a public-health priority but a chance to drive scientific and economic progress. That means working with and incentivizing pharmaceutical companies to pursue non-hormonal, immune-targeted, and pain-modifying therapies, just as public–private initiatives once transformed the treatment landscape for other chronic diseases.

For too long, patients have been told that hormones and surgery are their only options. They are not enough. We deserve non-hormonal treatments, and we cannot wait another 20 years.

Sign this petition to demand action.

References (abbreviated):

  1. Abramiuk, M., Grywalska, E., Małkowska, P., & Niedźwiedzka-Rystwej, P. (2022). The Role of the Immune System in the Development of Endometriosis. Frontiers in Immunology, 13, 1010828. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9265783/
  2. Cetera GE, Merli CEM, Facchin F, Viganò P, Pesce E, Caprara F, Vercellini P. Non-response to first-line hormonal treatment for symptomatic endometriosis: overcoming tunnel vision. BMC Womens Health. 2023;23:347.https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-023-02490-1
  3. NICHD. Spotlight on Endometriosis: A Closer Look at a Common Disorder. March 12, 2018. https://www.nichd.nih.gov/newsroom/resources/spotlight/031218-spotlight-endometriosis
  4. NIH/NICHD. What are the symptoms of endometriosis? 2020. https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/symptoms
  5. Guo SW. Recurrence of endometriosis and its control. Hum Reprod Update. 2009;15(4):441–461. doi:10.1093/humupd/dmp007
  6. Thiel PS, Bougie O, Pudwell J, et al. Risk of self-harm among individuals diagnosed with endometriosis. Obstet Gynecol. 2025 (online ahead of print). doi:10.1097/AOG.0000000000006030
  7. As-Sanie S, Soliman AM, Evans K, Erpelding N, Lanier RK, Katz NP. Short-acting and long-acting opioids utilization among women diagnosed with endometriosis in the United States. J Minim Invasive Gynecol. 2021;28(2):297-306.e2. doi:10.1016/j.jmig.2020.05.029
  8. Palmer SS, Altan M, Denis D, et al. Bentamapimod (JNK inhibitor AS602801) induces regression of endometriotic lesions in animal models. Reprod Sci. 2016;23(1):11-23. doi:10.1177/1933719115600553
  9. Celmatix Inc. Launches Novel Endometriosis Drug Program Targeting the JNK Pathway. Business Wire. January 8, 2025. Available at: https://www.businesswire.com/news/home/20250108111591/en/Celmatix-Launches-Novel-Endometriosis-Drug-Program
  10. Gesynta Pharma. Our pipeline (vipoglanstat — Phase II, endometriosis). https://www.gesynta.se/our-pipeline
  11. ClinicalTrials.gov. Glycemic Regulation as Endometriosis Adjunct Treatment (metformin) — NCT06611501. https://clinicaltrials.gov/study/NCT06611501
  12. Sola-Leyva A, et al. The hidden impact of GLP-1 receptor agonists on the endometrium. Reprod Med Biol. 2024;23(3):e12508. https://pmc.ncbi.nlm.nih.gov/articles/PMC11782050/
     

3,888

Recent signers:
Isabella Monville and 19 others have signed recently.

The Issue

To the Honorable Members of the United States Congress and Senate, The National Institutes of Health (NIH), and The Food and Drug Administration (FDA),

We, the undersigned patients, families, and supporters affected by endometriosis, call on you to act now:

  1. Expand and pass the Endometriosis CARE Act (H.R. 8585, 118th Congress, reintroduced H.R. 6682, 119th Congress) while the bill’s education and awareness initiatives are vital, it must also include at least $600 million in dedicated funding over four years for research and clinical trials on disease-modifying, immune-targeted, and metabolic therapies, which have the potential to reduce surgery and improve quality of life for patients.
  2. Establish a dedicated NIH program to fund preclinical and translational research on new endometriosis treatments, supporting both the development of new immune-pathway therapies such as JNK inhibitors and the repurposing of existing drugs such as GLP-1 receptor agonists and Metformin that show strong potential to be disease-modifying and treat endometriosis symptoms.
  3. Invest in non-invasive early diagnostic tools, including blood-based biomarker assays such as DotLab’s DotEndo, to reduce the current seven- to ten-year diagnostic delay and enable earlier, more effective treatment.
  4. Create incentives for pharmaceutical innovation, including tax credits, public-private partnerships, and regulatory pathways that attract industry participation, similar to the incentives that have accelerated drug development in other chronic diseases.
  5. Encourage FDA fast-track designation for non-hormonal candidates and recognize pain relief and quality of life as primary trial endpoints.

Endometriosis is a systemic immune inflammatory disease that behaves like a cancer and impacts quality of life as severely as an autoimmune disease, yet no treatment has been developed that improves patients pain significantly or prevents surgical intervention.

Endometriosis affects 1 in 10 women, roughly 6.5 million in the United States and 190 million worldwide [3]. For many, it causes daily, disabling pelvic pain that prevents them from working, studying, and living full lives [4]. Despite its prevalence and impact, treatment has barely advanced in decades. Modern research confirms that endometriosis is not only a hormonal disorder but a chronic, immunological, and inflammatory disease driven by immune dysfunction that fuels pain, inflammation, and lesion growth [1].

  • About 25–33% of women with endometriosis don’t get meaningful pain relief from first-line hormonal treatments [2].
  • Even after surgery, 20–40% relapse within 5 years [5].
  • People with endometriosis face a ~42% higher relative risk of self-harm, overdose, or suicide compared to those without the disease [6].
  • In the U.S., over half of newly diagnosed patients fill an opioid prescription within a year, despite opioids not being recommended [7].

Meanwhile, science has identified promising non-hormonal drug candidates. The JNK pathway in particular has long been recognized as a promising target because blocking it could reduce the pain, inflammation, and lesion growth that drive endometriosis. Other avenues also deserve urgent investment:

  • JNK pathway inhibition - from published candidates like bentamapimod (AS602801) with demonstrated preclinical efficacy [8], to newer next-generation JNK inhibitors now in development [9].
  • Vipoglanstat, an mPGES-1 inhibitor in Phase II trials for endometriosis [10].
  • Metformin, being evaluated as a non-hormonal adjunct for endometriosis-related pelvic pain [11].
  • GLP-1 receptor agonists, shown to have anti-inflammatory and anti-fibrotic effects in endometrial tissue [12], warrant urgent study for endometriosis. 

Endometriosis is also an innovation and investment opportunity. The disease affects millions, imposes tens of billions in yearly economic losses, and yet remains almost untouched by modern drug development. Like Crohn’s disease once was, it is a chronic inflammatory condition with clear molecular targets but limited industry engagement. The FDA, NIH, Congress, and Senate, must recognize that advancing endometriosis research is not only a public-health priority but a chance to drive scientific and economic progress. That means working with and incentivizing pharmaceutical companies to pursue non-hormonal, immune-targeted, and pain-modifying therapies, just as public–private initiatives once transformed the treatment landscape for other chronic diseases.

For too long, patients have been told that hormones and surgery are their only options. They are not enough. We deserve non-hormonal treatments, and we cannot wait another 20 years.

Sign this petition to demand action.

References (abbreviated):

  1. Abramiuk, M., Grywalska, E., Małkowska, P., & Niedźwiedzka-Rystwej, P. (2022). The Role of the Immune System in the Development of Endometriosis. Frontiers in Immunology, 13, 1010828. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9265783/
  2. Cetera GE, Merli CEM, Facchin F, Viganò P, Pesce E, Caprara F, Vercellini P. Non-response to first-line hormonal treatment for symptomatic endometriosis: overcoming tunnel vision. BMC Womens Health. 2023;23:347.https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-023-02490-1
  3. NICHD. Spotlight on Endometriosis: A Closer Look at a Common Disorder. March 12, 2018. https://www.nichd.nih.gov/newsroom/resources/spotlight/031218-spotlight-endometriosis
  4. NIH/NICHD. What are the symptoms of endometriosis? 2020. https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/symptoms
  5. Guo SW. Recurrence of endometriosis and its control. Hum Reprod Update. 2009;15(4):441–461. doi:10.1093/humupd/dmp007
  6. Thiel PS, Bougie O, Pudwell J, et al. Risk of self-harm among individuals diagnosed with endometriosis. Obstet Gynecol. 2025 (online ahead of print). doi:10.1097/AOG.0000000000006030
  7. As-Sanie S, Soliman AM, Evans K, Erpelding N, Lanier RK, Katz NP. Short-acting and long-acting opioids utilization among women diagnosed with endometriosis in the United States. J Minim Invasive Gynecol. 2021;28(2):297-306.e2. doi:10.1016/j.jmig.2020.05.029
  8. Palmer SS, Altan M, Denis D, et al. Bentamapimod (JNK inhibitor AS602801) induces regression of endometriotic lesions in animal models. Reprod Sci. 2016;23(1):11-23. doi:10.1177/1933719115600553
  9. Celmatix Inc. Launches Novel Endometriosis Drug Program Targeting the JNK Pathway. Business Wire. January 8, 2025. Available at: https://www.businesswire.com/news/home/20250108111591/en/Celmatix-Launches-Novel-Endometriosis-Drug-Program
  10. Gesynta Pharma. Our pipeline (vipoglanstat — Phase II, endometriosis). https://www.gesynta.se/our-pipeline
  11. ClinicalTrials.gov. Glycemic Regulation as Endometriosis Adjunct Treatment (metformin) — NCT06611501. https://clinicaltrials.gov/study/NCT06611501
  12. Sola-Leyva A, et al. The hidden impact of GLP-1 receptor agonists on the endometrium. Reprod Med Biol. 2024;23(3):e12508. https://pmc.ncbi.nlm.nih.gov/articles/PMC11782050/
     

The Decision Makers

U.S. Senate
6 Members
Jeanne Shaheen
U.S. Senate - New Hampshire
Tammy Baldwin
U.S. Senate - Wisconsin
Charles Schumer
U.S. Senate - New York
U.S. House of Representatives
10 Members
Chuck Fleischmann
U.S. House of Representatives - Tennessee 3rd Congressional District
Rosa DeLauro
U.S. House of Representatives - Connecticut 3rd Congressional District
Robert Aderholt
U.S. House of Representatives - Alabama 4th Congressional District
Kay Granger
Former U.S. House of Representatives - Texas 12th Congressional District

Supporter Voices

Petition Updates