Democratic Rep. Jillian Gilchrest of West Harford’s 18th District is advocating for endometriosis on the Connecticut statewide agenda and hopes to eventually pass this legislation nationally. It calls for expansion and improvements in three key areas: endometriosis research, endometriosis-specific training for healthcare professionals, and access to endometriosis-related healthcare. If Gilchrest’s bills were to be implemented nationwide, women with endometriosis would receive the care they deserve, and an increased focus on research could uncover the etiology of this disease without a cure.
Endometriosis is a painful gynecological condition that causes moderate to severe pelvic pain associated with menstruation. The disease can have a wide range of negative effects, including but not limited to nausea, pain during intercourse, and in some cases, infertility. Treatment options for endometriosis have historically been limited, as the preferred first-line treatments are nonsteroidal anti-inflammatory drugs (NSAIDs) and oral contraceptives (OCPs) – two off-label options that do not modify the disease and, therefore, may have limited efficacy in alleviating pain associated with endometriosis.
Marketed therapies for endometriosis include classes of drugs such as gonadotropin-releasing hormone (GnRH) agonists, progestins, estrogen antagonists, and more recently, GnRH antagonists. While some of these drugs can be given orally via a tablet, others are injected directly, limiting doctors’ ability to titrate the dosage provided. Additionally, the side effects associated with these therapies can be aggressive, creating menopause-like symptoms such as hot flashes. Endometriosis medications also have limited long-term use, as NSAIDs and OCPs are the only options that can be used for more than a few years. Another key issue with existing therapies for endometriosis is the lack of non-hormonal therapy options. A key opinion leader from GlobalData (KOL) elaborated on this issue by stating:
“Probably the greatest unmet need for endometriosis is that women with pelvic pain are usually treated with hormonal drugs, which are contraceptives. So when the woman has pelvic pain, but is too [trying] for the pregnancy, she must choose between [treating] pain [by] take hormone therapy or [pursuing] pregnancy. Future strategies should aim to find [a] non-contraceptive and non-teratogenic, of course, pharmacological solution to treat pelvic pain from endometriosis. – EU key opinion leader
Representative Gilchrest advocated for endometriosis in the state of Connecticut to increase research funding, improve endometriosis-specific training for healthcare professionals, and expand access to adequate medical care and products. She is part of an organization called the Endometriosis Task Force, which held a press conference on February 17 to discuss their 2022 recommendations:
- Improved training of healthcare providers
- Require that all health care providers receive endometriosis-specific information in areas such as best practices for identification, disease treatment, explicit and implicit biases, etc.
- School nurse training
- All school nurses receive school nurse training and toolkits to continue education on endometriosis.
- Menstrual fairness
- Require that all menstrual products be free in all Connecticut public schools, K-college, shelters, jails and jails.
- Access to medical care
- Require Medicaid and insurance coverage for endometriosis care
- Fertility preservation
- Require Medicaid and insurance coverage for fertility preservation for people with endometriosis.
- Student education
- Ensure that endometriosis, uterine fibroids, polycystic ovary syndrome (PCOS) and interstitial cystitis (IC) are included in the human growth and development program.
- Data gathering
- Work with the Department of Public Health to initiate the collection of clinical and tissue data to better study and understand endometriosis.
- Expand endometriosis research with adequate representation of black patients, Latinx patients, patients of color, transgender and gender-diverse patients, and patients with disabilities.
As mentioned by Rep Gilchrest, endometriosis is incurable and the only method to definitively diagnose the disease is laparoscopy, a potentially invasive and expensive surgical procedure. Without laparoscopic confirmation, patients are treated with “suspected” endometriosis, with physicians treating patients assuming that endometriosis is the cause of their symptoms. However, the non-specificity of symptoms and the variety of symptoms from case to case mean that endometriosis can be difficult to diagnose. As a result, many women go undiagnosed for years or are completely misdiagnosed. The normalization of painful periods also contributes to the prolonged suffering of patients with endometriosis.
Gilchrest and the Endometriosis Group are now focusing on a public health bill and an education bill to address their 2022 recommendations, which they hope to bring to the state Capitol. If successful, these bills would promote research and the training of health professionals for a disease that is too often overlooked.