The past decade or so, endometriosis work in Trinidad and Tobago [TT] focused on raising awareness. These activities united many stakeholders, all in an attempt to sensitize and educate the public about this lesser known public health issue that has an enormous negative impact on symptomatic patients’ quality of life. An estimated 10% of all women and girls are afflicted (endometriosis.org). It’s time! To usher in an era of endometriosis work that translates awareness or education into action, and action into better health outcomes for endometriosis patients. Whilst this is not an email marketing message, it certainly is a call to action for the development of a national action plan for endometriosis [NAPE] for TT. It’s time!

 

Why? Endometriosis activities, past and present, continue to bring first-hand anecdotal accounts and lived experiences to the fore that are consistent with current research. 1. Reduced quality of life due to pain in symptomatic patients – Endometriosis patient Teeanna Peters-John debilitating pain prevented her from working. Rodrigues et al’s (2022) research validates many like Teeanna whose quality of life is compromised by pelvic pain affecting both their professional and sexual life. Rodrigues et al. (2022) explains such situation will impact the patient psychologically, physically and socially. 2. Misdiagnosis and delayed diagnosis – TTEA’s President Ambah Grant cited “The proliferation of misinformation from all quarters, especially from within the medical fraternity” as her main concern for the public that she represents. Interestingly, a 2024 study by the University of York found that there is an average of 6.6 years delay in endometriosis diagnosis but delays in the UK can be up to 27 years. 3. Ineffective endometriosis care – President Grant summaries “Wrong information most times translates to misdiagnosis, and the wrong medical procedures being performed on patients.” It’s time! Address these broad cross-sectional problems with a NAPE!

 

Who? By government of course! The work of endometriosis advocates and organizations cannot be translated into a NAPE without government intervention. National policy-making in TT follows a top-down approach and ultimately resides with government. For example, the TT Government’s health policy on AIDS/HIV lead to the HIV/AIDS Coordinating Unit and its policy on organ donation and transplantation lead to the creation of the National Organ Transplant Unit. Then naturally, NAPE as a government policy will at least lead to the creation of an Endometriosis Research Unit. Funding and other particulars must be allocated and so government’s critical role in this process cannot be overstated. The WHO states people have a right to health. This is not the reality for symptomatic endometriosis patients. Maxine Padia is unable to work a normal 8 to 4 Monday to Friday job due to the ridiculous pains of endometriosis. Government, it’s time! To facilitate the right to health! Develop a NAPE for TT.

 

How? There is no need to reinvent the wheel. There exists a few models that can inform a NAPE for TT. The Turnbull Government in Australia in 2018 developed the first NAPE focused on three priorities: awareness and education, clinical management and care, and research (www.health.gov.au). In 2020, the bipartisan House Endometriosis Caucus successfully doubled the US federal research funding for endometriosis. Congresswoman and chairwoman of the first-ever bipartisan House Endometriosis Caucus Abby Finkenauer explained “Endometriosis is under-researched and suffers from a lack of proven and effective treatments” (gonzalez-colon.house.gov ). January 2022, The Macron Government in France announced a national strategy for endometriosis explaining it is not a woman problem but a societal problem (endometriosis.org). The five areas in France’s strategy include strengthening the training of healthcare professionals, improving detection of the disease and fostering research and innovation. President Grant welcomes a national policy that provides optimum level of care and scholarships for medical students in minimally invasive gynaecologic surgery. Priya Heera-Soodeen, living 13 years with endometriosis, wishes a hysterectomy is no longer forced on women. The priorities for NAPE are similar. It’s time to design a NAPE with priorities for TT!It’s time for intervention by government to actualize, develop and implement a NAPE! It’s time symptomatic endometriosis patients are given a real opportunity to enjoy that right to health! It’s time government makes that investment in endometriosis care in TT!