Bench to Beltway to Bedside: Advocacy for Endometriosis

The Endometriosis Summit: Patient & Practitioner Town Meeting Program 'Bench to Beltway to Bedside: Advocacy for Endometriosis' is approved for 2 CEs by the Patient Advocate Certification Board to satisfy the requirements for Board Certified Patient Advocates (BCPA). Program Approval Code 18173. This activity meets Competencies and Ethical Standards in the following Professional Advocacy domains:

• Medical Knowledge and the Healthcare System.
• Communication and Interpersonal Relationships.
• Healthcare Access, Finance, and Management.
• Professionalism, Professional Development, and Practice.
• Empowerment, Autonomy, Rights, and Equity.

Objectives:

• Understand vital role of Advocacy in reducing delays in diagnosis, improving outcomes, clinical research, and increasing public awareness for endometriosis.
• Characterize critical importance of multidisciplinary collaboration with gynecologists, pelvic floor Physical Therapists, pain specialists and other disciplines to optimize timely, effective care and treatment for endometriosis and related pain generators; and Navigate practitioner, community, employer, research, legislative, support, and advocacy resources to enhance patient experiences and outcomes.

Roots of Patient Empowerment in Endometriosis: Advocacy for a Significant Personal & Public Health

Presented to The New York State Public Health Association

Objectives:

• Define endometriosis as systemic, inflammatory disease with tremendous personal and public impact;
• Describe critical need for timely diagnosis and early, effective intervention.
• Identify endometriosis as priority public health issue; and
• Evaluate advocacy strategies to empower patients and address burden of endometriosis through a public health lens.

Endometriosis: Pain, Politics, Public Health & the Power of Patient

Presented to the Society of Menstrual Cycle Research

Endometriosis is a tremendous public health burden with vast personal, societal and political costs and implications. Notable 'patient as partner' collaborations with legislative, clinician, research, and media advocates are helping to elevate the disease. The process of 'breaking the silence' has repositioned the 'illness experience' narrative to that of an 'illness activist' and allowed the community to start reclaiming sense of agency and empowerment.

Summary Abstract:

Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found in varied locations of the body. Affecting approximately 190 women, girls and gender-diverse individuals globally, the disease can result in a multitude of systemic issues ranging from chronic pain and inflammation to organ dysfunction and more. Endometriosis has the capacity to negatively impact daily life, education, career, relationships, and sexual, physical, and mental health.

Awareness remains poor throughout the public and healthcare professions alike; as a result, patient frustration, substantial diagnostic delays, and poor information systems continue to impact research, diagnosis, and equal access to quality care. Though often mistakenly perceived as 'painful periods', endometriosis goes far beyond the pelvis and its impact is not limited to merely 'menstrual difficulties and infertility among middle-aged women'. The disease is frequently diagnosed in teens and adolescents, and can be found in non-menstruators, those without a uterus i.e., post-hysterectomy, among post-menopausal individuals, and even in rare cis males and at fetal autopsy. Association with various co-morbidities is common, with increased rates and risks of certain gynepathologies, select autoimmune conditions, fibromyalgia, coronary heart disease, stroke, some cancers, adverse obstetrical outcomes, and more found among those with the disease.

Endometriosis remains fraught by formidable, unmet gaps and challenges, with many clinicians and society at large unaware of its potentially damaging effects on quality of life, sexual function and general welfare. Yet data from all major countries demonstrates that endometriosis is a costlier public health problem than more familiar conditions like migraines and Crohn’s and is on par with public health burdens such as Type II Diabetes and Rheumatoid Arthritis. Current estimates for the direct and indirect costs i.e., surgery, prescriptions, productivity loss, work and school absenteeism/presenteeism and more are staggering, estimated at nearly $70 billion annually in just the United States alone. Affecting predominantly those assigned female at birth, endometriosis also remains a poorly funded research area, as with other female-dominant diseases.

In an effort to address the multitude of barriers that have long resulted in lack of access to timely, multidisciplinary care for all, to increase research funding, and to develop better disease-related policies, it is largely patients across the international endometriosis community who have historically driven requisite changes. Through the lens of a three-decade professional endometriosis educator, activist, and advocate, this session will review how patient efforts have evolved to position the disease as a priority public health platform.

Objectives:

• Review notable collaborations with like-minded political, clinician, research, and policy advocates who have joined efforts over time to achieve strides in the ways the disease is diagnosed, researched, and treated.
• Classify endometriosis as a tremendous public health burden and articulate goals towards developing and improving upon existing programs and policies to address persistent disparities and increase funding appropriations; and
• Evaluate the collaborative process of 'breaking the silence' to reposition the 'illness experience' narrative to that of an 'illness activist'.

Endometriosis: 'A Riddle Wrapped in a Mystery Inside an Enigma'.

Objectives:

Define endometriosis correctly as systemic, inflammatory disease with tremendous personal and public health impact; Discuss critical importance of interdisciplinary collaboration to optimize timely, effective diagnosis and treatment; and Describe vital role of Public Health Advocacy in reducing delays in diagnosis, improving clinical research, increasing public awareness, and enhancing lived experiences.

Advocacy for Endometriosis & Chronic Pelvic Pain

Presented at the International Pelvic Pain Society 24th Annual Scientific Meeting

Objectives:

Understand vital role of the Professional Advocate in reducing delays in diagnosis, improving outcomes, clinical research, and increasing public awareness for endometriosis and associated Chronic Pelvic Pain (CPP).

Characterize critical importance of multidisciplinary collaboration with gynecologists, pelvic floor Physical Therapists, pain specialists and other disciplines to optimize timely, effective care and treatment for endometriosis and related CPP; and navigate practitioner, community, employer, research, legislative, support, and advocacy resources through a public health lens to enhance patient experiences and outcomes.