Advocacy in Endometriosis
by Heather Guidone, BCPA, Program Director, Center for Endometriosis Care
Editor’s Note: The Endometriosis Foundation of Houston has invited guest bloggers to share their work, expert opinions, and thoughts with our endo community as a part of our Tea Talk Series. These "tea talks" cover a wide range of health topics meant to educate and inform our community. For more information, visit https://www.efhou.org/events.
“A riddle wrapped in a mystery inside an enigma” - (Ballweg; Wilson).
That’s how this incredibly complex, highly enigmatic disease has been referred to over the years - and rightly so.
Affecting an estimated 176 million individuals globally, endometriosis is characterized by the presence of endometrial-like tissue found in extrauterine sites (Kennedy et al., 2005; Klemmt et al., 2018; Freger et al., 2021; Saunders et al., 2021). The disease is a systemic, inflammatory condition about which so much still remains unknown: no prevention has yet been discovered, a definitive cure remains elusive, and the century-old debate on the conclusive cause(s) wages on. Unsurprisingly, endometriosis is also often subsequently called a ‘disease of theories.’
What most researchers and thought leaders do agree on is that the processes associated with endometriosis can lead to a multitude of body-wide symptoms and issues, which may become chronic for some. While varied, a constellation of pain and symptoms is very common among those struggling with the disease, ranging from bowel or bladder dysfunction to painful sex and lower back pain to disabling menstrual pain and infertility to non-menstrual abdominopelvic pain and much more. As a result, this multifaceted disease may require integrative, multidisciplinary care for effective long-term management. Unfortunately, many patients are often dismissed, ignored or minimized, and despite the very definition of endometriosis as a condition found outside the uterus, some still tend to focus on the womb as the source of the problem and relegate the disease to being ‘just painful periods.’ This can lead to long delays in diagnosis, subpar treatments, diminished outcomes, and repeated failed interventions.
Endometriosis can have negative influences on the physical, emotional, reproductive and sexual health, financial security, relationships, careers and academics, and much more of those affected - but it isn’t only the individual impacted: the direct and associated costs e.g., surgery, prescriptions, in and out-patient care, lost productivity, work absenteeism and presenteeism, etc. attributed to endometriosis have been estimated at nearly $70 billion in the USA alone (Soliman et al., 2018). The disease places a critical burden on our public health system, with costs similar to more well-known, better-funded conditions like Diabetes and Crohn’s, for example. In short: endometriosis is an incredibly costly disease...in more ways than one.
Unfortunately, the disease is also fraught with various disparities as well, from research shortfalls to the use of healthcare resources. Endometriosis research remains critically underfunded - as many female-dominant diseases are, with funding for male-dominated diseases coming at the expense of those primarily affecting females. While NIH funding did double for endometriosis in 2021 to $26MM (US House of Representatives), that is merely a raindrop in the ocean. Likewise, disparities exist at least in part as a result of inherent biases, and despite being the leading cause of gynecologic hospitalization, there is also completely disproportionate use of medical services based on whether a patient is in the private or public insurance sector (Fourquet et al., 2019). These major public health concerns have real implications on the real lives of countless individuals. So much so, in fact, that in their bipartisan initiative in partnership with EndoWhat?, Senator Orrin Hatch called endometriosis “nothing less than a public health emergency” and Senator Elizabeth Warren stated the disease is a ‘serious health condition we need to talk about, raise awareness of, and remove associated stigmas from.’
Looking through a public health lens towards advocating for endometriosis can ‘promote policies, systems, and overall community conditions that enable optimal health for all and seek to remove systemic and structural barriers that have resulted in health inequities, including those relative to poverty, racism, gender discrimination, ableism, and other forms of oppression’ (Centers for Disease Control). Simply stated: one’s income, education, or ability to access care should not put them at a disadvantage for timely diagnosis and
subsequent quality treatment of endometriosis. We can and must do better - and we can leverage the three Primary Core Functions to achieve the framework towards better: Assessment, Assurance and Policy Development. A collaborative effort between all stakeholders can help devise strategies to reduce burdens; improve coping; reduce associated disabilities; minimize suffering through quality care; and maximize health-
related quality of life for the endometriosis community...because a rising tide can lift all the boats.
Advocating for another and self-advocacy are also crucial to any efforts intended to facilitate better care - particularly our own. WE are our own best advocates, and by being engaged in our care, we are able to choose the best provider for us; be involved and informed in our treatment plans – or turn down proposed treatments; ask important questions; exercise our healthcare rights; and become empowered to gain control over the decisions and actions that affect our own health and well-being. When we use our own experiences to advocate
for (and educate) others, it not only helps someone else on their journey, but also makes it possible to achieve reduced diagnostic delays, improve access to quality, value-based care for all, improve policies and beltway advances that benefit the community, fund and promote meaningful, unbiased research into pathogenesis and possibly one day even prevention, and dismantle the persistent barriers to better care that so many continue
to face today.
On September 25th, I’ll be joining the Endometriosis Foundation of Houston to talk more about endometriosis and the Power of Patient Advocacy. We’ll discuss the far-reaching impact of the disease; delve into the persistent myths and misinformation that continue to surround endometriosis; review how timely, multidisciplinary care is critical to outcomes and the lived experiences of those struggling with endometriosis; and most importantly, how advocacy empowers patients and helps make positive changes to the way this disease is diagnosed, researched and treated. We hope you can join the conversation!
Heather Guidone, BCPA, Surgical Program Director, Center for Endometriosis Care
Join us on Saturday, Sept. 25, 2021 at 11 a.m. (CDT) to listen to Heather Guidone discuss all things endo advocacy--advocating for yourself as a patient and taking things a step further for the community.
Heather Guidone, BCPA is the Surgical Program Director of the Center for Endometriosis Care. She has focused on 'bench to beltway to bedside' efforts in endometriosis education, research, policy reform, patient-centered care and more for nearly thirty years, but most importantly, has also personally struggled with advanced endometriosis and infertility herself and brings a unique perspective to her professional efforts. Heather volunteers her time to many collaborative endeavors, serving as an Executive Board Member, Advisor, Editorial Board Member, Speaker, Scientific Abstract Reviewer, Advocate, Research Grant Reviewer and member of many Councils, Committees, Special Interest Groups and organizations. Heather has also contributed to countless books, articles and publications on endometriosis, pelvic pain and woman’s health, including most recently the landmark academic book, The Palgrave Handbook of Critical Menstruation Studies. She remains an engaged member of several professional organizations including the American Public Health Association, the Society for Menstrual Cycle Research and many others. As a Board-Certified Patient Advocate and disease educator, her focus remains on reducing diagnostic delays and fighting for access to early and effective treatments for all; collaborative network building among multidisciplinary providers; and ensuring stakeholder representation in order to improve outcomes for future generations.
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