Lessons from implementing the Australian National Action Plan for Endometriosis

Abstract

Endometriosis is a common yet under-recognised chronic disease with 1 in 9 (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018 Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, co-ordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; firstly, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted “gold-standard” surgical diagnosis and single provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and magnetic resonance imaging incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare cost.

Endometriosis research priorities in Australia

“…Endometriosis affects around one in nine Australian women and those assigned female at birth by the age of 44, 1 with at least 830 000 people in Australia likely to be affected. Despite a prevalence greater than diabetes, 2 and a cost of illness burden of over 9.5 billion AUD per year, 3 historically there has been a significant disparity in the amount of funding and resources allocated in comparison to other conditions with similar prevalence 4 …”

“…Despite a prevalence greater than diabetes, 2 and a cost of illness burden of over 9.5 billion AUD per year, 3 historically there has been a significant disparity in the amount of funding and resources allocated in comparison to other conditions with similar prevalence. 4 In 2018 the Australian government established a national action plan for endometriosis 5 with funding allocated for a variety of goals including increasing awareness, educational programs, and research into early detection, causes, and effective treatments. In addition, organisations such as Endometriosis Australia have also independently raised funds for endometriosis research.…”

Epidemiology of Endometriosis Awareness in Turkey

“…Additionally, 66.9% of women diagnosed with endometriosis stated they had at least one more medical condition, which means additional costs. These results are in parallel with the endometriosis burden in the USA and Australia [23,24]. Thus, provisions in healthcare policies, insurance coverage, and business plans are urgently required.…”

Improving the diagnosis of endometriosis in Asia‐Pacific: Consensus from the Asia‐Pacific Endometriosis Expert Panel for Endometriosis

“…and it has been shown that coordinated efforts over time can substantially improve awareness among both the public and medical communities. 30,67,68 Such initiatives are always better served when quality data are available. Several important questions remain, especially in Asian populations.…”