Australia's first National Action Plan on endometriosis: Progress but still a long way to go

With 11.4% of women, girls and the gender-diverse community affected,1 endometriosis is a major contributor to morbidity globally. Australia is 80% of the way through the first five-year National Actional Plan on Endometriosis (NAPE), launched in 2018.2 There has been substantive progress made, including then federal minister for health, the honourable Greg Hunt MP, apologising to all those with endometriosis for taking so long to recognise the disease and providing a co-ordinated national approach. The NAPE recommended three key directions: (i) awareness and education, (ii) clinical care and (iii) research. A priority list was published, and recommendations were made for how the NAPE would be implemented and what constituted measures of success for the plan. The overarching aim of the NAPE is ‘A tangible improvement in the quality of life for individuals living with endometriosis, including a reduction in the impact and burden of disease at individual and population levels’.2 Of the 69 articles published on endometriosis in ANZJOG (The Australian and New Zealand Journal of Obstetrics and Gynaecology) since 1996, over half are in the past ten years. The increased interest and focus on endometriosis as a major gynaecological disease and factor in pelvic pain, infertility and generalised symptoms is widely accepted. Notably, there is a move away from the ‘disease’ in earlier ANZJOG publications and response to medical or surgical treatments to more recent publications that focus on the limitations of current treatments, the psychological impact of endometriosis and chronic pain on the individual and workplace practices. In this virtual edition, we see the first discussions of the use of Lipiodol as a possible treatment for endometriosis-associated infertility3 to the randomised controlled trial (RCT) on this same subject over a decade later.4 Similarly, early larger series of bowel resections with impact on quality of life and fertility5 have been followed up by RCTs on specific bowel surgical techniques.6 The role of imaging, particularly ultrasound, has been discussed frequently, with specific methodologies highlighted for deep endometriosis,7 staging disease preoperatively to recommend the most appropriate surgical team8 through the complexities of diagnosis of early disease without surgery.9 The activity of endometriosis research in Australia has increased temporally. This is reflected in ANZJOG publications and, importantly, has resulted in greater financial support at the national level. The federal government has invested more than $8.5 million overall on awareness and education, including EndoZone – a digital health platform with resources for patients, families and clinicians. Additionally, the Pelvic Pain, Endometriosis and Periods (PPEP) talks that target school-aged boys and girls to talk about pelvic pain, endometriosis and periods are also focused on education, a vital link to early diagnosis. Clinical care in endometriosis has received some $25 million in funding, with the majority of that to fund a new Medicare Benefits Scheme (MBS) service for magnetic resonance imaging (MRI) of endometriosis. There is also funding to support primary care centres for endometriosis-specific services. Other notable supports include a clinical tool to aid diagnosis of endometriosis – the raising awareness tool for endometriosis (RATE) available on the RANZCOG (Royal Australian and New Zealand College of Obstetricians and Gynaecologists) website – and the first iteration of the Australian Endometriosis Clinical Practice Guideline10 to both provide evidence-based statements on care and importantly highlight evidence gaps where more information is needed to improve that clinical guidance. The federal government has recently funded RANZCOG to create a living guideline so that changes in evidence may be rapidly incorporated into the document for dissemination and practice. Research funding for endometriosis in Australia has never been greater, with over a dozen nationally funded studies underway, including a national registry – the National Endometriosis Clinical and Scientific Trials Network registry, with more than 1200 registered participants to date.11 Of course, many of the projects that have been currently funded will take time to reach the pages of the journal. In this final year of the first NAPE, it is clear that not all goals have been achieved. However, it is imperative to note that it was unlikely that we would have been able to reach all of the aims of the NAPE in such a short time frame. What we must do is continue to lobby for a second NAPE and to continue the excellent progress that has been made with a groundswell of support from those with the disease, their families and clinicians. ANZJOG has been a long-term conduit for the dissemination of research in this space to clinicians and will continue to do so. Australia and New Zealand have always been the vanguard of scientific and clinical research in endometriosis and are strengthened with continued funding, networking and a framework in the NAPE. ANZJOG's publication record in endometriosis continues to be strong and has helped ease the morbidity burden and improve our understanding of the disease.