Why Australia needs a second National Action Plan for endometriosis 

A second National Action Plan for Endometriosis is vital to help improve care and the quality of life for women with this condition.

Endometriosis is a common, chronic gynaecological condition affecting 11.4% (830 000) of Australian women, girls and transgender and gender-diverse people or an estimated 176 million worldwide.

In 2018, the then Minister for Health, the Honourable Greg Hunt MP, apologised for the lack of recognition for people suffering from endometriosis and proposed a coordinated, national approach. The blueprint for this was the first National Action Plan for Endometriosis (NAPE). Since that time, the United Kingdom, Canada and France followed our lead and developed their own national action plans. In Australia, the NAPE has led to a further 23 National Action Plans developed in other diseases and chronic conditions.

The NAPE was developed from partnerships between government, endometriosis experts, and endometriosis patient and community organisations. It identified a need for raised community and health care provider awareness to improve visibility and diagnosis of endometriosis. Action and priority items are recommended across three key areas: i) awareness and education, ii) clinical management and care, and iii) research.

We are now into our fifth and final year of the first NAPE and we need a second one. Why, you might say? Endometriosis has been neglected for so long compared with other diseases with similar disease burden (here and here), it will take us more than five years to catch up.

We have made substantive progress. The Australian Government committed $87.2 million in endometriosis-specific funding (here), although still less than allocated for comparable disease from traditional sources. There remains much more to do.

Awareness of endometriosis in the community and on social media has never been higher. More than $8.5 million has supported targeted education initiatives and campaigns to improve community and health care provider awareness, and education for patients and their families. This includes:

• the Endo Wise campaign created by Jean Hailes for Women’s Health;
• Endometriosis Shared Perspectives video series from EndoActive;
• EndoZone, a digital health platform providing responsive resources; and
• the Pelvic Pain, Endometriosis and Periods (PPEP) Talk Year 10 boys and girls school program.

Over $49 million have been allocated to improve clinical outcomes and health care access to services, which include:

• Medicare funding for magnetic resonance imaging scans of endometriosis before surgery;
• unit of study for Australian nurses and midwives;
• the Raising Awareness Tool for Endometriosis (RATE) – a online clinical tool helping health professionals and patients identify and assess for endometriosis symptoms; and
• the first Australian Endometriosis Clinical Practice Guidelines for all clinicians who care for people with endometriosis, with the Royal Australian and New Zealand College of Obstetricians and Gynaecologists receiving extended funding to implement a living guideline document.

There are two new primary care initiatives only just established with outcomes as yet unknown, with 20 Endometriosis and Pelvic Pain Clinics across all Australian states and territories commencing. The other is the Endometriosis Management Plan, helping patients and health care providers navigate and manage endometriosis and associated symptoms.

The final pillar of the NAPE is endometriosis-specific research, with more than a dozen projects and over $29 million invested from traditional and targeted funding. These include:

• the HAPPi Study, a randomised controlled trial into yoga, cognitive therapy, and education;
• efficacy of a low FODMAP diet;
• LongSTEPPP, a longitudinal study of adolescents with endometriosis and period and pelvic pain;
• Endometriosis DIT, endometriosis diagnosis, innovation and treatment;
• GELLES, genetic variants, early life exposures and longitudinal endometriosis symptoms;
• Imagendo, diagnosing endometriosis with imaging and artificial intelligence;
• EndoAIMM, earlier diagnosis and personalised treatments for endometriosis;
• role of and translating endometrial stem/progenitor cell discoveries in endometriosis (here);
• decoding the pathophysiology of chronic pelvic pain associated with endometriosis and related visceral comorbidities (here);
• EndoLinked, a data linkage study investigating the impact of endometriosis on fertility;
• harnessing the protective effects of interferon-ε as a therapeutic for endometriosis (here); and
• identifying endometriosis risk and disease variability by mapping endometrial stem cell maturation (here).

Nearly all of these projects continue to recruit and follow up patients, with their outputs not yet realised or integrated into care.

Not only has the funding bee fruitful, the collaborations have never been more collegiate. Demonstrated by the establishment of the National Endometriosis Clinical and Scientific Trials (NECST) Network – one of Australia’s leading research collaborative network of clinicians, allied health practitioners, scientists, researchers, patients, and policy makers; who also developed Australia’s first clinical registry on endometriosis (NECST Registry), which is collecting prospective and longitudinal health data.

This has further spawned the establishment of smaller linked networks:

• the Australian Endometriosis Alliance, dedicated to the discovery and development of diagnostics and treatments;
• the Australian Endometriosis Clinicians Collaborative (AECC), assessing outcomes of imaging accuracy and medical versus surgery treatments and establishing a national endometriosis biobank for future research capacity; and
• the Australasian Interdisciplinary Researchers in Endometriosis (AIRE) – a group of early and mid-career researchers with backgrounds in allied health and complementary therapies, medicine, nursing, biological and social sciences, and epidemiology.

What’s more, at the recent 15th World Congress on Endometriosis (WCE) in Edinburgh in May 2023, Australia was incredibly well presented with 17 oral and 32 poster presentations, from over 600 abstracts submitted for consideration.

Australia was the toast of the town at this most recent WCE – further cemented by the fact that Sydney will have the privileged honour of being the hosts for the next WCE in 2025.

But, as we move through our final year of the first five-year NAPE, what does our report card reveal? How are we stacking up against NAPE’s measures of success?

The NAPE proposed six criteria to review our five-year progress, these are:

1. development of a nationally endorsed endometriosis Australian Clinical Care Guidelines;
2. provision of improved access to appropriate health care, including assessment, diagnosis, pain management, psychosocial support, and specialist services;
3. implementation, and embedding, of a school menstrual education program, with increase in students’ knowledge and awareness;
4. demonstration of an increase in the base-level understanding of endometriosis among GPs, other health care professionals, employers and the community;
5. availability of optimal care pathways, from first consultation to surgical intervention and post-operative care; and
6. demonstration of significant expansion of the domestic research program, with a view of meeting international endometriosis research priorities.

For all of the criteria above, we can emphatically say that we have commenced all of the programs and activities to meet the objectives of the NAPE. However, what is also clear is we haven’t yet completed these objectives or been able to evaluate their effectiveness. The coronavirus disease 2019 (COVID-19) pandemic put a spanner in everyone’s plans for a while and meant the NAPE timeline was also somewhat buckled.

A second NAPE (or at least extension of the first) is critical to maintain momentum and ensure quality assessment and integration within endometriosis care. This will allow the fruits of our labours to be realised not only in the short term but lead to sustained, patient-centred, and clinically relevant improvements into the future for generations to come.

The inaugural NAPE has established an outstanding and solid base for which results and outcomes will be realised. Endometriosis has been a long-neglected disease whose prevalence is similar to diabetes and asthma, yet it receives a fraction of the funding and attention. That has started to change with a strong consumer voice and collaboration between clinicians and scientists with those patient groups. With continued investment and focus, we can deliver improved health care and quality of life for people with endometriosis.

Cecilia Ng is a Scientist Researcher at the Division of Obstetrics and Gynaecology, in the School of Clinical Medicine, at UNSW Sydney.

Gita Mishra is a Professor of Life Course Epidemiology at the School of Public Health at the University of Queensland.

Grant Montgomery is a Professorial Research Fellow at the Institute of Molecular Bioscience, University of Queensland.

Jason Abbott is Professor of Obstetrics and Gynaecology at Division of Obstetrics and Gynaecology, in the School of Clinical Medicine, at UNSW Sydney.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated. 

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