Every day this month I have opened my social media to an ocean of yellow women’s surgical constellations and words of hope and frustration. It is Endometriosis Awareness Month, a useful time to reflect on what Australia has achieved in supporting women with the condition. And what we still need to do.
The national action plan for endometriosis was officially launched mid last year by the federal health minister, Greg Hunt. The government promised $4.7m towards implementing the priorities outlined in the plan. This consisted of a $2.5m grant program under the Medical Research Future Fund (MRFF), $1m for a steering group to oversee the plan’s implementation, $1m to educate GPs and health professionals about endometriosis, and $200,000 to Jean Hailes for Women’s Health for an awareness campaign for women.
In this first year of the post-plan era, we have certainly seen some action. The Endometriosis Advisory Group has been formed and operating, the EndoWise campaign for women was launched, and the National Endometriosis Clinical and Scientific Trials (NECST) Network has been formed, among other endeavours. However, it is not all positive news.
Researchers have been anxiously waiting for applications to open for funding from the promised $2.5m pool (one of the smallest amounts listed on the MRFF announcements page). Endometriosis research in Australia is a hive of activity. Researchers from several disciplines have been buzzing about forming collaborations, collating resources and drafting grant proposals ready for when applications open.
In March 2018, the Research Australia website stated: “$2.5m will be available for a targeted call for research on to the diagnosis and treatment of endometriosis.” In July, this was updated to “fund a targeted call for research; a national clinical trials network [NECST]; and an Australian collaborative research framework.”
In writing this piece and my everyday work as a public health researcher, I have spoken to several stakeholders – including members of committees instigated by the national action plan, who were unable to publicly comment on their proceedings – and all were unaware of if and when this money would be made available for research.
We (researchers) are ready to make our honey but we need the nectar. We just don’t know if there is any left and if we can have some.
When asked about the progress of the plan’s implementation, Janet Michelmore, from Jean Hailes for Women’s Health and a member of the Endometriosis Advisory Group, stated: “There were clear recommendations made in the action plan and the Department of Health and the health minister’s office are working through those. The advisory group is currently working with the department to action those recommendations.”
The Department of Health were not responsive to my request for comment on the progress of the plan at the time of publication.
I also contacted some of the endometriosis consumer and advocacy groups in Australia to get their perspective on how women felt about the national action plan. While women see the plan as a momentous step, they want evidence of how it is being actioned to result in meaningful improvement to their lives and the next generation of girls.
Lesley Freedman of EndoActive, who is also a patient community representative on NECST*, said: “It was wonderful that they [launched the national action plan] but we’re yet to see anything come out of it so far.” Freedman pointed out that a major barrier to progress was the lack of guidance given to each state government about how to implement a plan pitched at the national level.
Jessica Taylor, the president of the Queensland Endometriosis Association (QENDO) and chair of the Australian Coalition for Endometriosis*, said the plan was “a great initiative but it now needs funding attached to actually make a difference”.
Taylor wished she could be “more positive” about the plan but noted it was largely “big-picture stuff whereas a lot of girls [and women] need help now”.
“It falls back on the [consumer and advocacy] groups … we’re the ones on the ground making a difference.” QENDO, for example, recently took on the massive task of securing nongovernment funding to pilot a menstrual education program in schools, a need identified in the national action plan. This is in addition to their fundraising activities that support endeavours such as care packages to newly diagnosed girls and women.
The grassroots movement that cumulated in the national action plan was fuelled by the emotional, intellectual and physical labour of women with endometriosis. As a researcher, I am mindful it is largely because of this labour that my work is increasingly recognised and (hopefully) funded.
Women are entitled to medical care and policy that fosters their full social and economic participation. It is infuriating that, yet again, our society is forcing women to work for this.
While the national action plan for endometriosis is a fantastic start, we need to deliver on its promises. The aim of this plan is to improve the lives of women with endometriosis. The burden to do so should not fall on their shoulders.
Women are tired of waiting for a cure or the mythical drug that will remove their pain. Given the small amount of funding available, we must use it wisely to fund research that will help girls and women as soon as possible. Those on the ground – women and their supporters, doctors, researchers – witness this need every day.
It is my hope that next year’s Endometriosis Awareness Month will see me writing about how we are doing this.
* Lesley Freedman and Jessica Taylor were unable to comment on the proceedings of these committees. Taylor is also a patient community representative on NECST and a member of the Endometriosis Advisory Group.
• Kate Young is a research fellow in the School of Public Health and Preventive Medicine at Monash University
