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New federal government funding for miscarriage research and data collection is a welcome and long overdue step forward for the thousands of families impacted by pregnancy loss, writes Isabelle Oderberg.
Until this year, miscarriage – the most common of all pregnancy complication, which affects one in ten of the world’s women – had never been given dedicated federal budget funding.
Resilient and dedicated organisations and individuals who work to providing information, psycho-social support, medical services and medical research to the (up to) 150,000 Australian families a year that experience early pregnancy loss (some of them more than once) had faced chronic funding shortages for too long, considering the depth and breadth of people the issue affects.
Organisations that should have been partners were being pitted peers against each other in a funding hunger games, in a situation both unfair and untenable.
But when I examined other causes like stillbirth or endometriosis, that had achieved healthier levels of funding – all of which I have to point out are equally and justifiably in need of funding – they had something in common: a united, coherent, strategic voice, that could speak for the sector as a whole and outline varying priorities across service providers.
It is those examples of health-related, cross-sector sector groups pooling their efforts and coordinating their strategies that led to the establishment of the Early Pregnancy Loss Coalition (EPLC).
The Lancet released a series on miscarriage in 2021. For those of us advocating in this area, it was groundbreaking, calling for wholesale change at almost every level; from new models of care and new approaches to most importantly, a cultural shift away from silence that seemed to envelop miscarriage.
“Reviewing the evidence on miscarriage, however, shows that the low priority afforded to miscarriage has resulted in a deficiency of high-quality epidemiology, and trials for management and prevention that should be available to guide practice and guidelines,” the Lancet noted in the series’ accompanying editorial. “This is especially true in low-income settings, where most miscarriages happen.”
The editorial ended with an intensely powerful statement that had advocates like me, all over the world, cheering out loud.
“This Series should catalyse a major focus on miscarriage for the medical research community, for service providers, and for policy makers. The era of telling women to “just try again” is over.”
But do you know what happened?
Nothing.
Nothing happened.
Throughout the past decade, successive governments have made it clear that representative, umbrella and peak bodies that can advocate on behalf of a whole issue, outlining and prioritising cross-sector issues, is the preferred, more efficient and effective way to engage.
The book I worked on for over three years was the roadmap I knew could lead us to better care.
After its release, with my collaborators Associate Professor Jade Bilardi (Monash University) and Associate Professor Melanie Keep (University of Sydney), I set about establishing the coalition so we could present a united front to government.
Within just a few months, almost 15 organisational members had joined the coalition, as well as almost 20 policy advisors, representing a diverse and representative cross-section of the best minds in the space.
While I was working on organising in my own space, Assistant Minister for Health Ged Kearney, a former nurse, was working tirelessly from within government to address the extensive issues raised by misogyny in women’s health, chairing the newly established National Women’s Health Advisory Council and introducing initiatives around endometriosis treatments, pelvic pain clinics, LGBTIQ+ healthcare, research funding for women’s health outcomes and more.
The coalition’s engagement with Minister Kearney resulted in Australia’s first national miscarriage roundtable in Adelaide in October 2023, with almost 30 representatives from across the sector and country in attendance.
What was apparent at the roundtable was the consistent agreement across the space. For the most part, there was agreement around what was and is needed, both urgently and in the longer-term.
The EPLC put in a budget proposal to the Federal Government and this resulted in the first ever dedicated miscarriage funding in Australian budget history, valued at $9.5 million.
While the amount may seem small, this budget funding is a game-changer. In addition to emergency funding for support services and education, there’s funding for a scoping study on data collection. There is currently no miscarriage data collected in Australia (miscarriage referring to losses under 20 weeks gestation). Admittedly, there are challenges to collecting this data, because miscarriage is more difficult to track. Some patients will miscarry at home, in hospital, in a GP clinic or at work. Medical touchpoints vary (in the early days of pregnancy a patient can be under the care of a GP, a midwife, an OB, or may not have had contact with any medical practitioners to that point). Pregnancy tissue can be challenging to collect and scans often take place later at slightly later gestations.
This is why the government allocated funding in the budget to an AIHW scoping study for how the data can best be collected. Irrespective, it’s the lack of this data and the insights it would provide, that mean developing appropriate public health policy is challenging, to say the least. This is why the Lancet called for the data to be collected back in 2021 and why the Australian government is moving to address it.
We know that this package, small but mighty, is a downpayment on much more work that needs to be done, but it is a hugely important shift in culture for miscarriage to be recognised in this way.
The EPLC – now a registered charity – will not be the recipient of any of the funding announced by government in May.
In order for us to avoid being put in a competitive position with our members and to maintain a neutral, truly representative position in our talks with government, we will seek philanthropic support to fund our work, which includes inquiry submissions, advocacy, education and more, all of which has been done by our executive board, to this point.
While it’s been an incredibly busy 10 months, looking back over what we have achieved in such a short space of time fills me with excitement and energy for what we can achieve in the months and years to come. Watch this space.
Read more about the work of the EPLC at www.eplc.au.
Isabelle’s career in journalism spans two decades, working for newswires across Europe and Asia, she Australia’s first social media editor at Melbourne’s Herald Sun and her work has appeared in The Age/SMH, Guardian, ABC, Meanjin and elsewhere. Her first book is Hard to Bear: Investigating the science and silence of miscarriage. She is co-founder and chair of the Early Pregnancy Loss Coalition and mother to two living children and seven angel babies.
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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