Endometriosis New Zealand is taking a significant step forward in its mission to improve the lives of individuals affected by endometriosis by announcing plans to launch a Endometriosis Research Fund, set to open in 2024. This initiative comes in response to the pressing need- for enhanced research in the field of endometriosis, a complex and poorly understood condition that affects at least 1 in 10 women, girls, and those assigned female at birth in New Zealand.
“Improving funding for endometriosis research in New Zealand marks a pivotal milestone for our organisation” – Tanya Cooke, CEO of Endometriosis New Zealand.
Endometriosis New Zealand recognises the immense challenges faced by those living with endometriosis and is committed to advancing our understanding of endometriosis in line with the research priorities of patients.
To ensure that this fund aligns with the priorities and needs of endometriosis patients and their families/whānau, Endometriosis New Zealand has partnered with the University of Canterbury to conduct a comprehensive survey. This survey aims to gather valuable insights into the perspectives of individuals affected by endometriosis and will underpin the priorities of future research efforts within the Fund.
The survey is available now and the participation of individuals all across Aotearoa will be instrumental in shaping this fund: Survey Link
We sat down with Dr Michael Wynn-Williams, chair of Endometriosis New Zealand’s (ENZ) Clinical Advisory Committee (CAC), Dr Mike Armour fellow member of the ENZ CAC and Millie Mardon, postdoctoral researcher from NICM, Western Sydney University, and Dr Rachael Wood from the University of Canterbury to discuss this launch (headshots attached). We have summarised the themes of this discussion below:
Endometriosis is a disease with no cure that has huge impacts, on physical, psychological, and social well-being, but also patient quality of life, work, education and finances. Endometriosis and women’s health in general have always been significantly underfunded.
“Endometriosis is also a very expensive disease – both for individuals and for society more broadly. Endometriosis, and women’s health research in general, has always been significantly underfunded. It receives considerably less funding to other common conditions, such as asthma and diabetes, despite affecting similar numbers of people… Generally conditions that are “women’s’ health” related receive less attention and funding than those that affect men as well.” – Dr Mike Armour and Millie Mardon
“Endometriosis research receives disproportionately low funding compared to other conditions of similar prevalence”- – Dr Michael Wynn-Williams.
Endometriosis is a serious, unmet healthcare concern, with interventions that can be expensive, have significant side efforts and/or not be very effective. This creates a serious need for new methods of diagnosis and treatment.
“This means there is an urgent need to research new ways of treatment, and new ways of improving diagnosis, so that we can shorten the time it takes to get a diagnosis but also make sure once we have one, we have effective treatment options.” – Dr Mike Armour and Millie Mardon
“Here in New Zealand at least 1 in 10 woman (and AFAB) are having to deal with a chronic pain condition that has no cure and we are in a position where we need to do something about it. In order to learn more about this disease so we can make progress towards better treatments and hopefully one day a cure, we need research funding.” – Dr Rachael Wood
New Zealand-Specific Research is important
“Most existing endometriosis research is from overseas… it’s time we invest in more New Zealand-specific research including studies that focus on the experiences of Māori and Pasifika communities. Our unique environment, culture, and challenges demand tailored solutions. By prioritising this, we not only can begin to address our specific needs but also contribute to the global knowledge pool in a meaningful way” – Dr Michael Wynn-Williams.
Without research funding, research does not happen, and researchers are less able to work on endometriosis-related projects.
“Research funding is critical for conducting research. Without funding, research simply cannot occur… Without research funding, many questions about endometriosis will remain unanswered” – Dr Mike Armour and Millie Mardon
“You can have the best idea in the world, but if no one else buys into your idea and is willing to provide money to make it happen, it will stay on the dream slate.” – Dr Rachael Wood
Research funding is required for researcher salaries, project costs, equipment, technology, infrastructure, travel costs, and publishing papers.
“Research costs money from everything between paying salary, to incentives for patients, to lab supplies, to travel costs, and even to publishing papers… Reliable research funding that is focused on endometriosis allows researchers to create and build upon a continuous knowledge base. It means that research into complex diseases like endometriosis will gain traction which should lead to more discoveries being made.” – Dr Rachael Wood
Researchers need research funding to be able to progress their research, and even stay employed.
“Researchers are generally expected to bring in funding, run research and then publish their findings. Without research funding, none of this can occur… [Having research funding] means that we will be less likely to lose talented researchers to other areas due to lack of funding.” – Dr Mike Armour and Millie Mardon
“If you don’t get research funding, you don’t get to explore all these cool ideas you have that you think can change the world… More practically, without research funding, you can’t publish. If you don’t publish, you don’t get promoted. Also if you don’t publish, you are less likely to get grants and your career stagnates.” – Dr Rachael Wood
Patient-centred research is vital to making progress in endometriosis.
“[Having patient-centred research priorities] ensures the research being performed is meaningful and will have a big impact on people living with a disease. People with endometriosis are experts in their own right and provide valuable insights into their experiences and how research funding can be utilised to their greatest benefit.” – Dr Mike Armour and Millie Mardon
“Bring them in from the beginning as they have the best insight as to what is working and what isn’t. They will let you know what changes need to be attacked to have the largest impact which is where you tend to want to start… You can throw money at research, but unless you are embedding it in solid science and patient and clinical perspectives, it honestly may as well not have happened.” – Dr Rachael Wood