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), Associate Professor Mike Armour and Millie Mardon, from NICM Health Research institute, 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.” – Associate Professor 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” – Associate Professor 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.” – Associate Professor 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.” – Associate Professor 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
For media inquiries, interviews, or further information, please contact:
Tanya Cooke, ENZ CEO
Ph: 027 255 1306
About Endometriosis New Zealand:
Endometriosis New Zealand is Aotearoa’s national endometriosis organisation, we support thousands of women, girls and those assigned female at birth living with endometriosis.
We work to provide support, advocacy, research, information, education and awareness that empowers those living with endometriosis to take control of their condition and to feel heard. We are committed to research to understand the causes and impacts of endometriosis, especially to improve equity for Māori and Pasifika patients.
Our purpose is to improve the lives of those with endometriosis and help them find a way forward with hope and strength.
Endometriosis needs research
Endometriosis patients can experience a lot of debilitating symptoms including:
- Painful periods, sex, urination, defecation, and ovulation
- Bleeding and pain between periods
- Gastrointestinal distress
Endometriosis can affect sensations in the whole body and has been shown to significantly negatively impact patient quality of life. Symptoms of endometriosis also relate to heightened rates of chronic stress, anxiety and depression. Since pain signals are so frequent in the bodies of endometriosis patients, the threshold for pain signals can become reduced, causing non-painful signals to be translated by the brain into pain signals, increasing the suffering of patients.
In New Zealand, there is an average of 8.7 years from symptom onset to diagnosis. This diagnosis can only be confirmed by surgery to remove endometriosis and look at it under a microscope to confirm the identity. During the time in which endometriosis patients do not have a confirmed diagnosis, 3 in 4 will be misdiagnosed with a different disease that they do not have.
There is no unique symptom for endometriosis, there is no blood test, and endometriosis can only very rarely be seen using ultrasound or MRI imaging. This makes patients very reliant on access to surgery, which in New Zealand often means medical insurance is unofficially required.
Endometriosis patients have high healthcare needs, with endometriosis costing US patients $20,000 NZD annually, 3.5 times more than non-endometriosis patients, and then lose an average of over $26,000 USD with lost work time, and reduced quality of work. Longer delays to diagnosis of over 3-5 years (and New Zealand’s average is much higher than this) significantly increase the cost of healthcare for endometriosis patients by tens of thousands of dollars per patient.
*Endometriosis research receives disproportionately low financial support compared to other health conditions.
- In 2022, only $3.22 NZD of research funding per patient was allocated to endometriosis by the NIH, the largest health research fund in the world (Buck Louis et al. 2011; NIH 2022, 2020; Ellis, Munro, and Clarke 2022).
- Diabetes affects a similar proportion of women (and people assigned female at birth) as endometriosis, but the allocation by the NIH is 1565% higher for diabetes research per patient (Ellis, Munro, and Clarke 2022; CDC 2020; NIH 2022).
- Endometriosis and Crohn’s disease are both debilitating inflammatory diseases, but funding per patient for Crohn’s disease by the NIH is 480 times more than that for endometriosis (Ellis, Munro, and Clarke 2022; NIH 2022; Gajendran et al. 2018).
- If endometriosis research was funded at half the level of diabetes research, the funding allocated would increase almost 16 times over (Ellis, Munro, and Clarke 2022; NIH 2022).
- If endometriosis was funded at the same level as diabetes with respect to annual economic burden, NIH funding would increase to $504-$768 million, rather than the current $27 million (Ellis, Munro, and Clarke 2022; NIH 2022; American Diabetes Association 2018; Soliman et al. 2016; D’Hooghe et al. 2012).
- Between 2011 and 2014, only two of the 56 internationally selected research goals for endometriosis had been completed, in large part because of limited global funding (Rogers et al. 2017).
- Endometriosis lesions were first described over 100 years ago, but we still do not know enough about its cause (Nezhat, Nezhat, and Nezhat 2012; Brosens and Benagiano 2011; Wei et al. 2020).
- The first descriptions of the symptoms of endometriosis are in medical texts from 1500 BCE, but endometriosis is still incurable (Acién and Velasco 2013; Simitsidellis, Gibson, and Saunders 2018).
Acién, P., and I. Velasco. 2013. “Endometriosis: a disease that remains enigmatic.” ISRN Obstet Gynecol 2013:242149. doi: 10.1155/2013/242149.
American Diabetes Association. 2018. “Economic Costs of Diabetes in the U.S. in 2017.” Diabetes Care 41 (5):917-28. doi: 10.2337/dci18-0007.
Brosens, Ivo, and Giuseppe Benagiano. 2011. “Endometriosis, a modern syndrome.” The Indian journal of medical research 133 (6):581-93.
Buck Louis, G. M., M. L. Hediger, C. M. Peterson, M. Croughan, R. Sundaram, J. Stanford, Z. Chen, et al. 2011. “Incidence of endometriosis by study population and diagnostic method: the ENDO study.” Fertil Steril 96 (2):360-5. doi: 10.1016/j.fertnstert.2011.05.087.
CDC. 2020. “National Diabetes Statistics Report: 2020 Estimates of Diabetes and Its Burden in the United States.” In, edited by U.S. Department of Health and Human Services.
D’Hooghe, T., C. D. Dirksen, G. A. J. Dunselman, A. de Graaff, and S. Simoens. 2012. “The costs of endometriosis: it’s the economy, stupid.” Fertility and Sterility 98 (3, Supplement):S218-S9. doi: https://doi.org/10.1016/j.fertnstert.2012.07.791.
Ellis, Katherine, Deborah Munro, and Jennifer Clarke. 2022. “Endometriosis Is Undervalued: A Call to Action.” Frontiers in Global Women’s Health 3. doi: 10.3389/fgwh.2022.902371.
Gajendran, Mahesh, Priyadarshini Loganathan, Anthony P. Catinella, and Jana G. Hashash. 2018. “A comprehensive review and update on Crohn’s disease.” Disease-a-Month 64 (2):20-57. doi: https://doi.org/10.1016/j.disamonth.2017.07.001.
Nezhat, C., F. Nezhat, and C. Nezhat. 2012. “Endometriosis: ancient disease, ancient treatments.” Fertil Steril 98 (6 Suppl):S1-62. doi: 10.1016/j.fertnstert.2012.08.001.
NIH. 2022. “Budget.” Accessed 30/01/2022. https://www.nih.gov/about-nih/what-we-do/budget.
———. 2022. “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” In. https://report.nih.gov/funding/categorical-spending#/.
Rogers, P. A., G. D. Adamson, M. Al-Jefout, C. M. Becker, T. M. D’Hooghe, G. A. Dunselman, A. Fazleabas, et al. 2017. “Research Priorities for Endometriosis.” Reproductive sciences (Thousand Oaks, Calif.) 24 (2):202-26. doi: 10.1177/1933719116654991.
Simitsidellis, Ioannis, Douglas A. Gibson, and Philippa T. K. Saunders. 2018. “Animal models of endometriosis: Replicating the aetiology and symptoms of the human disorder.” Best Practice & Research Clinical Endocrinology & Metabolism 32 (3):257-69.
Soliman, Ahmed M., Hongbo Yang, Ella Xiaoyan Du, Caroline Kelley, and Craig Winkel. 2016. “The direct and indirect costs associated with endometriosis: a systematic literature review.” Human Reproduction 31 (4):712-22. doi: 10.1093/humrep/dev335.
Wei, Y., Y. Liang, H. Lin, Y. Dai, and S. Yao. 2020. “Autonomic nervous system and inflammation interaction in endometriosis-associated pain.” J Neuroinflammation 17 (1):80. doi: 10.1186/s12974-020-01752-1.