Prof. Alan Trounson, AO

Women’s health has suffered long-term disappointments in targeted research and the key funding that needs to be committed to making progress at the level we should expect. Ovarian cancer and endometriosis are two critical women’s health issues with devastating effects and neither has attracted the attention of significant resources to make acceptable progress in therapeutic options. Despite their widespread impact, both conditions face a significant lack of funding, research, and treatment options¹. Why this is the case, is difficult to answer.

Ovarian cancer is a group of complex and rare cancers with one of the lowest survival rates in Australia². It is generally diagnosed at an advanced stage because women accept pelvic pain as a normal situation, early diagnostic tests are unavailable and as a consequence regular screening for ovarian cancer doesn’t happen. Ovarian cancer is considered a “cold cancer” because of the dispersed tumours in the pelvic cavity and reduced blood supply to these tumours. This has made it more difficult to target with small molecules and immunotherapies. Being difficult is not a reason to not focus on this cancer, the lack of effective therapy should be a strong driver. Notably despite progress broadly in understanding and treating cancer, the present 5-year survival rate for ovarian cancer is lower than the 5- year average survival rate observed for all cancers in 1975.²

Endometriosis occurs in 1 in 7 females and those assigned female at birth, or 14% of girls and women in Australia are now estimated to live with endometriosis, up from 1 in 9 and 11%³. It is a condition that has happened because of frequent menstruation.  In evolution, there wasn’t selection against this happening because menstruation was a rarity as women were either pregnant or lactating, most of their fertile life. Endometriosis occurs when uterine endometrial cells back-flow into the pelvic cavity and grows ectopically without the possibility of being shed from the body as in menstruation. Endometrial tissue can also grow in the uterine muscle layer and is known as adenomyosis. Both conditions are associated with pain and infertility. Aside from surgery and heavy steroid therapy, there are no treatments available. Endometriosis is also associated with an increased incidence of cancer^4,5 and is possibly related to the elevated mutational burden noted in endometrial tissue, ranging from 209 to 2833 base substitutions per woman, many in oncogenes⁶. Endometriosis should be controlled where possible. Economic and healthcare costs associated with endometriosis have not adequately addressed, it affects a significant portion of women and yet remains severely underfunded.

 

Ovarian Cancer: A Grim Reality

Despite available information on the outcomes of diagnosing ovarian cancer, there are many obstacles for developing effective therapies. Ovarian cancer remains one of the leading causes of cancer related deaths in women in Australia, is the most lethal of the gynaecological malignancies and predicted to increase by 42% and deaths increase by 55% by 2040⁷. The ugly reality is that 80% of patients present for diagnosis are in stage III stage IV, and their 5-year survival rate is 27% and 13%, respectively^8-10. This is not acceptable. Ovarian cancer research is underfunded, the patients have very limited access to precision medicine, recurrence rates are 70-80% and there are very few targeted therapies. Patients can be often misdiagnosed because gender bias misattribution of symptoms. The consequences of later diagnosis are prolonged suffering and poor outcomes.

 

Endometriosis: A Neglected Crisis

Endometriosis is extraordinarily widespread, affecting 5-15% of reproductive age women worldwide. The prevalence is 31% of women with infertility and 42% among women with chronic pelvic pain. In Australia alone, endometriosis costs $21-$23 million in healthcare costs and lost productivity every day¹¹. Again, women face significant delays in diagnosis, with symptoms misattributed to other causes leading to worse symptoms, complications and increased risk of cancer.

The high association with infertility increases the stress among women and the need for treatments such as IVF. The presence of endometriosis may interfere with ovulation, cause painful adhesions and lead to endometrioma (cysts) that can be painful and disruptive of infertility. Adenomyoma is not easily treated and can be associated with pain, excessive bleeding, infertility and lifestyle disruption. Despite the high prevalence and economic costs, funding for endometriosis research is minimal compared to other health conditions.¹²

Treatments include conservative surgery, pain medicine, hormone therapy such as – contraceptives, gonadotrophin releasing hormone agonists and antagonists (lowers oestrogen levels), progestin therapy (blocks ovulation and menstruation) and aromatase inhibitors (lower oestrogen). None of these will eradicate endometriosis and many have unacceptable side-effects. The situation and genuine treatment options are desperately needed to control endometriosis.

 

The Need for Change

Significant investment is needed in research and therapeutic options for these underfunded conditions that are significantly affecting the lives of women. There is some interest in chimeric antigen receptor (CAR) driven immunotherapies, but the demanding development and regulatory costs are resulting in therapies similar to those treating blood cancers to be prematurely tried instead of addressing the more complex solid tumour microenvironment that inhibits therapies and the host’s own immune capacity to deal with cancer.

Companies like Cartherics are developing complex therapies that can effectively target solid tumours such as ovarian cancer. It seems that similar products may also control endometriosis or even adenomyosis. It is possible that these products can be inhaled, and that continued development may enable patients to have access to such products themselves for the ongoing control of conditions such as endometriosis. It is a matter of good research, time, investment and determination to deliver these outcomes for patients. This is all necessary and should include academia, medical research institutes, companies, government and the community. Alignment of effort is critical and must be achieved. We must improve survival rates and quality of life with the necessary focus on outcomes. Simply encouraging only one or other of these necessary components will doom the pipeline to failure. We support early detection of these serious conditions, we need to address the gender bias that exists, prioritise women’s health and well-being and improve the economic participation of women in the workforce and reduce the healthcare costs for these treatments in the long term.

The Government has a pivotal role in changing this priority in favour of women’s health and they should create more opportunity to engage industry, academia and medical research institutes with the patient advocate community to ensure this happens. Australia has the capacity to lead the world as it did in human IVF but there needs to be clear direction and resources for this to happen.

 

 

References

1. Business Case for the Gynaecological Cancer Transformation Initiative: https://d3bl05rey995a3.cloudfront.net/f98bd4531715a7fa34caabbb263eb8fd.pdf
2. State of the Nation in Ovarian Cancer: Research Audit: 2020. Accessible at: https://www.ocrf.com.au/about-us/annual-reports-publications/state-of-the-nation-in-ovarian-cancer
3. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia-2023/contents/how-common-is-endometriosis
4. Bogani G., Chiappa V., Raspagliesi F., Corso G. Endometriosis and cancer risk. Eur J Cancer Prev. 2025; 34:276-8.
5. Guidozzi F. Endometriosis-associated cancer. Climacteric. 2021; 24:587-92.
6. Moore L, Leongamornlert D, Coorens THH, et al. The mutational landscape of normal human endometrial epithelium. Nature. 2020; 580:640–6.
7. https://www.mja.com.au/journal/2024/220/5/screening-and-prevention-ovarian-cancer
8. Menon U, Gentry‐Maharaj A, Burnell M, et al. Ovarian cancer population screening and mortality after long‐term follow‐up in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial. Lancet2021; 397: 2182‐
9. Menon U, Gentry‐Maharaj A, Burnell M, et al. Tumour stage, treatment, and survival of women with high‐grade serous tubo‐ovarian cancer in UKCTOCS: an exploratory analysis of a randomised controlled trial. Lancet Oncol2023; 24: 1018‐
10. Cancer Research UK. Ovarian cancer survival statistics [website]. London: Cancer Research UK, 2018. https://www.cancerresearchuk.org/health‐professional/cancer‐statistics/statistics‐by‐cancer‐type/ovarian‐cancer/survival#heading‐Three(viewed Jan 2021).
11. Armour M., Avery J., Leonardi M., et al. Lessons from implementing the Australian National Action Plan for Endometriosis. Reprod. Fertil. 2022; 3:C29-C39.
12. Swift D. Endometriosis: Why is research funding so low. MedPage Today 26/3/2025, 2:08pm