Women’s health research in Australia has been given a record financial boost, paving the way for better diagnosis and treatment of a debilitating and historically ignored condition.
UNSW Sydney will establish the Ainsworth Endometriosis Research Institute, thanks to a record-breaking $50 million philanthropic donation by the Ainsworth family.
The world-first institute will help progress diagnosis and treatments, and improve the lives of people living with the disease.
Endometriosis is a condition where tissue similar to the lining of the uterus is found outside the uterus, causing severe pelvic pain, fatigue and in some cases infertility.
It is estimated to affect more than one million Australian women and girls and about 200 million people globally.
The institute will bring top scientists, clinicians, and philanthropists together from around the world to accelerate diagnosis breakthroughs and create precision-based treatments.
The funding is the largest known philanthropic donation by a family to endometriosis research globally and to women’s health in Australia.
The Ainsworth family earned their wealth through creating two of the world’s biggest poker machine manufacturing companies, Aristocrat Leisure and Ainsworth Game Technology.
They are also keen philanthropists, with the latest donation one of many to medicine, science and cultural institutions.
In Australia, the economic burden of endometriosis is estimated between $7.4 billion and $9.7 billion annually.
Lily Ainsworth and her mother Anna have both experienced the chronic pain and uncertainty that comes with the condition.
“Endometriosis and all its symptoms and repercussions are everywhere and yet we still don’t understand it,” Lily Ainsworth said.
“(The institute) is hope, it’s hope for those living with endo now, and it’s hope for all those little girls who are staring down the barrel of a life with endo.
“Living with endo in the future will be different to living with endo today.”
Many people with endometriosis endure years of symptoms without answers, waiting an average six to eight years for an accurate diagnosis.
Eimear McHugh, a nurse and endometriosis advocate, suffered for years with debilitating symptoms that were often dismissed by doctors as “normal”.
She had her gall bladder removed in a bid to treat her symptoms but it wasn’t until a gynaecologist investigated the possibility of endometriosis that she was able to address the illness.
“Aside from impacts on the physical effects of the symptoms, just getting an answer about what was causing them meant so much,” she told AAP.
“Anyone with endometriosis will agree that this validation is such an important part of managing the illness effectively.”
The institute aims to fast-track new understandings of the disease by focusing on genomic research, bio-repositories and advanced testing, led by scientific director Caroline Ford.
The gender health gap had been caused directly by a historical lack of funding and research into diseases and conditions affecting women, Professor Ford said.
“We cannot improve the lives of people with endo unless we invest in research,” she said.
“This (institute) is going to result in new avenues for early diagnosis, novel treatments and informed decisions regarding care.
“With this amazing investment we’re going to be able to unravel the complexity of this disease.”
Governor-General Sam Mostyn attended the announcement of the institute at the UNSW on Tuesday.
“It is indisputable that breakthroughs in diagnosis and treatment of endometriosis will have a broad and inclusive impact and will affect us all,” she said.
“The AERI is a significant step forward in breaking the generational silence and making the vital discoveries that will drive unprecedented progress in endometriosis.”
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