Record funding to support 800,000 women with endo and new genetic tests available
New specialised endometriosis and pelvic pain clinics will be established in every state and territory to improve diagnosis, care and treatment to support over 800,000 Australian women who have the disease, as part of the Morrison Government’s funding package.
Through the 2022-23 Budget, a record $58 million will be provided under the National Action Plan for Endometriosis to improve endometriosis diagnosis and primary care support, helping more women to find appropriate care and better manage the impact of endometriosis.
Endometriosis has a profound impact on around one in nine Australian women and girls. It is a highly individualised condition, with symptoms ranging significantly from person to person, but commonly impacting on family and social life, work and study.
Prime Minister Scott Morrison said this significant investment will address the need for more endometriosis awareness, treatment and support.
“One in nine Australian women suffer from endometriosis and this funding today will bring welcome relief and support through better diagnosis, treatment and care,” the Prime Minister said.
“I have seen firsthand with Jen just how debilitating endometriosis can be for women, the mental and physical toll it takes, and it’s so important we continue to fund new services and treatments for the hundreds of thousands of women who suffer from endometriosis.
“Our plan will improve the quality of life for women living with endometriosis, with record support, building on our National Action Plan for Endometriosis, so women of all ages can get diagnosed and be supported.”
The Morrison Government will also help couples plan for their pregnancy by investing $81.2 million to create a new Medicare item to support access to genetic testing for three serious genetic conditions.
Genetic testing can assist families who are planning for their pregnancy and may be at risk of passing on significant genetic conditions, to understand and assess their risk and to plan their pregnancy appropriately.
The new Medicare item builds on advances to date through Mackenzie’s Mission and will support universal Medicare funded testing to check if couples are carriers of cystic fibrosis (CF), spinal muscular atrophy (SMA), and fragile X syndrome (FXS), with the item available in 2023.
CF, SMA and FXS are the most common inheritable genetic disorders resulting in substantially reduced life expectancy within the Australian population.
This testing is presently available in Australia as a privately funded service and this measure will provide a Medicare rebate for genetic testing for CF, SMA and FXS.
Endometriosis initiatives include:
- $16.4 million to establish new specialised endometriosis and pelvic pain clinics in each state and territory and a nurse navigators pilot.
- $25.2 million to support women with severe endometriosis and other conditions that affect fertility to access a new Medicare funded magnetic resonance imaging (MRI) scan.
- $5.1 million to develop an Endometriosis Management Plan to support patients in primary care.
- $5.1 million towards the National Endometriosis Clinical and Scientific Trials Network and for early career researcher scholarships to continue growing research capacity and address research gaps.
- $2.5 million to transform and promote the Australian Clinical Practice Guideline for the Diagnosis and Management of Endometriosis into a “living guideline” that will be regularly reviewed and updated to reflect community feedback and the latest expert medical advice.
- $2 million to increase awareness and education of endometriosis amongst priority populations through the Australian Coalition for Endometriosis, a Mentor Program to support those newly diagnosed with endometriosis and a Workplace Assistance Program to support employees and employers to navigate discussions in the workplace.
- $1.4 million for the EndoZone digital platform, providing access to evidence-based information.
- $300,000 to promote access to the suite of Medicare Benefit Schedule (MBS) and Pharmaceutical Benefit Scheme items for diagnosis and treatment of endometriosis.>
Minister for Health and Aged Care Greg Hunt said increasing access to genetic testing would be a welcome relief for many parents and couples planning pregnancy.
“This will allow thousands of Australians to undergo genetic testing without huge out of pocket costs and enable them to see if they are genetic carriers of disorders like CF, SMA and FXS,” Minister Hunt said.
“As a passionate advocate for genetic testing, I am proud that the Morrison Government is making this significant investment, which will not only help Australians and their families, but ensure they know and understand the risks of inheritable genetic disorders.”
Member for Boothby Nicolle Flint said: “The Morrison Liberal Government is helping women and girls who suffer from endometriosis with education and awareness, clinical support, and research, and I could not be more proud of the Prime Minister's announcement today.
“Over the past four years our Government has delivered the first-ever National Action Plan for Endometriosis, record funding for education and awareness programs, clinical support and research.
“Today, we have announced even more funding and support for everyone affected by endo which will help change lives for the better.
“It was a huge shock to me to be diagnosed with Stage 4 endometriosis in early 2020. Endometriosis had stuck both of my ovaries and my fallopian tubes to my uterus, one of my ovaries was also stuck to my bowel, and there was a lot of endo on my bladder and my bowel. It took 3.5 hours of surgery to remove it.
“My diagnosis explained everything; my period pain that I thought was normal, my heavy periods, clotting, my terrible bowel pain and related bowel issues and more. I have an amazing team of medical specialists who have my pain and my symptoms under control and that is what we want for everyone who has endo.
“So as someone who lives with endo, I know that our announcement today will change lives, and help women and girls get the advice and support they need.
“I would like to thank our amazing volunteers and endo advocacy groups Endo Australia, Pelvic Pain Foundation, QENDO, Endo Active, and Endometriosis WA for their years of tireless work with me, with the former Member for Canberra Gai Brodtmann, Minister Greg Hunt and the Prime Minister. Without these incredible volunteers who are medical specialists, endo sufferers and advocates, we could never have achieved all we have in such a short space of time.”
The Morrison Government’s National Women's Health Strategy 2020–2030 has five priority areas; maternal, sexual and reproductive health, healthy ageing, chronic conditions and preventive health, mental health, and the health impacts of violence against women and girls – core issues affecting the lives and livelihoods of women and girls.
This significant investment builds on our Government’s commitment to implementing the National Women’s Health Strategy 2020–2030 and improving long term health outcomes for women and girls.