The Australian government has launched a national action plan for endometriosis, in an effort to advance treatments as well as improve understanding and awareness of the disease among healthcare professionals and the general public.
Health Minister Greg Hunt, in making the announcement following a meeting with representatives of the Australian Coalition for Endometriosis (ACE) and Parliamentary Friends for Endometriosis Awareness, apologized to women that not enough has been done, according to an article in The Guardian.
“As a woman who has lived with the pain of endo since I was 11 years old, being in that room full of men and women sharing their horrific endo stories and then watching Greg Hunt as he told us he’s sorry for the pain we’ve had to endure and that he apologizes that nothing was done sooner was unbelievably powerful,” said Sylvia Freedman, founder of EndoActive and member of the ACE.
Although this is a big step toward better awareness and treatment of endometriosis in Australia, Freedman — an endometriosis advocate who organized the meeting — told ABC News that her goal was to add the disease to a list of national priorities that currently includes cancer, dementia and cardiovascular health.
“Endometriosis is just as prevalent, if not more so, and just as costly to the Australian economy and women and their families if not more so than the other priorities already on that list,” said Freedman. “Endo affects one in 10 women, and yet, most people have never heard of it.”
She added that school curricula don’t even mention menstruation, let alone endometriosis; this causes many young girls to go on for years thinking they must simply live with their condition. She also said the lack of knowledge among healthcare professionals is shocking.
Some doctors, she said, have advised girls as young as 11 to get pregnant to cure the condition, or get a hysterectomy.
“The misinformation from healthcare professionals has got to change,” she said.
At the meeting with Hunt, ACE made five demands, according to The Guardian. Besides adding endometriosis to the list of national health priorities, the group lobbied for a federally funded public awareness campaign, more research funding, school education on the topic and the development of clinical care standards.
In its announcement of the action plan agreed upon as a result of the meeting, Hunt applauded the coalition’s work.
“This condition should have been better acknowledged and acted upon long ago, but today we are taking action so the struggle that women face will no longer be silent or their battles private,” Hunt wrote.
While the action plan announcement did not provide details of what actions women with endometriosis should expect, the government said it will work with the medical community and key stakeholders to explore potential gaps in “training, support and care.”
Among other things, the government will award A$160,000 in funding to Dr. Grant Montgomery, a professor at the University of Queensland who explores the use of genomics to identify better treatments for endometriosis. The disease will also be included as a key point in next year’s Women’s Health Week, organized by the Jean Hailes Foundation.
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