(Content taken from the The Guardian)
Australian health minister hears stories from women with disease before setting up national plan to improve treatment.
The Turnbull government announced on Wednesday that it will create the first national action plan for endometriosis to improve the treatment, understanding and awareness of a disease that affects more than 600,000 Australian women.
A targeted call for endometriosis research will be issued under the Medical Research Future Fund and the government will provide $160,000 in immediate funding to Prof Grant Montgomery to continue his work using genomics to investigate better treatments for women with endometriosis.
Endometriosis is a chronic disease that affects one in 10 women of reproductive age globally. It occurs when tissue similar to the lining of the uterus grows outside the uterus, causing inflammation, pain and in some cases, infertility. It is a commonly misunderstood condition and diagnosis takes an average of eight to nine years.
Endometriosis advocate and founder of EndoActive, Sylvia Freedman, said she was thrilled at the announcement and looked forward to working with the government “to change how endo is treated in Australia”.
Freedman is part the Australian Coalition for Endometriosis which met with the health minister, Greg Hunt, and shadow health minister, Catherine King, on Tuesday evening to present a list of priorities for action on endometriosis. The meeting was arranged by the Parliamentary Friends of Endometriosis Awarenessgroup, which was founded by Labor MP Gai Brodtmann and Liberal MP Nicolle Flint.
A list of five demands was presented to the health ministers, including for endometriosis to be made the 10th national health priority area, a federally funded public awareness campaign, greater funding for research, education in schools and for the development of clinical care standards. Hunt immediately announced the action plan and apologised to women with the disease that nothing had been done sooner.
“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 apologises that nothing was done sooner was unbelievably powerful,” Freedman said.
The quality-of-life impacts of endometriosis are considered similar to diabetes and it affects about the same number of women in Australia. But while the costs to society are considered higher for endometriosis it currently receives about 5% of the funding of diabetes through the National Health and Medical Research Council.
The Australian Coalition for Endometriosis is a peak body made up of awareness groups from around the country including Endometriosis Australia, the Pelvic Pain Foundation of Australia, the Endometriosis Association of Queensland (Qendo), the University of Queensland and EndoActive.