An End to Endo

Australian women have lived with endometriosis for too long. The Government is funding new research and treatment to end the scourge. By Fred Pawle.

While Bill Shorten makes misinformed, futile promises to improve our world-class, widely accessible treatments for cancer, the Coalition Government is implementing a health strategy in another area that Labor has mostly ignored.

Endometriosis is a painful, incurable condition that affects more than 700,000 women in Australia. It is caused by tissue from inside the womb growing in other areas, and has been detected in reproductive organs, the bowel, bladder, muscles, lungs and brain.

It causes severe pain, especially while menstruating, and can lead to infertility. Sufferer Gabrielle Jackson explained in The Guardian in 2017: “This disease has taken part of my life. It’s definitely taken part of my savings. In the past two years alone I’ve spent $40,000 on endo-related medical costs.” Jackson considers herself lucky. Other sufferers are rendered unable to work and wind up in poverty. It can even lead to fatal complications.

The campaign to deal with the disease began with the formation of the Parliamentary Friends of Endometriosis Awareness Group, with Liberal Nicolle Flint and Labor’s Gai Brodtmann in 2017.

In December that year, Health Minister Greg Hunt announced Australia would soon adopt its first ever co-ordinated policy. He also said that such a response was long overdue. “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,” he said.

One of the most urgent issues is earlier diagnosis of the disease. Diagnosis currently takes eight to nine years, partly because symptoms vary and partly because doctors are insufficiently aware of the condition’s existence.

Currently the best form of diagnosis is invasive, under general anaesthetic. Minister Hunt last year announced, as part of a $2.5 million comprehensive action plan, funds to investigate simpler, non-invasive ways of diagnosing. Another $1 million was allocated to raise awareness of the condition among GPs.

The urgency of this research and awareness cannot be overstated. In this concise and frightening account, Forrest MP Nola Marino describes how close she came to losing her daughter Kylie to the disease.

“Do I have to tell you what it felt like to sit beside her bed for 11 days, willing her to live and telling her just to breathe - 'Breathe, sweetheart. Just breathe, Kylie',” Marino said. “Do I have to tell you how much pain she’s been through? Do I have to tell you it shouldn’t have come to this? I say to every young woman: take these symptoms seriously. Get a second or third opinion, if necessary. I say to GPs and gynaecologists: I know the complexity of the diagnosis, but please take seriously every young woman like Kylie who presents to you with these symptoms, young women whose instincts and symptoms are telling them there is a problem.”​

The parliamentary response, like the disease, is not specific to one party. Labor’s Brodtmann is also a regular advocate for better care for sufferers. What is specific to one party, however, is the ability to fund better care.

Lesley Freedman, of EndoActive, the nation's leading advocacy group, wrote to Catherine King, Labor's shadow minister for health, on April 18, asking for her party's policy on the disease should it win government on May 18. She is yet to receive a reply.

Freedman is, however, impressed with Minister Hunt's performance. “Greg has been amazing,” she says. “(The action plan) could not have been more welcome. It's the gold standard of what we want. It is particularly powerful coming from a male minister.”

Labor’s recent term in office was characterised by cutbacks to the Pharmaceutical Benefits Scheme, caused by diminishing revenue and excessive spending in other areas. Only the Coalition knows how to manage the economy in order to fund world-class health care for all.