The Federal Government’s new Endometriosis Action Plan does not do enough to ease the financial burden of the disease, according to advocates.
The $3.5 million plan was launched in July by Federal Health Minister Greg Hunt and focused on awareness and research for endometriosis.
The plan did not include subsidising the medication used to treat the symptoms of endometriosis as a high priority.
Rachael Glin, who has endometriosis, started a petition to include endometriosis medication on the Pharmaceutical Benefits Scheme. The petition has more than 78,000 signatures.
“I currently pay about $80 a month for this medication so that I can just go on with my day,” Ms Glin said.
“I’m literally bed bound without it.
“I work full time and make enough money that can afford it, but there are a lot of women who can’t.”
Monash University research fellow Kate Young said part of the difficulty with including endometriosis medication on the PBS was that there was not one specific medication proven to be more effective than another for managing endometriosis.
“My concern is that women could be paying a lot of money for a treatment that might not necessarily help them,” she said.
Joanne McCormick and Monique Alva run Endometriosis Perth Sisterhood of Support, an organisation providing peer support and education for people with endometriosis in Western Australia.
Ms McCormick said the plan was a step in the right direction.
“Personally, I was quite emotional after reading the draft, as it touched on so many areas that are close to my heart and that also I could relate to,” she said.
Miss Alva said she thought the plan was a “massive achievement”, but having medication subsidised was the biggest thing she would like to see achieved.
“I personally have spent over $1200 in the past month on appointments and medications,” she said.
Endometriosis is a condition where tissue which normally lines the uterus grows in other parts of the body. It takes surgery to diagnose the condition, and there is no known cure.
The disease affects one in 10 women, and is as common as both asthma and diabetes.
Ms McCormick and Ms Alva described a cycle in which women were taking time off work to attend medical appointments, or take sick days, which in turn impacted their abilities to hold down full-time work.
“It seems a little bit ridiculous that those people aren’t able to access reduced costs of medication, seeing as they’re making every effort to continue to contribute to society and remain in full-time employment,” Ms McCormick said.