In 2018, the Government launched a National Action Plan for Endometriosis (NAPE), aimed at improving endometriosis treatment, diagnosis rates, and support for those living with endometriosis and pelvic pain.
Endometriosis (‘endo’) is a disease when tissue similar to the lining of the uterus grows in other areas of the body.
It affects at least one in seven people with a uterus. Around half of people with endo face fertility issues.
Six years on, how is the plan tracking? Has anything changed for Australians with endo?
Background
People who have endometriosis often experience severe and chronic pain before, during, and after their periods.
It can also cause bleeding or spotting, painful intercourse, digestive problems, and in some cases, increased difficulty falling pregnant.
On average, endometriosis can take more than six years from onset of symptoms to diagnosis.
Action plan
NAPE was launched by the then-Coalition Government. This month, the Department of Health released an update on its progress.
It said the last Federal Budget allocated funding for endometriosis treatment, early intervention, patient support, and improving access to medical scans like MRIs to help understand fertility concerns.
Currently, endo can only be diagnosed with surgery. The report also flagged ongoing research funding to better understand endo, including ways to improve the diagnosis process.
What’s changed
When the plan was launched in 2018, the government said there was a “lack of definitive research” into the condition.
At the time, patients told the government endo was “misunderstood“ and “under-researched.“
Since then, the government has appointed an Endometriosis Advisory Group to guide research and funding to priority areas.
However, Chair of Endometriosis Australia Monica Forlano said there is “a long way to go.”
Women’s pain
Over the last few years, 22 endo and pelvic pain clinics – aimed at improving access to endometriosis treatment and diagnosis – have opened across Australia.
However, Forlano told TDA more clinics and training for nurses were needed.
This year, the Victorian Government announced an inquiry into women’s pain, which it said would help Victorians who “have lived with pain in silence.”
The Queensland Government also recently announced $18.2 million in funding aimed at providing faster access to endometriosis treatment.
Medication
Last month, the Therapeutic Goods Administration (TGA) approved a new endometriosis treatment prescription.
‘Ryeqo’ was initially approved to stop non-cancerous tissue growth in the uterus in 2022. The TGA has now approved it specifically for endometriosis treatment.
However, Ryeqo is not listed under the Pharmaceutical Benefits Scheme (PBS) so its cost is not government-subsidised. The drug is estimated to cost patients as much as $135 for a month‘s supply.
What’s next?
One of NAPE’s original targets was to include more information and education about menstruation in school curriculums.
Forlano called for a greater commitment to this target, saying schools need “to educate young girls and boys” in order “to reduce the stigma and shame that often surrounds” menstruation and endometriosis.
Response
Assistant Health Minister Ged Kearney told TDA women’s pain “has not been taken seriously” and that the government is “listening and acting” to support women’s health.
However, Shadow Health Minister Anne Ruston told TDA she’s concerned that “much-needed” pain clinics are “not delivering the access and treatments that were intended.”
Ruston said the Government needs to rethink endometriosis care, instead of boosting services that already exist.
