Despite increased funding and efforts to meet the rising cost of care, Medicare continues to fail people living with endometriosis. Endometriosis, a disease where tissue similar to the lining of the uterus grows in other parts of the body, brings chronic pain to 1 in 9 women and those assigned female at birth (AFAB). Annually, endometriosis costs Australia $9.7 billion, and over $30,000 per person. In my case, it took a $5,000 surgery just to learn I was part of that ‘1 in 9’.
In July and November last year, the Albanese government delivered the largest investment in bulk billing in Medicare’s 40-year history. The Prime Minister claimed this change would “make it easier, and cheaper for more than 11 million Australians to visit a doctor.” This came after calls for significant repair from the Australian Medical Association, citing Medicare’s failure to meet the rising cost of healthcare. However, patients with chronic conditions such as endometriosis are yet to experience a substantial increase in care.
Milli Weaver, founder of the non-profit organisation Endo Articles told me, “the financial burden experienced by someone with endometriosis is beyond substantial. Until there is a cure, Medicare needs to step up.” Members of the non-profit support group have suggested an appointment with a sought-after specialist may last just 10-15 minutes and cost upwards of $200 after the Medicare rebate. According to Endo Articles, the need for “patient-centred care developed with input from the patient community” is drastic. A lack of access to medical advice and treatment has pushed thousands to flock to social media for support. Across platforms, advocate groups champion March as endometriosis awareness month and beg for increased funding. One such effort is the About Bloody Time campaign, pushing for longer specialist consultations to be covered by Medicare.
Last Thursday night, the University of Sydney hosted a panel of health experts following a screening of the ‘Below the Belt’ documentary at the Charles Perkins Centre Auditorium. Dr Angela James, a leading professional from the Sydney Pelvic Clinic, highlighted Medicare’s shortcomings in supporting people living with the disease. Although Medicare offers a Chronic Disease Management Plan, patients are entitled to just five appointments, which Dr James told Honi Soit lays good foundations but is “often not enough.” Milli Weaver, also present at the panel, explained that “when someone has an acute injury they can be referred to a physiotherapist for upwards of 10+ sessions. Yet when someone has a chronic, incurable disease they are given 5 appointments all up.” Inconsistency in the existing framework appears to be a key issue.
Additionally, Medicare fails to account for secondary expenses and broader symptom management. “There’s lots of hidden costs,” said Dr I-Ferne Tan, a fertility specialist who addressed students at the panel. Costs not covered by Medicare can include specialist consultations, pain medication, specialised ultrasounds, absenteeism from work, and holistic recoveries such as physiotherapy and acupuncture. Specialised scans like the transvaginal ultrasound can cost upwards of $300 per scan in the hope of detecting lesions of disease growth. One member of the University’s SRC Women’s Collective, Sofija Filipovic, spoke to Honi Soit about Medicare’s negligent attitude toward pain management. In particular, she pointed out that “non-pharmacological pain relief products like heat packs or TMS machines which have been proven to be revolutionary in symptom relief” are also unsubsidised.
One student at the university shared throwing $1,200 towards her first surgery, followed by a shocking $4000 out-of-pocket on the second. That’s not including annual ultrasound fees close to $400. Coupled with the routine student anxieties of accumulating HECS debts and the rental crisis, it seems something has to give. Will it be student mental health, or our already dwindling trust in government initiatives? Sofija Filipovic suggests that while the government has committed significant funds to endometriosis research, “it’s very hard to access.” With few new promises on the horizon, it seems all one can do is demand: do better Medicare.
