Take-up of endometriosis treatments still lagging

One in seven girls and women in Australia are now estimated to live with endometriosis. Despite this, it still takes 6–8 years on average from the time symptoms first present to getting a diagnosis.
 
The Federal Government’s implementation of the National Action Plan for Endometriosis (NAPE) in 2018 was seen as a significant step towards helping to reduce this timeframe, with a focus on raising awareness about the chronic disease.
 
Its aim has also been on improving treatment options, funding research and creating partnerships.
 
But since the plan’s launch, recent research suggests it has yet to translate into meaningful change when it comes to treatment. 
 
The study, conducted by the University of Queensland (UQ), analysed uptake of two endometriosis treatments – laparoscopic resection and use of the drug nafarelin – before and after the launch of NAPE using data from January 2012 to December 2023 on monthly Medicare and Pharmaceutical Benefits Scheme (PBS) claims.
 
It found that the plan may have contributed to a small, but steady, increase in the utilisation of laparoscopic resection used in severe cases of the condition.
 
It also found that NAPE’s release was associated with an immediate spike in the utilisation of nafarelin, but that it did not make any difference in long term uptake or use.
 
However, Associate Professor Magdalena Simonis, who is a GP and leading women’s health expert and advisor, told newsGP that Medicare and PBS data may not be as reflective of change as assumed by the study.
 
‘Had they asked women with lived experience and GPs about the impact of NAPE, this might have revealed different responses,’ she said.
 
‘[They may have found] a higher level of awareness amongst women to seek help for pelvic pain or heavy menstrual bleeding.
 
‘GPs might also be indicating that they know more about the complexity of this condition and that it is a chronic disease that surgery alone can’t fix.’
 
The GP also noted that it is still early days since the plan’s launch in 2018, saying it is ‘too early to tell what the impact of the NAPE has on treatment interventions and laparoscopy rates’.
 
Lead author Chiemeka Chinaka, who is a researcher with UQ’s School of Economics, acknowledged that this could very well be the case.
 
‘Some of these plans take a long time to trickle down to have the effect that you want in terms of more diagnoses and more treatments,’ he said.
 
‘It might be that it is slowly building towards improvement, but the effect so far has been very, very modest at best.’
 
After the plan’s launch, it took five years for the Government’s proposed 22 Endometriosis and Pelvic Pain Clinics to be set up nationally by March 2023, which are staffed by practitioners who have specific knowledge of endometriosis interventions.
 
While public awareness about the chronic disease may in fact be growing, Mr Chinaka did note that part of the issue when it comes to uptake of laparoscopic resection could be the long public hospital wait-times.
 
According to data from the Australian Institute of Health and Welfare, 7% of patients wait more than 12 months for surgery in the public system. Further to that, out-of-pocket costs for surgery can range from $3000–$10,000, regardless of whether patients are going through the public or private system.
 
‘The waiting time for something like a laparoscopic resection is so long it means a huge number of endometriosis patients have to go through the private system, which creates another barrier for them,’ Mr Chinaka said.
 
‘It is easy to say when reviewing government policy that we need more, but people with endometriosis do need targeted strategies, specialised clinics and specialists who are well-funded to reduce the burden of out-of-pocket costs.’
 
The study authors concluded that there is a need for continuous monitoring of policy effects, as well as potential adjustments to ensure sustained benefits for patients.
 
They also recommended that policymakers consider additional strategies, ‘such as targeted outreach and provider incentives’, to further enhance utilisation of existing treatments where appropriate.
 
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endometriosis NAPE National Action Plan for Endometriosis women’s health