BCNA welcomes opportunity to take consumer voice to RACS

As a consumer organisation, the consumer voice is central to everything we do, including informing our policy and advocacy positions to improve outcomes for people affected by breast cancer. 

That’s why we welcomed the opportunity to speak at the Royal Australasian College of Surgeons (RACS) 91st Annual Scientific Conference in Adelaide earlier this month.  

In a keynote speech at the conference, BCNA’s Director of Policy, Advocacy & Support Services Vicki Durston amplified the voices of 3,350 Australians who provided their experiences to inform BCNA’s Breast Reconstruction in Australia 2021 report. 

‘This is an unprecedented opportunity for us to talk with you, to those of you on the frontline, about what we are hearing from our consumers – the issues that matter to them and how we might partner together to create meaningful change to the experiences of those living with or beyond a breast cancer diagnosis,’ Ms Durston told conference delegates. 

The 2021 report looked at equity and access to breast reconstruction following a mastectomy. Lack of communication about realistic results, waiting times, out-of-pocket costs and full consideration of all options available for reconstruction, including immediate and delayed options and the option to ‘go flat’, impacted equity of access.  

The report also found that patients need information about breast reconstruction early in order to inform decision making. 

Ms Durston took the opportunity in Adelaide to acknowledge the number of key surgeons in the audience who have worked with BCNA for many years and who ‘continue to work with us, either as members on our advisory groups, through participation on committees and key government projects’. 

In Australia, about 40 per cent of women diagnosed with breast cancer, around 8,000 people a year, undergo a mastectomy.  

Studies tell us that around 50 per cent of women who have undergone a mastectomy will opt for reconstruction if offered, and yet in Australia recent estimates place reconstruction rates anywhere from 17 per cent or potentially as high as 29 per cent in more recent work – however this is still representing a significant gap in access.  

Ms Durston presented key findings from BCNA’s breast reconstruction report, including:  

• Most reconstruction occurred only in the private system. 
  Yet lower socioeconomic status and higher rurality were both statistically related to reconstruction in the public system.  
• Waiting times (pre-pandemic) for delayed reconstruction in the public system were significant, with 75 per cent being placed on a waiting list, and almost 30 per cent waiting longer than the recommended 365 days for a category 3 elective surgery.
• For those able to pursue reconstruction in the private system, out-of-pocket costs were significant, with the average estimated OoPC being over $8,000 and another 10 per cent indicating costs over $15,000.  
• Additional costs were also found, with many respondents travelling long distances to access reconstruction and yet only 6 per cent of these reporting knowledge of their jurisdiction’s patient assisted transport scheme.  
• And for those who had completed their reconstruction, significant variance in satisfaction and dissatisfaction were reported, issues ranging from lack of symmetry, disappointment in both physical and aesthetic outcomes, and rushed or ill-informed decision making all cited.   

‘It is clear, therefore, that despite the intentions and agreements of our guiding cancer strategy documents, that equity and access gaps exist relating to patient’s geographic location, level of rurality, socioeconomic status, ability to travel, private health insurance status, and timely access to information and resources in order to make informed decisions about reconstruction options,’ Ms Durston told delegates. 

‘Put simply, patients’ ability to access a breast reconstruction in Australia varies vastly depending on their post code and their income and more recently where they sit on the waiting list or if they can get on the wait list at all.’ 

‘In addition, patients’ ability to make an informed decision about what type of breast reconstruction, or whether reconstruction is right for them at all, is inequitable based on the types and sources of information they receive, when they receive it, or if they receive any at all.’  

‘Partnerships are the only way we can address breast recon equity and access issues – and again we thank RACS for allowing BCNA to speak on this topic and celebrate that equity and access are priority topics for the college.’ 

Read BCNA’s report, Breast Reconstruction in Australia 2021.