Economic hardship is a lingering consequence of Brooke’s breast cancer treatment, more than 30 years ago – which she paid for by selling her wedding ring. The treatment left her debilitated, fatigued and unable to work for some time. Friends brought groceries and the Cancer Council provided some financial support, but Brooke needed to scrounge for food for her beloved dogs.
I interviewed Brooke and 24 others, working with Louise Chappell and Siobhan O’Sullivan, who – like me – were both researchers and cancer patients.
I was diagnosed with an aggressive breast cancer that had metastasised to my lymph nodes in 2021, when I was 29 weeks pregnant. Louise was first diagnosed with breast cancer in 2009, with recurrences in 2016 and 2020. She is currently living with metastatic breast cancer, and is in regular treatment. Siobhan was diagnosed with ovarian cancer in 2020, during COVID. Devastatingly, she died in June 2023.
We wanted to find out about the challenges people face when navigating oncology care in Australia, as patients and carers. We also spoke with health-care workers, who revealed what it’s like to be on the “other side” of the desk.
Na'ama Carlin with fellow researchers and cancer patients Siobhan O'Sullivan and Louise Chappell (pictured left to right).
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Wendi, a teacher who was treated for breast cancer in 2019, told us she had surgery that Christmas and recovered over the holidays. “Then I started the radiotherapy and was able to take that whole block of ten weeks off, which was great.”
Because she had “heaps” of sick leave the following term, she was able to gradually return to work. But she acknowledged not everyone could – and some in her position would have to return to work immediately. “There’s no way I could have done that.”
In the increasingly casualised Australian workforce, many women diagnosed with cancer lack the resources to pay for treatment, or to support them as they take time off work for treatment and recovery. The financial implications are dire: casual workers have little job security, they receive no pay when they cannot work, and they lack accumulated sick leave for treatment and superannuation for an uncertain future.
In the online spaces I inhabit, cancer patients crowdfund to cover basics such as rent, petrol, childcare and even food. I didn’t have to do that, but I did end up crowdfunding a crucial element of my cancer treatment that was not covered by Australia’s Pharmaceutical Benefits Scheme (PBS).
Growing out-of-pocket expenses
Cancer patients often have to consider: can they afford to support core and supplementary treatments? Does their job offer adequate leave provisions? Can they take time off to rest? Do they belong to a community that can provide practical support such as transport, food, cleaning and care?
Treatment can also be affected by location: the further from an urban centre , the longer the patient will need to wait and the more they will need to pay to cover travel and accommodation expenses.
In Australia, “financial toxicity” in cancer care is growing, with people needing to spend increasingly more out-of-pocket. The ongoing out-of-pocket expenses that patients (and their families and friends) incur during treatment can have a lasting impact on patients’ emotional and psychological wellbeing, as well as their quality of life. It can lead to suboptimal cancer outcomes.
It means doctors might decide not to recommend particular treatments to certain patients, knowing they can’t afford them, or patients deciding certain medications are out of financial reach, or that they cannot sacrifice work to attend medical checkups.
Every chemotherapy session entails a gap fee of $50, along with parking and cab charges – but it’s not the only cost.
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I have experienced this first-hand. At the cancer institute where I receive treatment – I am regularly reminded that it is among the best in the country – there are fees I did not expect.
Every chemotherapy session entails a gap fee of A$50, along with parking and cab charges. Then come the costs of medication, childcare, specialist appointments and additional treatments such as acupuncture, massage and yoga to help manage symptoms.
‘I must cover the substantial gaps’
Like many cancer patients, I now have lymphoedema , a side effect of treatment. Oedema is the swelling and buildup of liquids in the body’s tissue. This condition – which Medicare does not adequately cover – commonly occurs in the arms of breast cancer patients, in the legs of those with gynaecological cancers, and in the head and neck of those with neck, tongue or throat cancers.
The lymphatic system is an intricate network of vessels and nodes that transport fluid (lymph) from the body tissues back to the bloodstream. Lymphoedema happens when the lymphatic system is not working properly, including when lymph nodes need to be removed as part of cancer treatment.
In this case, it is called “secondary lymphoedema”;…
Read the full article at The Conversation (AU) →
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