Sitting back with her hands resting on her chest, Renee’s hand brushed over something. “Oh my god, what is that?” she thought.
The healthy 23-year-old could not have imagined the “rock hard” lump was a rare and aggressive form of breast cancer, particularly given her first ultrasound came back normal.
After the initial shock of diagnosis on May 24 this year, Renee faced the shock of what was to come; a double mastectomy, fortnightly chemotherapy, IVF treatment and a host of scans, tests and medications.
The government covers the cost of chemotherapy and partial Medicare rebates are available for some treatments. The bulk of it however falls to patient and, if they’re lucky, any family or friends who can provide financial support.
Renee, a former part-time Coles worker, was now unable to work and the financial strain became another burden on her and her family.
When her cousin and aunt suggested they set up a GoFundMe campaign to raise money, Renee and her mother were skeptical.
“We were quite hesitant to be honest because, for us, we don’t really want to accept money from anyone,” says the Mebourne-based university student who is studying a master’s degree in occupational therapy.
Her aunt reassured her that others set up campaigns for far less worthy causes, “like just to get a boob job”, while family and friends encouraged her to do it.
“Friends and family said ‘we want to support you. We feel so helpless’. There’s not much people can say or do that’s going to make anything better.”
After three weeks of contemplation, they agreed and the campaign was set up on the 8th of July.
Within 24 hours they had “gone well and truly over” the $15,000 goal and closed the campaign after one month.
“At first it was so overwhelming,” says Renee whose first round of chemotherapy ends in October before doctors assess surgery and radiation options. “It really did go to show how much support I do have out there. It was really humbling.”
The money is being used for her ongoing treatments, alternative therapies including oncology massage and appointments with a naturopath as well as the “big out of pocket expense” that is IVF.
“Chemo can kill your reproductive system and put you into menopause,” Renee explains. “I did IVF injections and egg collection and now I’m on menopause injections as well just in case. They shut my ovaries off and then after the treatment I’ll stop the injections and see if it kicks in all naturally again and I may be able to conceive when I’m older.”
‘Financial toxicity’ of being ill
It is often the unexpected costs that sting those who are sick, says Professor Sanchia Aranda the CEO of the Cancer Council.
“We’ve been through this personally in my family over the last couple of years,” Aranda says. “My niece died in March of a fairly rare cancer and because there are very specific pieces of care that are funded even in the public sector, she had $3500 worth of diagnostic tests out-of-pocket in the first week.”
Her niece “wasn’t well off” so family and friends, after they had “recovered from the shock that some of these things were not covered”, pitched in to support her treatment.
Not everyone has this sort of support.
In the newly published Cost of Cancer report, one fifth of those with cancer said that finances impacted their decision making about treatments while a “small number” said it resulted in them making different treatment decisions.
“We know that one of the reasons poorer outcomes occur in rural and remote Australia is to do with the expense of attending a radiotherapy centre and that [some] might choose not to have that treatment,” Aranda explains.
It is not because of treatment costs but the “hidden costs” of being away from their farm, their family and their job as well as accommodation and travel expenses during that time.
“We know from Australian Health and Welfare data that cancer causes 30 per cent higher mortality in the least advantaged population versus the most advantaged.”
Some of that is to do with increased tobacco smoking in disadvantaged communities, Aranda explains but some of it is due to access to treatment: “And much of those access issues is based on ability to carry this financial toxicity.”
A 2016 report by the George Institute of Global Health found that the risk of dying from cancer one year after diagnosis was increased among those who struggled financially while nearly half of all patients experienced “financial catastrophe” by the end of the one year mark.
Cancer is estimated to cost the individual about $5000 but it is “hugely varied” Aranda says and doesn’t account for hidden costs and lost earnings. A new report in JAMA Oncology found that one third of patients that were insured still faced out-of-pocket costs that were greater than they expected.
“We have a pretty good health system and if you’re treated in the public sector it doesn’t necessarily have a lot of direct out of pocket costs, but there are a lot of indirect costs.” Aranda reiterates, adding that many people aren’t informed about the associated costs. “The financial disclosure statements really need to be thought about hard.”
Organisations like the Cancer Council provide pro bono financial and legal services and offer small financial grants so a patient can pay an electricity bill – “that’s a current big issue in Australia” but, Aranda says, “we have insufficient resources for the demand”.
For these reasons, more people are turning to GoFundMe.
“The platform has provided a formal avenue, particularly for family and friends who want to rally around them and provide some support,” she says. “GoFundMe has made a great contribution.”
That said, Aranda adds: “I think an increasing group of our society is skeptical that these are fraudulent”. The only way to ensure you’re helping someone who is truly unwell is if they are, in some way known to you.
“I think it works really well in known environments, not so well for stranger environments,” Aranda says. “People should have a healthy skepticism that their money is going to a good cause.”