“SOMETHING is seriously wrong if a terminally ill girl with a brain tumour has to raise $120 000 to have surgery,” said Professor Henry Woo in a tweet in May 2019. “If it was a valid surgery, it could/should be performed in the public system under Medicare.”
Private hospital surgeries with particular specialists are not the only online Australian crowdfunding campaigns for health care-related expenses; other examples include crowdfunding for overseas treatments (here), experimental or unapproved therapies (here), or for general support with associated family costs (here). Why is this the case? In the US, GoFundMe — the most popular crowdfunding website — reports that about a third of their campaigns are for health care-related costs, boasting a total of USD$800 million raised per year. This is likely due to the number of uninsured patients (44 million at last count) and the discourse on high cost medical care in the US.
Walter White Jr even set up a crowdfunding website for his father’s cancer treatment in the 2009 season of Breaking Bad.
In Australia, however, we tend to assume that if our chemistry teachers have cancer they will not need to crowdfund – or become drug lords – because of our public and private health insurance coverage. Yet, if you go to the website au.gofundme.com/medical-fundraising, you can scroll through countless stories and hashtags of cancer battles and last hope treatments, accommodation and travel costs (both here and overseas), and even public hospital waiting lists and issues with private health insurance policies. Something may be seriously wrong here.
Two possible answers to why patients in Australia’s health care system have turned to online crowdfunding are that our “universal” coverage has holes in it and crowdfunding is filling these gaps and paying off the other hidden costs related to receiving treatment, and that crowdfunding has led to a new funding source for treatments that are not yet (or never will be) funded under our public insurance, Medicare.
Extreme out-of-pocket costs have drawn increasing attention from Australian media, researchers and health policy makers. The 2018 Consumer Health Forum member survey reported that one-fifth of respondents with cancer had paid more than $10 000 for their care. Results in the literature are based on data from the Australian Bureau of Statistics Household Income Survey, the Commonwealth Fund Survey, payment gaps using Medicare data, and private insurance medical claims. These results have shown us that out-of-pocket costs can be high, variable and increasing – a potential barrier to care for some patient groups.
Our routinely collected data, however, likely do a poor job of capturing the examples of extreme costs we see in the media or on these crowdfunding campaign pages. Claims data are siloed across the different health care sectors and so it is difficult to get a total sum of patients’ contributions towards their care. Claims data also do not report the care that was avoided because it was too expensive. Even how researchers and clinicians consider and define out-of-pocket costs may be different to the costs that really affect patients, such as travel, family accommodation, rehabilitation, and income loss.
The gaps in these data and evidence have led to a collective assumption that Australians do not go bankrupt funding their health care. The existence of these crowdfunding campaigns challenges this assumption, and potentially provides new evidence on the failings of our health care system. These are patients’ stories that have yet to be described in the literature.
The other possibility is that there are good reasons our system does not fund these treatments. They may be experimental or alternative therapies with no supporting evidence. We can debate about the patient’s right to try certain treatments in dire circumstances; many of us would push for this for ourselves or for our loved ones in the same situation.
What we should question, however, is whether crowdfunding is leading to an increase in these providers’ profits and the number of hopeful patients who may be at risk of serious harm. A successful crowdfunding campaign story does not lend itself well to an objective discussion of the likely outcomes and risks of these treatments.
Regardless of what is being funded on these campaign pages, we also need to question who is being funded. Campaigners with an ability to craft a story of need and deservingness, with large social and affluent networks, are likely to be more successful than those without.
These factors are tied to education level, social class and privilege. A recent BMJ Open article showed that campaign pages for cancer treatments in Canada were more prevalent in areas with high income and education attainment.
It is also likely that patients with certain diseases are more appealing to donors than others because of our beliefs of deservingness. An otherwise healthy person with brain cancer might outrank a person with lung cancer who smokes. Crowdfunding is far from an equitable health care funding model.
Another ethical dilemma is that funding success is dependent on patients forfeiting their medical privacy and personal details in a very public space. This is particularly concerning given that a large proportion of campaigns appear to be created by relatives or friends, and not the patients themselves. The problematic judgement of the real need behind the campaign lies with the donors; from the opportunistic or well-meaning charity for a patient with already fully funded care to the outright fraudulent pages. No doubt this is – or will become – an ethical minefield for health care providers in our system.
As Snyder and colleagues stated in their call to action on ethics-focused social science research in this field, we need to address the “ethical and practical effects of medical crowdfunding for campaigners, recipients, donors, and the health system”. This is especially true in Australia’s system, where our Medicare system is based on the principles of universal health care for our citizens.
Crowdfunding may mean there is an unmet need from Medicare and our supplementary private health insurance coverage, or evidence of other related costs not recorded in claims data. It could also be an opportunity for more patients to access new, high cost treatments – although this will be far from what we would consider equitable access. Something may be seriously wrong here, and perhaps health care system researchers and policy makers should scroll through the GoFundMe campaign pages and consider this question.
Dr Kelsey Chalmers is a Research Associate at the Menzies Centre for Health Policy, and was recently awarded her PhD in Public Health.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.