“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.


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2 thoughts on “Crowdfunding: what does it say about Australian health care?

  1. Mark Allison says:

    I wonder what benefit, if any, The Trade Practices Act has had for consumers in general. It has certainly had unforeseen consequences for the medical profession and thus their patients.

    Previously, medical practitioners were unable to advertise in any way. The only form of promotion open to them was to gain a good reputation among their peers. There were very good reasons for this as the public, whence patients are drawn did, and do not, have the requisite knowledge to judge the validity of any claims to superior skill that might be promulgated.

    Nowadays, medical advertising is rife and while there are standards that are meant to be upheld, this seems to happen more in the breach than the observance. A quick web search under cosmetic surgery, or indeed any branch of medicine, will bear this out. Unfettered self promotion is allowed and some doctors have become media darlings, promoting their allegedly superior skills and knowledge and implying that the rest are not up to scratch.

    I am unaware of any evidence that any particular surgeon is so much more superior to others as to be deemed a miracle worker. Alas, the gullible and the desperate flock to these high profile self promoters and I suspect that much of the crowdfunding is to do with these reasons.

  2. Ian Hargreaves says:

    “The 2018 Consumer Health Forum member survey reported that one-fifth of respondents with cancer had paid more than $10 000 for their care.” Remove the terminal ‘e’ and it carries a completely neutral connotation, to which any reasonable person would say: “So, what’s wrong with that?”

    We had zero training in business management during my medical degree, and neither did my son (no change from 1982-2012 graduations.) There is a vague sensation that paying for something is dirty, so that treatment for dehydration should be free, despite the fact that we all have to pay our water bill. Colonoscopies should be free, but a plumber will charge you to fix your toilet. However, the universities and the colleges are setting an excellent example to current trainees of how to charge egregious fees.

    Every time my Alma Mater asks me for money to fund a medical scholarship for a worthy cause, this is crowdfunding. Should a terminally ill girl be unable to raise funds the way the AMA indigenous scholarship does? As the AMA website puts it, “click here to DONATE NOW”. Or the RACS: “The Foundation for Surgery is so lucky to have the most amazing donors – you!” Is it true that: “If it was a valid [scholarship/research project], it could/should be performed in the public system under Medicare”?

    Your accountant will tell you that doctors are suckers for financial scams, from plantation timber to Gold Coast units, because of our naive belief in people’s honesty and our poor financial education. Our politicians have lied to the general population by not admitting that governments do not have money, but they function by taking money from successful people and businesses, and giving that money to unsuccessful people and businesses. On average, no one can take more from the government in services than they pay in taxes. That includes general services such as government itself, defence forces, infrastructure and of course, education and healthcare. There will always be people who want something more expensive than the government is willing or able to provide, and the government is unwilling to be honest with them. The government will tell you that: “our Medicare system is based on the principles of universal health care for our citizens”, but it has neither the intention nor the ability to provide universal healthcare, for all conditions. Apart from anything else, Medicare does not fund medical education or research. Nor does it fund public hospitals, which are a state responsibility.

    The most startling current evidence that some surgeons are “much more superior to others” was presented at this year’s International Federation of Societies for Surgery of the Hand meeting in Berlin, at which surgeons from America, Austria, Hong Kong, and Australia presented nearly 100% success rate with different types of scaphoid bone grafting. A multi-centre UK trial covering the same time period, where the surgery is predominantly done by registrars, had a 60% success rate. We are very sheepish to admit that surgery “performed in the public system under Medicare” is frequently done by trainees who have worse results than experts. It is perhaps the most blatant frequent omission in the informed consent process.

    If you have read the autobiography of Chris O’Brien, even a Professor of surgical oncology can get short shrift from his public hospital surgical colleagues, which caused him to seek and receive help from the man he described as a “maverick”, Charlie Teo. And of course, the public hospital treatment and research facility named after him, the Chris O’Brien Lifehouse, has the ‘Support Lifehouse/Donate Now’ buttons at the top right corner of its home screen.

    And the really strange thing is, if a doctor was selling Teslas for $180,000, the AMA would hail him as a hero in the war on climate change, and Fellows of the College of Surgeons would have no qualms that it was entirely an out-of-pocket expense, for an important and socially responsible means of transport.

    “SOMETHING is seriously wrong if a terminally ill girl with a brain tumour has to raise [$180 000] to have [a Tesla},” said [nobody] in a tweet in May 2019. “If it was a valid [car], it could/should be performed in the public system under [State Transit]”. We accept that we have to pay for basic survival needs like food and water, and pressing needs like transport and housing. Is it time that governments confess, and we accept, that Medicare can be universal in its availability but cannot be universal in its ability to provide everything that modern patients require? Is a GP consult worth as much out of pocket as a tank of petrol, or cancer treatment as much as a Camry?

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