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Image: Tina Tiller
Image: Tina Tiller

SocietySeptember 16, 2020

The uncomfortable truth about medical crowdfunding in New Zealand

Image: Tina Tiller
Image: Tina Tiller

New research into online crowdfunding for healthcare reveals some worrying trends around which campaigns are deemed ‘worthy’ – and poses wider questions about who we want to be as a nation.

“Charity is a sign of the failure of the state.”

The above statement from Chlöe Swarbrick on Breakfast will be controversial for some – perhaps especially for those who hold “generosity” close to their hearts as an important Kiwi value. Indeed, we are apparently the third-most-generous country in the world – and seem to love to talk about it.

Online crowdfunding platforms are an increasingly common channel for that famous Kiwi generosity. Yet the way these platforms approach need is hyper-individualised, allowing private citizens to advertise their struggles, and other private citizens to view them and decide whether to respond.

Each year, Stuff releases a news story about the ever-growing totals of these crowdfunding donations. But looking at the patterns, in terms of who is fundraising for what, you can diagnose a variety of wider social and systemic issues. Globally, higher rates of crowdfunding are correlated with weaker healthcare and welfare systems… so what is it that is leading New Zealanders to have to turn to “the crowd” for help?

Patterns of successful versus unsuccessful campaigns also say a lot about wider social attitudes towards certain types of need, and certain types of people. What crowdfunding causes capture attention, and who is deemed deserving? Is this a “popularity contest” for survival, as the Guardian called it last year?

“Health” is the biggest category in donation-based crowdfunding globally. In New Zealand, this includes over 400 individuals and families who share their stories of illness, accident or disability online each year.

In 2020, I (a medical anthropologist at the University of Otago) received Marsden funding to research the social aspects of this phenomenon. My research team (Dr Ella Robinson, Laura Starling and Dr Penelope Bilton) are now completing the first phase, focusing on statistical data from 563 active campaigns over two major crowdfunding platforms: Givealittle and GoFundMe.

GoFundMe is the biggest platform internationally, with close to 80% of the global market share. They make a tidy profit by taking a percentage of all donations. But as New Zealand is not officially one of their “supported countries”, more people here use Givealittle, a New Zealand-specific and non-profit platform started in 2008.

Crowdfunding campaigns are often a shared effort; set up by friends, extended family members, parents or colleagues. It is relatively uncommon for people to set up their own campaigns (only 17% of people do this), although young adults are much more likely to do so than other groups.

The recipients of the funding vary. There are notably fewer campaigns for older adults (65+) despite this group having high health needs. The 4% of campaigns for infants make much more money, as a monthly average, than any other group.

Graph describing the life stages of people using crowdfunding for health issues.
(Graph: Susan Wardell)

Fifty-five percent of the campaigns were for women (including both cis and trans women) and 41% for men (including both cis and trans men), with 2% for people with different gender-diverse identities, and the remaining 2% not clear or for multiple people (eg couples).

Graph describing the gender of people using crowdfunding for health issues.
(Graph: Susan Wardell)

Seventy-eight percent of the campaigns we studied were for citizens or residents of New Zealand, who were receiving healthcare in New Zealand at the time of the campaign. New Zealanders overseas made up approximately 11%, and overseas citizens based in New Zealand (or wanting to come here for treatment) around 6%.

Campaigns were created for a range of short-term and long-term health needs.

Graph describing the types of health needs of people using crowdfunding for health issues.
(Graph: Susan Wardell)

A huge number of these (244 campaigns in total, nearly 42% of all campaigns) related to cancer. But there are also a high number diseases of the nervous system (motor neuron disease, spinal muscular atrophy, multiple sclerosis, epilepsy, Huntington’s disease and others), as well as strokes and heart conditions.

Better to fall off a ladder

The graph above shows that a whopping 71% of campaigns were for illness, compared to 11% that related to injury. This may reflect one major factor in New Zealand: the wide coverage of our ACC system, including both direct costs and indirect costs for people recovering from accidents.

In New Zealand, if you fall off a ladder and are laid up in bed for a couple of months, ACC will cover both treatment costs and weekly compensation (up to 80% of your normal wage). There is no equivalent tailored support system for someone who has suffered a stroke or been diagnosed with cancer, and is off work for a couple of months receiving treatment or in recovery. At best, they may qualify for the jobseeker benefit.

People with long-term disabilities (that made up another 6% of our dataset) can apply for a regular allowance that “helps to cover the extra costs of medical help, equipment, transport and running your home when you have an ongoing disability or illness”. However, it is income tested and the most you can get is $64.29 a week.

It makes sense, then, that people crowdfunding due to illness were much more likely to ask for help with general living costs, alongside specific medical costs, than those fundraising due to accidents or injuries.

A house with broken walls

Just under a quarter of all the New Zealand medical crowdfunding campaigns we studied asked for help with general living costs. Arguably, in many situations these other needs – housing, food, childcare – are just as important to wellbeing as the costs of medical treatment, especially in times of family stress.

Te whare tapa whā is a model for four dimensions of health, created by Sir Mason Durie in the early 80s. It’s widely used by health organisations and government ministries. But while New Zealand’s healthcare system does better than many countries with more privatised systems (in terms of covering or subsidising GP visits, pharmaceuticals and hospital care), Durie’s holistic model clearly hasn’t been taken seriously in the wider structures of state budgets, where poverty, housing, education, employment and mental health (all often mentioned in the campaigns stories we studied) are still enormous points of disparity.

Naming and shaming

Only 1.5% of health campaigns for individuals were related to mental health, despite high overall incidences of mental illness in this country. This low number can be seen in part as evidence of the stigma that lingers around mental illness. Especially since the same crowdfunding platforms host a huge number of fundraisers for mental health organisations, projects and startups. This reflects the historically patchy nature of state funding for mental health services, while also hinting at the social barrier for individual people putting their name and face to the issue as part of seeking help.

Many types of campaign risk having their outcomes skewed by social stigma. The campaigns asking for help with dental care, for example, which is not state funded for adults in New Zealand and is known to have socioeconomic links. In our study, these correlated with low average donations. Campaigns for weight loss surgery also risk stigma, as do many women’s health issues, such as breast reduction or endometriosis. Campaigns for gender-affirming surgeries, usually run by the recipient themselves, also had notably different trends, since lack of expertise and support in New Zealand meant people often had to fundraise the full cost of inpatient services, and/or go overseas for care.

It is noteworthy, too, that campaigns for people with illnesses received significantly more money (on average, per month) than those for people with disabilities. The campaign stories around illness were often able to emphasise the sudden or unexpected nature of the issue. Many could also tell hopeful stories of cure. Chronic or long-term issues are harder to “market”, since many remain stigmatised, and they also can’t give donors the same buzz in contributing to “fixing” them.

Selling your story, selling your self

Crowdfunding donations often come from a mix of family, friends, acquaintances and strangers, with the greatest success belonging to the rare few that go viral online. The reality is that the vast majority of medical crowdfunding campaigns do not meet their financial goals.

Ultimately success relies largely on who can tell a good story – one that fits with cultural values, and evokes the right emotions. This comes down in part to the type of health issue, as mentioned already. It also relies on a combination of education, digital/media literacy and time available to the campaign creator. It takes time to craft the initial story. In addition, having extra photos and regular updates is a predictor of financial success. But since both education and digital access are already known to be unevenly distributed, it is no wonder that crowdfunding turns out not to be the “gap-filler” it is sometimes believed to be, but instead reproduces existing inequalities.

Overseas data shows overwhelmingly that younger, prettier and whiter recipients make more money overall. Our study of New Zealand campaigns similarly showed a striking (and statistically significant) relationship. The campaigns for recipients who presented as white made more money on average, per month, than those for people who presented as Pasifika. Being white-passing also correlated with a higher number of donors.

Generous or fair?

The hardest thing about doing this research was reading through the dozens of campaigns that had nearly no donations. These were all worthy causes, and sometimes life-or-death ones. I am left wondering what will happen to them, but also asking questions about who is responsible for meeting these needs. And who should be?

This is an ideological question, as well as a political one, that extends out to all aspects of welfare; should it come down to the kindness of individuals with means? Or should it be formally embedded into the structures of the state? It is a question relevant to all of us as the election nears.

Generosity may be an important Kiwi value, but so is fairness. It may just be that time spent patting ourselves on the back for individual acts of charity is distracting from the bigger issues of an unfair system.

Keep going!