“The growing importance of medical crowdfunding (MCF) is reflected by trends on GoFundMe, the largest social crowdfunding platform in the world. In 2011, medical causes raised $1.6 million on GoFundMe; in 2014, the amount had increased almost a hundredfold to $150 million and in 2016, more than $650 million.
[..] The growing reliance of health care consumers from the US on MCF has been attributed to increasing health care costs and the lack of a publicly funded health care system. However, the popularity of MCF in developed countries with universal health care such as Canada and the UK cannot be similarly explained.
[..] We conducted a cross-sectional analysis of campaigns launched between February 2018 and March 2019 from the GoFundMe domains in Canada, the UK, and the US.
[..] Of the 3396 campaigns, 1091 originated in Canada, 1082 in the UK, and 1223 in the US.
[..] Campaigns in this study collectively raised $92.9 million, accounting for 51.9% of the total funds sought. US campaigns (median [IQR], $38 204 [$31,200 to $52,123]) raised more funds than campaigns in Canada ($12,662 [$9377 to $19,251]) and the UK ($6285 [$4028 to $12,348]). Only 33.3% of all campaigns had met their goal at data extraction. Funds raised ranged from $2772 to $343,762 per campaign. US campaigns set higher fundraising goals than those in Canada and the UK. Accounting for $57.8 million (62.2% of the total funds raised), US campaigns raised approximately 3 times the funds of Canadian campaigns and 6 times the funds of UK campaigns on average, despite being 2 months shorter in duration. US campaigns had significantly more donors and Facebook shares compared with campaigns in Canada and the UK.
[..] Approximately one-third of all campaigns (1078 campaigns) were fundraising primarily for treatment expenses. Of these, campaigns funding routine care were approximately 3 times more common in the US (77.9% [272 of 349 campaigns]) than in Canada (21.9% [55 of 251 campaigns]; difference, 56.0%; 95% CI, 49.3-62.7%) or the UK (26.6% [127 of 478 campaigns]; difference, 51.4%; 95% CI, 45.5%-57.3%).
[..] Crowdfunding was initially heralded as a digital safety net or a mechanism for democratizing charity where anyone could benefit. However, anecdotal and empirical evidence suggests that crowdfunding may exacerbate socioeconomic inequities. In our study, Black and female individuals were underrepresented in US campaigns and Black individuals were underrepresented in Canadian campaigns.
[..] Race and gender disparities reflect the pillars on which MCF is dependent: access to technology, literacy, social capital, and perception. Those with socioeconomic disadvantage are more likely to experience a digital divide that limits online participation because of a lack of access to information technology (eg, computer and internet). Writing, media, and health care literacies, which reflect socioeconomic privilege, enable an individual to augment his or her illness narrative, communicate deservingness, and thereby, generate campaign appeal and influence. Furthermore, broader, more affluent social communities and larger social media networks are well-recognized factors associated with crowdfunding success. Finally, conscious and unconscious systemic racial and gender biases likely obscure perception of worthiness in MCF campaigns. Our findings suggest that MCF facilitates the distribution of resources according to biases and preferences and thus, contribute to widening social inequities.
[..] The trends seen in the US suggest that its greatest systemic funding failure may lie in the provision of routine health care. [..] For US campaigns across all diagnoses, and especially for common diagnoses such as acute illness and trauma, routine care was the most common reason for fundraising. Among campaigns primarily funding treatments, 77.9% were for routine care in the US compared with 21.9% and 26.6% of analogous campaigns in Canada and the UK, respectively. Interestingly, campaigns for routine care raised substantially less in the US, perhaps reflecting the saturation of the US MCF market with this type of campaign. US health care costs are the highest in the developed world, and health insurance deductibles have increased 8 times as much as wages since 2008. The disproportionate popularity of MCF in the US, combined with the predominance of campaigns for routine care, likely reflect high out-of-pocket costs associated with essential health care in the US.
The trends seen in Canada and the UK may reflect unique failures within their publicly funded health care systems. Routine care comprised 21.9% and 26.6% of campaigns primarily funding treatment in Canada and the UK, respectively, pointing to possible gaps despite universal health care. These gaps may be associated with rising out-of-pocket medication costs and insurance premiums in Canada and dissatisfaction with wait times for public care in the UK. Fundraising for experimental and approved but inaccessible therapies was the purpose of approximately 50% of campaigns in Canada and the UK, highlighting one of the perceived shortcomings of publicly funded health care—insufficient or delayed access to novel and experimental treatments.
For patients with cancer, financial hardship is common as novel expensive therapies become the standard of care and survival rates rise. Of the 9.5 million people diagnosed with cancer between 2000 and 2012 in the US, 42.4% had exhausted their life’s financial assets within 2 years. The enormous scope of unmet financial need in cancer care is reflected in the marked overrepresentation of cancer campaigns on crowdfunding platforms. In our cohort, cancer accounted for 54.6% across the 3 countries. Notably, raising funds for alternative therapies was far more common in cancer campaigns primarily funding treatment than for the other diagnoses examined. Patients may seek alternative therapies for cancer to complement or replace proven treatments either by choice or because they were not available or failed. The popularity of campaigns for alternative therapies for cancer potentially propagates unproven and potentially dangerous therapies yielding wasted resources, false hopes, delay of appropriate palliative care, and reduced survival.
[..] Our findings also suggest that there are racial and gender disparities in the use and success of MCF. MCF directly (through platforms that promote the victim narrative) and indirectly (by rewarding these narratives with funding success) promotes the myth that gaps in health care funding are due to misfortune and exceptionality, rather than systemic failures. As such, MCF may entrench the systemic failures that led to its need. Thus, although crowdfunding has the potential to provide short-term relief from medical financial burden for a subset of patients, it may carry wider-reaching paradoxical societal effect for those most socially disadvantaged. Further research is needed to understand the social, ethical, and economic implications of MCF within each health care setting and inform policy changes that promote equitable and accessible health care through this practice.”
Full article, Saleh S, Ajufo E, Lehmann CU et al. JAMA Network Open 2020.10.26