Producing a worthy illness: Personal crowdfunding amidst financial crisis
Introduction
“Why do I support universal healthcare paid for with our taxes?” asked a progressive political meme that circulated in August 2016. “Because I don't want to live in a country where people have to set up a GoFundMe page just so they don't die.” This meme reflects a remarkable emerging phenomenon within U.S. health care: the use of charitable crowdfunding sites such as GoFundMe (GFM) to address financial burdens arising from illnesses, disabilities and accidents, crises exacerbated by unfilled gaps in the social safety net. Increasingly, Americans are using crowdfunding strategies to draw attention to their illness stories, in order to solicit support in the form of donations and “shares” on social media, and to ameliorate the extraordinary costs of uncovered or poorly covered health care (Sisler, 2012).
Crowdfunding has rapidly become institutionalized as part of the health care financing landscape: medical institutions such as hospitals counsel patients to set up campaigns, and starting campaigns for friends and family members has become a popular form of caregiving (Vance, 2012). GFM, a for-profit company founded in 2010, raised over $470 million in campaigns by 2014; by 2016, yearly fundraising exceeded $2 billion (Hurst, 2015, Equality Florida, 2016). Medical and health campaigns consistently comprise GFM's most popular funding category, claiming 17% of total donations in 2012 (Barclay, 2012). By 2015, GFM had hosted more than 1.8 million campaigns for medical causes (Mac, 2015). GFM charges a 5% fee on all funds raised which makes it an extremely profitable venture, earning hundreds of millions of dollars each year from charitable campaigns hosted on its site.
The rise of medical crowdfunding emerges from two intertwining phenomena: fiscal crises in the American health care and social assistance systems, combined with the emergence of “sharing” and “crowd” economies that promote hyper-individualized and largely unregulated entrepreneurship. As such, medical crowdfunding campaigns provide a living archive of Americans' struggles to cope with illness in a neoliberal health system and in the wake of the 2008 global financial crisis, using a range of social media literacies to promote their appeals. Contexts of austerity encourage needy individuals to market their illness experiences and basic health care needs (Beckman, 2010, Lorey, 2015). We argue that the promotion of self-marketing for financial survival requires crowdfunding campaigners to learn and demonstrate media literacies across multiple domains in order to establish credibility, attract donors, and evoke a sense of deservingness. As discussed below, this is coupled with pre-existing social mores about deservingness and social assistance that penalize already disadvantaged groups. Taken together, we suggest that these phenomena increase the likelihood that crowdfunding for healthcare is exacerbating severe population health disparities.
Despite the growing popularity of medical crowdfunding, very little research to date has explored its usage and consequences (Snyder et al., 2016). Due to the paucity of research on this topic, we open with an explanation of how austerity in the U.S. healthcare system intersects with the rise of crowdfunding as a neoliberal economic system. We then report on the results of an exploratory inquiry into medical crowdfunding campaigns, examining how they reflect a prevailing politics of deservingness (Sargent, 2012) and reinforce social and health inequities in the U.S. We first present quantitative data on the characteristics of 200 randomly-sampled campaigns, and then provide an in-depth textual analysis of selected campaigns that explores the binds campaigners face in representing financial distress on crowdfunding platforms.
Section snippets
Austerity and affordability in the U.S. Healthcare system
Health care in the U.S. relies on a privatized, market-driven financing model that has undergone repeated austerity measures since the 1980s (Bodenheimer, 1989, Navarro, 2009). Austerity policies generally worsen health outcomes (Basu and Stuckler, 2013), but they also reinforce systems of care that deepen financial instability and social inequities (Pfeiffer and Chapman, 2010). 62.1% of all bankruptcies in the U.S. are medical, making medical debt a major source of financial insecurity for
Methods
In order to better understand how, and under what circumstances, Americans are utilizing crowdfunding for health care, we conducted a mixed-methods study of a randomized sample of 200 GFM campaigns between March and September of 2016. GFM, founded in 2010, was chosen for the study because it is recognized as the world's largest crowdfunding platform, based on both funds raised on the site and the number of backers participating in campaigns (Mac, 2015). Campaigns on GFM are organized into 21
Characteristics of crowdfunding campaigns
Quantitative data underscore the enormous diversity among campaigns in terms of their goals, relative success, and social media capabilities. As shown in Table 1, the randomized sample of 200 crowdfunding campaigns revealed considerable variability across almost all indicators. Campaign goals - the stated monetary amount which campaign organizers hoped to raise - ranged in size from $310 to $100,000 (mean $12,505, SD 16950.03). Taken together, campaigns in the sample raised over $600,000,
Conclusion
This paper offers findings from the first stage of a multi-stage research project that will include more long-term, face-to-face ethnographic inquiry. In this way we seek to fill an important gap in the scholarship that examines the use of crowdfunding to meet individual healthcare needs. The data distilled from sites like GFM has inevitable limitations. For instance, it is difficult to assess demographics of campaigns without introducing bias. In addition, we are unable to observe: how
Acknowledgements
We are especially indebted to Jessica Cole for extensive research assistance on this project; Ethan Abeles for helping to facilitate data capture; Christopher Wade and Johanna Crane for their valuable input; Aimee Desrochers for early research assistance; the University of Washington Bothell for research support. We are grateful for the generous support we received from the Simpson Center for the Humanities at the University of Washington, which enabled us to host the 2016 Crowdsourcing Care
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