Elsevier

Social Science & Medicine

Volume 187, August 2017, Pages 233-242
Social Science & Medicine

Producing a worthy illness: Personal crowdfunding amidst financial crisis

https://doi.org/10.1016/j.socscimed.2017.02.008Get rights and content

Highlights

  • Details how crowdfunding intertwines with conditions of austerity.

  • Finds that crowdfunding is particularly popular in states with less access to public insurance.

  • Argues that success in crowdfunding requires unique literacies.

  • Shows how crowdfunding reinforces austerity by eroding claims for social protection.

  • Reveals how crowdfunding has the potential to exacerbate social and health inequities.

Abstract

For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity--along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)--are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March–September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.

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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