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“GoFundMe isn’t a Medical Plan”: An Ecological Study of Crowdfunding Insulin Success (Preprint)


 BACKGROUND
 Individuals in need of medical care are turning to crowdfunding websites to engage a 'crowd' or group for financial support. In the last decade, access to insulin has decreased considerably for several reasons, including the rising cost of insulin, high-deductible insurance plans and increasing insurance premiums. Many people with diabetes are forced to ration or go without insulin, and are turning to crowdfunding websites to seek financial donations to purchase insulin needed to reduce health risks and mortality, and sustain quality of life. This study aims to explore crowdfunding campaign requests to purchase insulin in the United States.
 
 
 OBJECTIVE
 To explore crowdfunding campaign requests to purchase insulin in the United States.
 
 
 METHODS
 In this retrospective, mixed-methods study, we coded the text of “GoFundMe” online crowdfunding campaigns and viral measures (shares, hearts and comments) from February 25 to April 15, 2019. We described campaigns (N = 205) and explored factors associated with campaign success using correlations and qualitative thematic analysis.
 
 
 RESULTS
 The majority of campaigns were initiated by middle-aged adults (26-64-years) (N = 77, 37.6%), with type 1 diabetes (N = 94, 45.9%) needing funds due to insurance coverage issues (N = 125, 61.0%). Factors associated with campaign success included requests for <$500 (P < .01), and higher viral measures (shares, P = .007; hearts, P < .001; comments, P = .002). Four themes emerged from the campaign text: 1) desire for self-management and survival, 2) diabetes management untenable given insulin access, 3) the aftermath of insulin unaffordability, and 4) privacy issues with crowdfunding. Campaign comments were both supportive (tangible, informational, emotional) and unsupportive (questioned need for campaign, crowdfunding deemed inappropriate).
 
 
 CONCLUSIONS
 Despite crowdfunding websites being used to support the purchase of insulin, campaigns raise only a fraction of the money requested. Therefore, “GoFundMe” Campaigns are not a reliable solution to obtaining insulin funds in the United States. Applying mixed-methods is effective to analyze online crowdfunding for medication costs such as insulin. However, it is critical for PWD to use resources other than online crowdfunding to access and obtain insulin due to low success rates.
