GoFundMe and the Perils of Medical Crowdfunding
Despite being one of the more disquieting aspects of health care in the United States, the peculiar role of GoFundMe has become a mostly unremarkable fact in the eyes of many. The obscure machinations and internal politics of the crowdfunding platform, which facilitated the donation of $5 billion in 2017, have hitherto failed to inspire significant debate. Naturally, then, GoFundMe has been quickly integrated as an important feature of the health care system, as evidenced by the many hospitals in the U.S. that advise patients who cannot afford the costs of care to create campaigns and leverage their social network of friends and family for donations. The centrality of crowdfunding to health care has in turn been reflected on the GoFundMe website, with one in three campaigns on the site falling under the Medical category.1
While financing the medical care of sick people who would otherwise be unable to afford their treatment may seem unequivocally good, the entrenchment of medical crowdfunding sites like GoFundMe in the American health care landscape should be regarded as nightmarish and dystopian. The campaigns on these platforms collectively paint a harrowing picture of the economic precarity associated with illness in a country with exorbitant medical costs and an austere public health care system, while simultaneously masking the need for reform. Further, crowdfunding sites like GoFundMe create a perverse “marketplace of compassion” that forces the sick to neatly package their suffering and compete with other ailing people for resources.
The American health care system is largely privatized, with most people receiving their insurance from private providers, often through their employer. Public health insurance is provided to certain qualifying subsets of the population through programs like Medicare, a federal program for those 65 and older, and Medicaid, a joint federal and state program for low-income families, pregnant women, and people receiving welfare, which was expanded in many states as part of the Affordable Care Act. In comparison to other developed nations, however, public insurance coverage is less robust, and health care relies on a model that is largely market-driven.2
Repeated cuts to public insurance since the 1980s have left many Americans either uninsured or underinsured.2 Though the passage of the Affordable Care Act has reduced the number of the uninsured, these costs are reflected in the average deductible of $2,550 for plans under the act, which is almost as much as the take-home pay of the average American worker.3 Worse, deductibles under all plans have increased eight times as quickly as wages, partially a result of the United States having the highest overall health care costs among developed nations. Consequently, many of those with insurance still feel as if they can’t use it because of the exorbitant expenses, and those who do often wind up in debt. In fact, underinsured people are just as likely as the uninsured to struggle with medical debt, and are just as likely to be unable to seek out necessary treatment.
The austerity of public insurance combined with costly treatment can lead to financial difficulties, especially for the sickest members of the population. Sixty-two percent of all bankruptcies in the U.S. are medical in nature.2 Among cancer survivors, one third are in debt from the expenses incurred during their illness, and almost half of those diagnosed with cancer between 2002 and 2012 had run out of money in just two years.4 Perhaps most nauseatingly, 45,000 people die every year in the United States because they do not have access to health care. In circumstances such as these, where life hangs in the balance as the sick search for ways to finance life-saving treatment, GoFundMe has become a “negative-space portrait of our country’s teetering medical finances.”4 It is an archive of personal narratives with heart-wrenching twists that desperately seek to capture our fleeting attention.
The stories that succeed in this, however, tend to gravely misrepresent the actual state of affairs on the platform. Despite the occasional viral campaign of a family avoiding bankruptcy through the generosity of strangers, 90 percent of GoFundMe pages never reach their stated goal.3 In fact, the average GoFundMe earns less than $2,000, and it is uncommon for the number of contributors to reach triple digits.3 This discrepancy in donations intimates the true nature of GoFundMe: a marketplace in which the needy have to sell their desperation to willing buyers, producing “winners and losers just like any other marketplace”.3
Though one might suppose that such a marketplace would allow for the efficient allocation of resources, the success of campaigns tends to be a greater indicator of the relative wealth of one’s social network, rather than need alone.1 Consequently, economic and racial inequalities often manifest themselves in donations.3 This is not, of course, an indictment of donors kind enough to spare money for those in need. GoFundMe as a platform for such displays of kindness, however, perverts our innate understanding that no one is more deserving of basic medical care than anyone else. Such a repository of pleas-turned-popularity contests tacitly assents to this notion, and normalizes the “Dickensian” selection of who is the most deserving of care.
In this marketplace, success is entirely dependent on molding one’s story in a way that is palatable to prospective donors, which not only forces the sick to crudely narrativize their complex experience, but can indulge and legitimate our worst neuroses about illness. Successful campaigns on GoFundMe often share a formula, where the “clearly deserving” beneficiaries are suddenly struck by an illness which is “debilitating, urgent, and not their fault.”1 This immediacy of language is necessary because crises tend to garner more donations than chronic issues, likely owing to the wide appeal of “Shakespearean” story arcs, in which tragedy is closely followed by epiphany.3 Campaigns are read with a sort of “anticipation of retrospection,” in that the writer is expected to tell their story in such a way that conflict is neatly resolved and that the reader will be brought to a satisfying conclusion. However, this neglects the unsavory reality of illness, insofar as “suffering … most of the time, [is] not charming.”3 The necessity of conforming to this agreeable story rubric disadvantages campaigns for particularly unglamorous conditions, meaning that people with issues such as lupus, Crohn’s disease, or fibromyalgia earn less than those with conditions that better fit the tragedy-epiphany format.
Another consequence of this expectation is that it solidifies the anxieties surrounding illness, which manifest themselves in stigmatizing moral judgements. Author John Green comments, “viruses do not have a moral compass, and we have long pretended as if they do because we want life to be a story that makes sense.” That debilitating illness can strike anyone at anytime contradicts the premise that generally, good things happen to good people. To preserve this notion and, by extension, assuage fears of random, senseless misfortune, the predicament of sick people are justified through critical appraisals of their moral essence, thereby creating stigma (traditionally defined as a “mark of moral disgrace”). A cycle is then created, wherein the fear of illness is compounded by the fear of stigma, and moral judgements are reinforced. On GoFundMe, this phenomenon is apparent in campaigns for highly stigmatized diseases languishing far behind their stated goals. Conditions related to STDs, addiction, or obesity often struggle to raise money, much like chronic diseases. Clearly, the prejudicial wisdom of the crowd deviates significantly from what is self-evidently true: perceived heroism or narrative appeal should not be a qualification on care.
Considering GoFundMe’s faults as a means of financing medical care, the speed at which it has been institutionalized as part of American health care is alarming, not least because this integration could be regarded as recognition of GoFundMe as a viable alternative to insurance. The consequence of the proliferation of medical crowdfunding, it seems, is quiet invalidation of health care as a right. When competition for what are “essentially scraps” becomes the norm and crowdfunding is seen as an appropriate solution, it makes reform appear unnecessary.1 The inherent atomization of crowdfunding is also problematic in this sense, insofar as what is seen is only the story of the individual, and not their issues in the broader context of all those who similarly struggle. Writer Nathan Heller observes this issue, noting, “the risk in giving medical aid on the basis of stories is that the theatre of change trumps actual systemic reform; the guy with resources helps an ailing friend, or donates to a stranger whose experiences resonate, and believes that he’s done his part. Meanwhile, the causes of the problems go untouched.”4 The sense of fulfillment and solidarity derived from altruistic acts can belie the deeper issues that necessitated such acts, thereby making necessary reform more difficult.
The shape of such reform is debatable, but it is clear that the current system, which violates basic human decency by forcing the sick and needy to compete with each other on crowdfunding platforms for basic care, is untenable. In the words of writer Luke O’Neil, “A single person dying for lack of health insurance or enough money to pay for care is a tragedy. Tens of thousands of them dying every year is a Black Mirror-esque nightmare.”7 A common rejoinder to such an argument is that designating a resource as a human right does not render it immune to scarcity, but the many developed nations with greater public insurance coverage and more affordable care with equal or superior health outcomes are obvious counterexamples, and highlight the indefensibility of the comparatively austere U.S. system. Still, actualizing needed change means connecting the dots between the hundreds of thousands of people who turn to GoFundMe every year when they are unable to cover the costs of life-saving treatment, and the markedly small role of the U.S. government in health care, which leaves nearly half of all Americans either uninsured or underinsured. Until there is reform, however, the dark irony of medical care in the U.S. will be the compulsion of the sick to engage in a cruel and perverse competition for resources that pacifies what would otherwise be outrage at a landscape where life-saving treatment is regularly inaccessible or sends patients spiraling into debt.
Sources
Monroe, Rachel. “When GoFundMe Gets Ugly.” The Atlantic. Atlantic Media Company, October 9, 2019. https://www.theatlantic.com/magazine/archive/2019/11/gofundme-nation/598369/.
Berliner, Lauren S., and Nora J. Kenworthy. “Producing a Worthy Illness: Personal Crowdfunding amidst Financial Crisis.” Social Science & Medicine 187 (2017): 233–42. https://doi.org/10.1016/j.socscimed.2017.02.008.
Marche, Stephen. “Sick. Uninsured. And Begging the Internet for a Lifeline.” Mother Jones, January 8, 2018. https://www.motherjones.com/politics/2018/01/go-fund-yourself-health-care-popularity-contest/.
Heller, Nathan. “The Hidden Cost of GoFundMe Health Care.” The New Yorker. The New Yorker, June 25, 2019. https://www.newyorker.com/magazine/2019/07/01/the-perverse-logic-of-gofundme-health-care.
Zdechlik, Mark. “Patients Are Turning To GoFundMe To Fill Health Insurance Gaps.” NPR. NPR, December 27, 2018. https://www.npr.org/sections/health-shots/2018/12/27/633979867/patients-are-turning-to-gofundme-to-fill-health-insurance-gaps.
Khazan, Olga. “Americans Are Going Bankrupt From Getting Sick.” The Atlantic. Atlantic Media Company, September 3, 2019. https://www.theatlantic.com/health/archive/2019/03/hospital-bills-medical-debt-bankruptcy/584998/.
O'Neil, Luke. “$50 Could Have Saved Him, but His GoFundMe Pitch Didn't Get the Clicks - The Boston Globe.” BostonGlobe.com. The Boston Globe, March 7, 2019. https://www.bostonglobe.com/ideas/2019/03/07/could-have-saved-him-but-his-gofundme-pitch-didn-get-clicks/44416Uyhl0XUfDRIxE5SlI/story.html.
Kale, Sirin. “When Survival Is a Popularity Contest: the Heartbreak of Crowdfunding Healthcare.” The Guardian. Guardian News and Media, May 20, 2019. https://www.theguardian.com/lifeandstyle/2019/may/20/when-survival-is-a-popularity-contest-the-heartbreak-of-crowdfunding-healthcare.
Crosby, Christina. A Body, Undone: Living on after Great Pain (New York, NY: London, 2017).
Green, John. "End the Stigma". YouTube. YouTube, 2019. https://www.youtube.com/watch?v=kGysION6qAI.
McClanahan, Carolyn. “People Are Raising $650 Million On GoFundMe Each Year To Attack Rising Healthcare Costs.” Forbes. Forbes Magazine, August 13, 2018. https://www.forbes.com/sites/carolynmcclanahan/2018/08/13/using-gofundme-to-attack-health-care-costs/#2aa6c08f2859.
“Nearly Half of All American Adults Are Uninsured or Underinsured,” United Policyholders, September 20, 2014. https://www.uphelp.org/nearly-half-all-american-adults-are-uninsured-or-underinsured.