I’m part of the 63 percent of Americans who don’t have money to cover an emergency costing $500 or more. I don’t own a car or a house, so in the unlikely event of the aforementioned emergency (knock on wood for me, please), my personal crisis would be health expenses uncovered by Medicaid. Like the people you’ll meet in the following stories, I too would turn to crowdfunding.
Everyone, in my opinion, deserves healthcare coverage, and crowdfunding shines a spotlight on the insufficiency of the United States healthcare system. It also demonstrates that the internet is far from democratic. Crowdfunding takes time, energy, and a knack for marketing. Not everyone has these privileges or skills, and when it comes to paying medical bills or seeking life-saving surgeries, that chasm can be fatal.
1. “Sometimes, It Does Hurt to Ask” by Caitlin Cruz (Digg, January 2017)
Just today, a trans man I follow on Instagram posted a picture of the letter he received in the mail saying his health insurance would not cover his top surgery. For trans and gender non-conforming people, the cost of life-affirming medications and operations are steep—financially, physically, and spiritually. According to GLAAD, 19 percent of transgender people don’t have any form of health insurance. Hormone therapy and gender confirmation surgeries can cost tens of thousands of dollars. Instead, many trans people have turned to the internet, using PayPal donations or hosting YouCaring or GoFundMe campaigns, to ask their friends, families, and total strangers for financial assistance.
2. “Is It Fair to Ask the Internet to Pay Your Hospital Bill?” by Cari Romm (The Atlantic, March 2015)
Donating to a medical crowdfunding campaign requires donors to be at once more intimate with and more judgmental of the recipients. At its most basic and most callous, the act of giving boils down something not unlike comparison shopping: Who, out of all the people who have shared their tragedy on the Internet, is the most deserving of money? And, before that, who can entice donors to click?
As medical crowdfunding has become more popular, so too has the idea of its so-called “perfect victim,” said Margaret Moon, a bioethicist and professor of pediatrics at Johns Hopkins University: the person whose inability to pay for their care came down to sheer bad luck—and bad coverage, if they had any insurance at all. “They’d done everything right, they’d explored all the possibilities and were still left short,” she said. “The people donating to these sites don’t know if somebody’s made a request because they just couldn’t figure out their insurance, or because their insurance failed them. Wouldn’t you be more willing to donate to someone who had played out their insurance?”
3. “Who Should Pay for Evan Karr’s Heart?” by Anne Helen Petersen (BuzzFeed, March 2017)
Evan Karr is a a precocious 13 year old Kentuckian who was born with tetralogy of Fallot, a heart defect. Evan has had three heart surgeries, and at the top of Petersen’s story, he’s gearing up for a fourth.
4. “The Real Peril of Crowdfunding Health Care” by Anne Helen Petersen (BuzzFeed, March 2017)
Most of the successful campaigns on a crowdfunding homepage fall under the rubric of “fighting unfairness,” a designation that expands to include one of GoFundMe’s most successful campaigns of all time (for Standing Rock) but mostly signifies struggles against diseases that seemingly strike at random: cancer, genetic disorders, and other afflictions ostensibly out of the victim’s control. Such conditions are often referred to as “faultless.”
It’s far harder to fund so-called “blameworthy” diseases—addiction and mental health in particular—that are popularly conceived as either the fault of the victim or somehow under their control. You rarely see campaigns for adult heart disease, for example, or “getting my life together as a single mom”—both are viewed as the result of “choices” instead of “needs.” If there’s already a hierarchy of affliction and need in this country, then crowdfunding often works to exacerbate it.
5. “Go Viral or Die Trying” by Luke O’ Neil, Esquire, March 2017)
Luke O’Neil’s feature for Esquire opens with an anecdote about Kati McFarland, a 25-year-old young woman with Ehlers-Danlos syndrome who turned to crowdfunding to offset the cost of medical care. McFarland garnered national attention when she confronted Sen. Tom Cotton about his perspective on the Affordable Care Act.
After reading several of these crowdfunding stories, I was feeling a little jaded. I couldn’t help but cringe at the following, from YouCaring’s director of online marketing:
“The secret prize for people who raise money on the site is they find out how much people care about them,” says YouCaring’s [Jesse] Boland. “The money is the primary ask but they end up being better off for having connected to their community, so they get a sense of peace and belonging.”
O’Neil also spoke to editors from Gizmodo, Uproxx, Upworthy, and the Washington Post about their experiences studying and spotlighting viral campaigns.
6. “Kickstarting a Cure” by Noah Rosenberg (Narratively, July 2013)
Jimmy Lin is the founder of the Rare Genomics Institute, which he describes as “Amazon-slash-Kickstarter for science.” Lin’s organization matches families with researchers and geneticists from RGI affiliates and helps them raise money to cover the costs of expensive tests:
“The biggest thing we talk about with our team is, ‘If this was our child who was sick, what extent would we go to to help them?’” Lin says of RGI’s efforts. “If this was our kid that was sick, this is exactly what we’d do.”