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The Ethics of Medical Crowdfunding and Why Most Campaigns Fail to Reach Goal

Amber Buskirk Gofundme

Some interesting stuff out of the University of Washington Bothell this week says although more and more Americans are turning to sites like GoFundMe to cover their medical bills, the majority of those campaigns don’t reach their goals:

A study published February 8 in the journal Social Science & Medicine reviewed 200 GoFundMe campaigns for health care expenses from 2016, finding that 90 percent of them did not reach their financial goal, netting just 40 percent of their goal on average. About 10 percent of campaigns in the study raised less than $100.

A recent BuzzFeed piece on the politics of crowdfunding healthcare costs sheds some light on why this might be, and it all comes down to marketing, or lack thereof:

This paradigm sets up a dangerous expectation in which giving is contingent upon being moved, entertained, or otherwise satisfied with the righteousness of a fight. I’ll give, this arrangement suggests, but only if you give something to me — tears, sadness, hope, cuteness — first. As Jeremy Snyder argues in the Hastings Center Report, this paradigm also creates a “strong incentive to sensationalize or embellish their stories in order to receive donations,” in part because the narrative has to be striking enough to compel individuals outside of one’s existing social network to give. You’re not just selling to your family members, in other words — you’re trying to sell to the entire internet.

What this means is that in order to have a successful crowdfunding campaign, not only do you need a compelling need but you need to present it in a compelling manner. It’s not enough just to have cancer, you have to be able to tell the story of your cancer. You have to move hearts. You have to somehow reach through a laptop screen with your hand outstretched to say hey stranger, I know we don’t know each other but don’t you feel bad for me? It’s the modern day equivalent of a corner bum holding a “will work for food” sign, only without the stigma associated with panhandling.

That hasn’t always been the case. When GoFundMe first launched in 2010, campaign organizers came to the Internet with their head down and tail tucked between their legs, meekly confessing that they needed help. Sure, you’d get the occasional outrageous request, but for the most part the site was full of humility and, dare I say, even shame.

Nowadays, people have no problem asking the Internet for money. In fact, crowdfunding has become a routine part of our lives. There’s a reason I say GoFundMe is the new obituary, it seems no one can die these days without one.

But GoFundMe and sites like it aren’t a piggy bank. Just because you ask doesn’t mean you’ll receive, as the UW Bothell study found.

And then there are the wildly successful campaigns. A 2015 Atlantic article profiled a couple whose infant son had been diagnosed with the rare genetic disorder hyper IgM syndrome. Their son would need a bone marrow transfusion, and his dad would have to quit his job to care for him full-time. Insurance would cover just a part of the boy’s necessary care.

So the family created a YouCaring campaign, which quickly raised over $50,000 from family and friends. The goal was $250,000.

And then it went viral. The Atlantic says:

[I]n July, The New York Daily News published a story on the Zablockis’ fundraiser; over the course of the next week, CBS, ABC, and NBC all ran stories on the family’s struggle to pay for Idan’s treatment. The money began pouring in even faster.

“At that point, there were a lot of people donating that we didn’t know who they were,” Akiva said. The media attention “was a huge bump as far as the legitimacy, because there are so many medical fundraisers out there.”

Which sometimes made him and Amanda wonder: Why had Idan’s been the one to catch on? “We were always trying to figure that one out,” he said. “Over those few weeks when there was the most attention, we were like, ‘Why is everybody so interested?’”

So even if your campaign takes off, you might still be left wondering why. Why you? Why your particular need?

Well, the UW Bothell study addresses that:

The study found that crowdfunding platforms give an advantage to users with skills in self-marketing, social media and video production. People with the most complicated and least-hopeful medical problems tend to have the hardest time raising funds.

In short, the researchers say, the rise of medical crowdfunding reflects — and potentially worsens — inequities already at play in the United States.

“We found that a good campaign has to do with solvable problems and so-called good investments,” said co-author Nora Kenworthy, assistant professor of nursing and health studies at the UW Bothell.

“Those are not the same values that an equitable health system is based on. These sites are being asked to fill in the gaps in system, but they’re only filling gaps for people who have solvable needs.”

This opinion piece in Stat addresses why those inequities can be so problematic:

Other factors, such as the recipient’s physical appearance, social connections, ability to get media attention for the story, and online communication skills are also likely to affect a campaign’s success. If those characteristics are correlated with the recipient’s position in society, then medical crowdfunding will have a tendency to benefit mostly those who are already in a relatively advantaged position.

In other words, if you have the skills required to create a compelling crowdfunding campaign, then you likely have a huge advantage over people who may be in greater need and are unable to translate that need into a successful campaign.

As the UW Bothell study abstract states: 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.

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