Gofundme: one of the more popular online fundraising platforms.
Online crowdfunding is a relatively recent phenomenon where artists, philanthropists, and entrepreneurs can set up a website through companies such as GoFundMe or Kickstarter that will allow them to collect money either to pre-sell a product or as donations for a campaign. According to a 2015 survey of five of the largest crowdfunding sites, 41% of the campaigns were for medical debt.
Some other sources put that number even higher.
Even though some like to use crowdfunding for medical bills as a springboard to criticize healthcare laws, in the U.S., this type of online fundraising has spanned two different administrations. And, as The Atlantic points out, people are acquiring large amounts of medical debt regardless of whether they are insured.
Part of the reason for this is 44% of people cannot cover a $400 emergency without using credit cards or borrowing money. Most deductibles, even on government health insurance, are three times that much.
Plus, there are many additional out-of-pocket non-medical expenses such as meals, time off work, or childcare. (The Atlantic article also notes that even people from countries with single-payer healthcare are using crowdfunding for medical expenses.)
In this article, I would like to move past political debates about healthcare, and look at a couple of the ethical issues surrounding crowdfunding medical expenses.
There is something intuitively troubling about people engaging in what amounts to an online popularity contest where they market their own tragedies in an effort to raise needed funds for medical treatment. However, it is a little difficult to pinpoint exactly what is so troubling about it.
After all, the internet is a place where anyone can post anything, so why not use it let people know about opportunities to help others in need?
To help us unpack this unease, let’s look at a couple of examples that do not involve crowdfunding, but have some of the same troubling elements that crowdfunding does.
The first is a 2007 BNN network (the Netherlands) show that took the dark side of reality television to the next level by having a competition for a kidney.
Their show De Grote Donorshow (“The Big Donor Show”) involved a reality television contest in which a terminally ill thirty-seven-year-old woman had to decide which contestant with renal failure would receive her kidney based on the contestants’ backstory and other personal factors. The final three contestants vied for her favor. The public could have their say by voting via text.
The show ended up being a hoax to raise awareness for organ donation. However before the hoax was revealed, many people voiced their ire over such a tasteless concept.
The second example is when Steve Jobs received a liver transplant in 2009.
Jobs, before he died of pancreatic cancer, was able to receive a liver transplant from a donor in Tennessee even though he was living in California. By getting on several state organ donation lists, he was able to get an organ sooner than he would have on California’s waiting list. He could do this because he had the means to fly to the location at a moment’s notice.
The first example is troubling because it commodified a tragedy. The second example is troubling because it favored someone with more resources. Both situations are not illegal, and both are well-intentioned.
Which of us, if we had Jobs’ resources, wouldn’t do the same thing for ourselves or for a loved one? And we know from the large number of crowdfunding campaigns on sites like GoFundMe or YouCaring, the lengths people are willing to go, including abandoning any notions of personal and medical privacy, in order to get needed medical treatment. Displaying yourself on a reality television show is not hard to imagine.
Put more succinctly, the first example offends our sense of human dignity (before we knew it was a hoax). The second offends our sense of justice. There are some things that should not be gamified and there are something things that should be for sale (however indirectly). Crowdfunding for medical debt, or to get a medical procedure, has elements of both of these.
Crowdfunding plays by the same rules as any social media website. Successful campaigns tend to be the ones where the person has a large social network, is relatively young and good-looking, and has a compelling back story. Only about 11% of crowdfunded medical campaigns end up raising the money they need, and those 11% are not necessarily the people who most in need.
Having a large online social network is particularly important for a successful crowdfunding campaign. But, some people don’t have 1,000 friends on Facebook or Instagram or thousands of followers on Twitter. Certainly there are “tricks” to acquiring more followers, but those tend to come down to aggressive marketing and unashamed schmoozing.
Is it right or fair that people who have the best online social capital should, therefore, get their medical bills covered? Should something like healthcare be subject to the same rules as social media “success”?
As Jeremy Snyder points out in a Hastings Center Report, “Crowdfunding for Medical Care”, there is a strong incentive to exaggerate one’s tragedy to help one's campaign stand out from the rest. While these crowdfunding sites do not encourage lying, many of them encourage people to use language that creates “empathy” and to “inspire” people who come to their page.
In some cases, people have committed outright fraud, and were only caught because someone reported them. Even after being caught, they may not be punished for it.
In other words, the prize, in terms of money towards medical expenses goes to the person who is the best at marketing their tragedy, which sounds very close to emotional manipulation. Additionally, there is a direct correlation to socioeconomic status and ability to create a good online campaign, both because of access to resources and because wealthier people tend to have more connections.
Snyder says that this actually does more to enhance inequality in healthcare, not close the gap. Both of these touch on the troubling issues with “The Big Donor Show” and being on multiple organ donation lists.
Snyder also notes that success in crowdfunding campaigns is often the result of luck. For any number of reasons, a particular campaign will go viral, and once it does, donations will start pouring in. If the campaign gets media coverage, then that further helps the cause.
However, viral campaigns are not necessarily the most worthy. Take, for example, the 2014 potato salad campaign that raised over $55,000 in Kickstarter money because a guy wanted to make potato salad.
The reality is that good charitable organizations typically know best how to allocate funds so that those funds go to the people who are most in need. Often charitable organizations have expertise in a particular field, such as disease, disability, or disaster relief, and know where best to place those funds so they will have the biggest impact. Also charities tend to be more transparent about where your money goes.
In contrast, many crowdfunding sites take some percentage of funds as well as an additional percentage for credit card processing, but this is not always clear to people who donate.
Let’s take one medical example that rarely gets funded. Many people with mental health issues will self-medicate with addictive or illegal substances. Both mental health and addiction tend to do poorly as crowdfunding campaigns because of the stigma of mental health and addiction in our culture, even though many of these people desperately need assistance.
People are understandably wary of giving money to someone with a problem with addiction. Instead, it is often better for both the donor and the recipient to funnel funds through an organization that understands the particular needs that someone with mental health issues has.
Crowdfunding medical expenses sounds good in theory, but there are many reasons to be wary of this method for dealing with the very real problem of increasing medical debt.
Heather Zeiger is a freelance science writer with advanced degrees in chemistry and bioethics. She writes on the intersection of science, culture, and technology.
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