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3 Myths About Crowdfunding for Medical Care

Very few of these efforts raise a significant amount of money, and rarely do donations go to the neediest people

By M.P. Dunleavey

On the face of it, using a crowdfunding platform to help cover the high cost of medical care seems smart — especially if your insurance has left you facing a pile of bills.

Why not use the power of a socially driven, digital platform like Kickstarter or GoFundMe to share your situation with the wider world — and get help covering those out-of-pocket expenses?

Headshot of a woman with red glasses. Next Avenue, Crowdfunding, healthcare
Nora Kenworthy

The stories of people who have raised hundreds of thousands of dollars via crowdfunding sites are the stuff of legend (or at least viral TikToks). Research shows that health care-related campaigns on GoFundMe alone skyrocketed from about 8,000 in 2011 — to roughly 200,000 in 2020.

Nora Kenworthy, an assistant professor at the University of Washington Bothell, doesn't dispute that crowdfunding has helped many people. But in her new book, "Crowded Out: The True Cost of Crowdfunding Healthcare", the health policy researcher argues that the seeming success of medical crowdfunding is not only misleading — it perpetuates many of the problems it purports to solve.

Next Avenue recently spoke to Kenworthy on the topic. The interview has been edited for length and clarity.

A Brief History of How We Got Here

Next Avenue: Most people associate crowdfunding with startup companies or supporting someone's film. When did crowdfunding for medical bills become a thing?

Nora Kenworthy: Crowdfunding platforms emerged about 15 years ago, after the financial crisis, when the gig economy took off. At first, they were locally based. People used them to raise money for their kids' soccer team and things like that.

"People immediately started using the site to raise money for medical bills."

But when I interviewed the CEO of FundRazr, one of the first crowdfunding startups, he said people immediately started using the site to raise money for medical bills. They were kind of shocked. So, using crowdfunding for medical expenses was always part of the picture.

And it just kept going. By 2020 — even before the pandemic — about 20 million Americans had used a crowdfunding source to raise money for medical bills, according to the National Opinion Research Center.

Yes, it was a confluence of factors. After the financial crisis, the Affordable Care Act was passed, which did lower the number of Americans without insurance. But the high cost of premiums and co-pays meant that many people still couldn't afford to pay for necessary treatments. And the rise of the gig economy meant that more people had contract jobs without an insurance safety net.

So it makes sense that some people felt that they had no choice but to try crowdfunding. But your research shows that it's harder than it looks.

Myth #1: Crowdfunding Will Help You Pay Your Medical Bills

Right. The biggest myth about going this route is that you're going to raise a lot of money. As I describe in the book, about 90% of campaigns don't meet their goals.

In 2020, my colleague Mark Igra and I studied the largest collection of U.S. GoFundMe campaigns to date, and we found that the median medical campaign raised $265 from five donors. A third of campaigns got no donations at all.

"The same factors that make crowdfunding so appealing and so popular are also undermining our ability to support a more equitable health system in the U.S."

Wow. Why do so many campaigns fall short?

There are a number of reasons. One is the phenomenon of people setting up crowdfunding campaigns, and then not sharing them with their social networks — because they feel a deep sense of shame, especially with people they know. So they kind of put it out there and hope some stranger finds it. But that's not how successful crowdfunding works.

People like to think that crowdfunding is just a technological extension of what communities have always done: barn raisings, bake sales, church suppers. But crowdfunding depends on social media. And once people's stories are running off the engine of social media platforms, they're subject to the inequities embedded in those platforms. Now an algorithm drives what gets attention and what doesn't.

So you might have a great story and truly need help, but you have to play to the algorithm in order to get noticed.

Myth #2: Anyone Can Start a Medical Crowdfunding Campaign

Right, and that gets to another myth: that crowdfunding is super easy to do — that anyone can tell their story and people will find it and want to help. But crowdfunding requires a lot of technical, digital skills that many people don't have — including older adults. Not to mention, very few people have 20,000 followers on Facebook, or would know how to manage that kind of following.

For older people, it's not necessarily a lack of knowledge. But older people tend to have smaller social networks, and there are real generational differences in people's comfort level around sharing the kind of personal information typically required to be an effective fundraiser.

"Crowdfunding requires a lot of technical, digital skills that many people don't have."

I've talked to folks who tried to set up a campaign for a parent who was really in need. But they end up pulling their hair out because their parents don't want to share anything about how they're having financial difficulties — to them, that's just shameful.

And the odds are steeper for older folks in some ways, because they often have chronic conditions without straightforward solutions.

One of the hurdles I've seen with campaigns for older people is that it's really hard to build a crowdfunding campaign around a message like: 'I need money for long-term care every month, probably for the rest of my life.' That's harder to solve with crowdfunding.

Also, people don't want to be judged, and there is a lot of judgment when it comes to who we believe deserves our help.

I think if we're really honest with ourselves, we'd have to admit that we judge people who are down on their luck. And I think that comes from deeply held social mores about "selective deservingness." We've set up a moral system here that makes people feel like it's their fault for being poor or disadvantaged — or it makes us internalize the idea that people of certain racial, ethnic, or socio-economic groups are less deserving of help than others.

For example, in places with higher medical debt and less health insurance — which tend to be poorer, and in communities of color — people actually get less from crowdfunding than people in places that have better health coverage. So we can see how the inequities that are baked into this tool are inhibiting it from being able to help people to fill in the actual gaps in the system.

Myth #3: Crowdfunding Is for Anyone and Everyone

So how does that notion of selective deservingness crowd out certain people from the crowdfunding arena?

You'll sometimes hear crowdfunding referred to as a tool for democratizing charity — this idea that we all can get equal votes. But that really is a myth. In Western countries we have a long history of embracing very selective notions of who deserves charity and assistance and who doesn't. So this idea of selective deservingness becomes a filter for how people tell their stories — and how people judge those stories.

It's also pretty shocking to see how other biases — race, class, gender — also influence crowdfunding campaigns. It's not democratic at all.

I think there's a couple things going on there. One thing is the incredibly large racial wealth gap that we have in the United States. This shapes the kinds of socially networked wealth that people are able to tap into when they're appealing to friends and family for help. If your network is substantially economically disadvantaged by historical racial wealth inequities, you're going to have less to draw on.


Then the other phenomenon that's going on here is the racial discrimination aspect of things. So, with two co-authors, Aaron Davis and Shauna Elbers Carlisle, we pulled the most successful medical campaigns from GoFundMe in 2020 — about 900 campaigns that had raised $100,000 or more.

We wanted to know more about these success stories: Who are they?

"What was really striking was the profound absence of people of color — and in particular, Black women."

And it was not what you expected.

Not at all. The most successful campaigns tended to be young and white; often people with cancer. There were more men than women — which is different from what you'd usually see.

But what was really striking was the profound absence of people of color — and in particular, Black women. In that whole sample of 900, we could only find five campaigns that were for Black women, and two of those were started by white people.

So the systemic inequities we see in society at large are playing out in the world of crowdfunding for medical care.

And the same factors that make crowdfunding so appealing and so popular are also undermining our ability to support a more equitable health system in the U.S.

That's not to say crowdfunding can't help certain people. But when we look at it at a systemic level, crowdfunding is not fixing our health care system. The health system gaps and social support gaps are driving people to these platforms — along with toxic moral ideas about selective deservingness or the power of the marketplace, values that are antithetical to setting up a more just health care system.

Bookcover of Crowded Out by Nora Kenworthy. Next Avenue, Crowdfunding, healthcare

If you look at fairer health systems around the world, they're grounded in the belief that everyone has a certain level of foundational deservingness, that they deserve certain basics and have certain basic rights to health care.

Shifting Focus to Upstream Solutions

The idea of taking on health care system reform is daunting, but maybe there are things we can do in the day to day.

I think it's good for us to think about where we spend not just our monetary resources, but also our time and our energies.

One of the arguments the book is trying to make is that crowdfunding really focuses on these very downstream, last-chance interventions. Yes, they're urgent and people need them, but also: If we had been able to focus our energies and our attention and our resources further upstream, and fix some of these gaps in the system earlier, that it's a much more efficient use of our resources.

Just to give one example: The $20 or $50 that you might give to someone on a crowdfunding platform could go even further if you gave that money to a community health organization doing prevention work or trying to get people connected to health insurance. So, there's other things that we can do, and those can sit alongside crowdfunding. But ultimately, I think we have to keep focusing our attention on upstream solutions.

M.P. Dunleavey
M.P. Dunleavey writes about life and money, as she has for many years, in countless publications (and a book). She lives in New York City with her family and two cats. Read More
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