Libby Watson ,eroticism, death, spirituality by bataille May 24, 2024

When Health Care Crowdfunding Fails

A conversation with Nora Kenworthy Pexels/The Baffler

If you wanted to break my brain as quickly as possible, you would only have to strap me into an Oculus headset and set the browser to scroll through the thousands of medical GoFundMe campaigns that are active at any given time. I’d be toast in an hour. The platform is a horrifying wasteland of people in desperate need of solutions to problems that would be largely nonexistent in a country with a humane health care system, people whose hopes of success are dim and who feel guilty, somehow, for even asking. A new book, Crowded Out: The True Costs of Crowdfunding Healthcareby Nora Kenworthy, an associate professor of nursing and health studies at the University of Washington, Bothell, explores the dark realities of this phenomenon in impressive detail. Backed by data about what types of campaigns go viral and interviews with individuals who raised money for health expenses for themselves or others, Kenworthy makes a compelling case that health care crowdfunding creates what she calls “moral toxicities”: “harmful ideas” about health and morality which “suffuse our environments and can harm our health” in the same way that actual toxins do. These toxicities are familiar and thoroughly American—“rugged individualism” and “selective deservingness” are both destructive concepts, yet deeply engrained in the assumptions of our health care and welfare systems.

Over Zoom, Kenworthy and I discussed who actually manages to win this sick game, how GoFundMe benefits from selective honesty about its site, and what those “toxicities” do to us and our ability to develop genuine community. Our conversation has been edited for length and clarity.

—Libby Watson

Libby Watson: Who are the types of people whose health care campaigns do well, and who are the types of people who either don’t do well, or aren’t making the campaigns in the first place?

Nora Kenworthy: This is the million-dollar question, right? I often hear it asked as: What can I do to make my campaign successful? I want to flip that on its head and say, all campaigns are different. There are a thousand factors that go into them. However, at a population level, much like we can see other kinds of health inequalities, we can see inequalities between campaigns. The things that are most likely to go viral seem to be cancer campaigns for young white people. There are some very substantial race, class, and education dynamics. Typically, people who are from more educated, wealthier, and whiter backgrounds tend to do quite a bit better. We did a study that showed that Black crowdfunders earn more than $20 less per donation than white crowdfunders. We have also seen that in places where there’s higher community-level needs, whether that’s higher rates of Covid or higher rates of medical indebtedness, those places also tend to do more poorly with crowdfunding. As a solution, [crowdfunding] tends to prioritize and reward communities and people who have more power and resources and privilege, and tends to disadvantage people who actually need it the most.

LW: That’s definitely the key insight of the of the book, that those lofty ideas about democratizing and equalizing the way that money is spread out via digital crowdfunding sites like GoFundMe is just not borne out by the data on who gets the most money on the platform and who makes campaigns in the first place. The book is also really good at demonstrating that there’s something dangerous and seductive about that idea to begin with. People see a campaign, they donate, they get the good feeling, and they move on. We know about slacktivism, the ease of feeling like you are part of something by tapping a couple buttons on your phone. I tend to get a bit tired of boomers who talk about that because it seems like an easy thing for critics of the internet and of young people to say. But in this case, it’s true that there is this tension. You want to give money to help people, but in giving on GoFundMe, it’s very hard to ensure that you are not contributing to a system that is replicating terrible social ills. Most people have GoFundMes come to them; they don’t go to the website and think, I’m going to give to a GoFundMe today.

Maybe that would be the solution—when it’s time for me to give my charity this month, I’m going to go and find a GoFundMe that has $0 on it. But no one does that, and that’s not what the platform is for.

NK:First of all, it would be really hard to find those campaigns because of the way that the platform is designed. We’ve uncovered enough design elements that seemed to mask those campaigns and make them harder to find, which is not surprising; that’s the algorithm of a lot of social media. But I think it’s safe to say that’s probably contributing to these inequalities in outcomes.

The other thing that I found in my research is that when you do show people really unsuccessful campaigns, they often treat them with suspicion and disrespect. They’ll say, “Why don’t they have any donations, don’t they have a friend who can give them $10?” Or, “This person spelled all this stuff wrong, and they have bad grammar, so maybe they’re a scammer.” I think it very easily taps into our social mores, which are problematic, making assumptions about who is and is not deserving based on a lot of classism and racism and sexism and all the rest.

LW:This is going to seem like a weird parallel at first, but I’m a Twitch streamer. A few months ago, I went to TwitchCon to talk to other streamers, and everyone was obsessed with “discoverability.” The main thing that they were mad at Twitch about wasn’t that they take 50 percent of subscription income or anything like that; it was, what are you doing to get my stream on the front page? There is this idea, with Twitch and to an extent with GoFundMe, that the difference is a stroke of viral good luck. These platforms benefit by either explicitly encouraging, or at least not discouraging, the idea. So the question is, what responsibility do platforms like GoFundMe have to be honest about that kind of stuff, about the idea that millions of strangers are going to donate to your campaign if you just get seen? Your research shows that almost never happens.

NK:Certainly, a platform like GoFundMe benefits very heavily from a widespread notion that crowdfunding is easy, that it’s low cost, that anyone can do it, and that you can do it for any kind of thing. They’re a privately traded company, so they really don’t have to share much data with the public. We don’t know how much they make every year off campaigns. We don’t really have access to any of the backend data that might help us understand things, like who does end up on the front page. We don’t know how much time they spend not just promoting specific campaigns but actually putting a lot of resources into those campaigns. GoFundMe is also trying to craft and reshape its own brand.?It does that through cultivating certain types of crowdfunding and incentivizing it.

During Covid, they put a ton of their own money into starting and funding specific kinds of campaigns that they thought would be a positive reflection of the brand because they knew that they were going to benefit so much from this disaster and that people were really going to turn to the platform in need. So I think they have a responsibility, first of all, to share enough information with consumers so that they know what they’re getting into. At the same time, I think doing that would be pretty devastating to their brand. All I have is the data that we have; we’ve done some of the largest studies on GoFundMe to date. We find things like 40 percent of campaigns raised less than $70. Quite honestly, I spoke to so many people for this project who were profoundly in need and profoundly deserving and also not particularly successful. I think the nature of our U.S. health care economy is such that there’s far more deserving people out there than could ever possibly “win” at GoFundMe.

LW:If you went to the GoFundMe site, and all the campaigns it showed you were at $0, you would think you’d gone to the wrong website.

NK: Yes, and if your campaign raises $50 instead of $50,000, GoFundMe still gets some. They still get a percentage of that. When I talk to people who have less successful campaigns, they often comment about the fact that the small percentage that GoFundMe gets feels a lot more when you’re raising less money. There are some really interesting parallels between what you’re describing as the influencer economy, the gig economy, and then this charitable crowdfunding economy. There are striking parallels in terms of how hard it is to succeed, and how much emotional and intellectual labor and creativity goes into it, as well as how much it can feel outside of the creator’s control.

LW:That is something that comes up in the book: you talk about how to have a successful campaign, you really have to put it all out there, be very vulnerable, and leverage the drama of your situation. There are two things about that. One is that it can be really risky because it can backfire, and it can end up not being worth it if you only raise, say, $100. But the other thing is that, as with many aspects of GoFundMe, this strategy lends itself to certain types of illnesses. A chronic illness story is much less dramatic than a car crash story. Something that feels like a random, unfair, temporary, and fixable thing is totally different than saying, I’m going to have Type One diabetes for the rest of my life, and I can’t afford my drugs.

NK:Or something even more stigmatizing. I always tell people, you don’t see a lot of STDs on GoFundMe. There’s a lot of stigmatizing conditions out there that would be really hard to crowdfund for. I definitely think it rewards a certain type of crisis that is particularly likely to capture the attention and the wallets of a large social media audience. The other dynamic that’s happening here, and I think this is probably more pronounced than you would see with platforms where you’re just trying to get followers, is that most GoFundMe campaigns are tapping into your immediate network of friends and family—much like if you needed cash, and you started calling up your friends. But what that means is that the success of your campaign can really be determined by the disposable or loanable income of other people in your network. Most of us have friends who are like us, so if you are low income in the United States, it’s really likely that a lot of your family and friends are low income as well. That means you’re just tapping into a much smaller network of available funds.

LW: There is also this dynamic that you talk about, where the fact of someone’s campaign doing well, or not doing well, ends up being a reflection of not just how much they deserved it, but how good of a person you are. In the book, I think it was a local newscaster who was in a car crash, and his coworker was talking about, well, he’s just such a good guy, so of course he raised money. The flip side of that is, if you didn’t raise money, maybe you’re not such a good guy.

NK:And that’s a really damaging perception, and I think it’s really easy for us to begin to think that way when this is all around us. What that’s also doing is reinforcing this idea that only people who are exceptionally good people should get basic medical care, and need it, in our country. As I write about in the book, that’s a very old concept in our cultural history. But it’s one that’s caused a lot of pain and suffering for a lot of people who happened to find themselves in those very large categories of the undeserving poor, or undeserving Americans. There’s just a ton of racism and historical class bias that goes into a lot of that.

LW:It’s a cliché, but it’s a microcosm of America. There’s a part of the book where you wrote, the “moral economy” of GoFundMe is “temerity, grit, optimism, honesty, passion and hustle.” That’s a Western movie, that is 100 percent America: what America likes to think of itself, and the line we’re all sold. Which is not to say that people in other countries don’t like talking about the deserving and undeserving poor; British people love talking about benefits mums and stuff like that. But it did make me think that, even though this is now obviously a global phenomenon, there’s something very American about GoFundMe.

NK:I think so too. Crowdfunding has lots of different flavors in different places; there are super popular platforms in China and India. In the United States, its popularity does very much align with the moral ethos of the United States. That ethos can really undermine people’s willingness to turn to crowdfunding in a lot of situations. I would say, besides gratitude, the most prominent emotional valence of GoFundMe is shame. It’s people feeling shameful about asking for help. I spoke to people like Trevor, who I write about in the book, who said, I was in need, and I went around, I did this research, I tried to figure out what was happening on crowdfunding, and I was like, who’s going to fucking support me? He ends up pulling himself out of the marketplace and not putting himself out there. I talked to so many people who had started campaigns for loved ones for friends, who were very familiar with this economy, who thought they had this great experience with crowdfunding, and at the end of the interview, I’d say, “Well, would you ever use crowdfunding for yourself?” And they’d say, “Oh, my God, no.” The flip side of that temerity, grit, pull yourself up by your bootstraps thing is also, don’t actually ask for help.

I do think it’s changing the ways that Americans think about deservingness and charity, and their social rights. It reinforces this idea of a highly individualized and hierarchical system of care for other people that is very much antithetical to the moral underpinnings of what we would want a equitable health care system to be, where you don’t just get diabetes treatment because everyone thinks you’re a good guy; you get diabetes treatment because you have diabetes.

LW:Obviously, it’s not up to you to fix this. But it’s very hard to imagine solutions without having a single-payer health care system, and I feel like that must make it so much harder to write about.

NK:I’m in public health, so I’m quite steeped in what the problem is. But I also think that part of the reason that crowdfunding is popular is because it appeals to our sense of wanting to do something. That becomes a really interesting, challenging question: First of all, what can you do with crowdfunding? But then, what else can you do besidescrowdfunding? I tried to think about crowdfunding as a tool. Like other kinds of technological tools, it can be wielded in different ways. We have a lot of examples of community networks using crowdfunding campaigns and having a lot of success for these large solidarity-building efforts. Like many other technologies, the technology itself can sometimes curtail the imagination of what we can do with it. It informs how we behave. It incentivizes certain ways of interacting with it, and it disincentivizes certain others. There is this growing, sort of knee-jerk reaction to any crisis of like, Oh, I’ll send you five bucks. It has us missing out on a lot of other opportunities to engage in community-building and community-sustaining work that is sometimes more time-intensive, sometimes harder, sometimes messier, doesn’t always just involve cash. But when we do that other kind of work, we’re essentially building the muscles and the relationships that then sustain us through other kinds of activism.

LW:Politically, we’re in such a depressing, rudderless era. It’s been so long since the changes we need even felt like a remote possibility. It’s no wonder that people are able to at least satisfy the guilty part of their brain by being like, well, I’ll donate to the GoFundMe when I see it.

NK:It’s important for me to also note that in marginalized communities that rely on a lot of community care, crowdfunding can also be a really important lifeline. For example, I’ve had a lot of folks in the trans community talk about how important crowdfunding was and has been for building resources to get gender-affirming care. But there’s also a lot of community behind that, a lot of existing community. I do think that crowdfunding is something that people tend to turn to when they feel that there aren’t other things that they can do, whether it’s about an unexpected cancer diagnosis, or climate-related catastrophes, or feeling politically powerless about the kinds of health care systems we have in the United States.

LW:No wonder it’s the social tool of last resort, because we are at a last resort point.

NK:And social tool of last resort is a very different way of thinking about it than how GoFundMe and other platforms will present themselves. GoFundMe calls itself “the take action button of the internet.” I think it’s important to contest that notion of it.

LW:The fundamental fact that this platform exists and is such a huge fundraising tool for the most basic stuff is already so bad.

NK:Yes. In the process of this research, I spoke to so many people who were in these profound, unwanted crises in their lives. And it wasn’t just about the hospital bills; it was about the gas money to get to the hospital, and childcare, and not being able to retrofit their house so they can get a wheelchair into it. There are so many associated costs with illness in the United States that are just breaking people. Unfortunately, a lot of times, they’re swept under the rug. In some ways, GoFundMe brings that out, so that’s interesting. But in other ways, it silences a lot of the more critical, complex discourse about what’s actually causing all this financial distress.

LW: I thought it was really interesting, this idea that asking for money for these associated expenses doesn’t feel as right as asking for money for drugs, or for very concrete medical costs. It may be that those other needs are actually much more significant and severe, especially if you have insurance, and your treatment is going to get covered, at least to some extent. But no one has “I need gas money to get to the hospital” insurance. And because these are just considered the costs of being alive, of having your shit together, they become even more embarrassing to ask for.

NK:And it’s the stuff that, if we had more robust communities, could actually be provided more for us. Like, let’s drive our friends to the hospital.

LW:Make each other lasagnas!

NK:Not that that kind of help is possible for everyone, but there are these accessory spaces of really profound need where I do think some more kind of community levels of care could happen.

LW:Yeah. Or government could do it. That would be nice.