America’s NoFundMe Healthcare System

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Abdurrahman Alsayan.

I remember the first time I donated to a GoFundMe to cover someone's health care costs. It was the mid-2010s, and an old acquaintance from high school had posted on Facebook—yeah, Facebook— about her sibling, who had been diagnosed with terminal cancer. She was fundraising for home nursing support. I remember how good it felt to know that I had done my part to support someone in need. This, of course, was back when we all thought social media was a tool for good.

And the fact that I could share the crowdfunding link and encourage my friends to support, too, it made it feel like, if we all worked together, we could achieve this goal—and any goal. That combination of dopamine sources, the feeling of helping someone, and the notion that you can share your do-gooding with others— it's the special sauce that makes crowdfunding feel so good. And crowdfunding, on its own terms, is good. If you're raising money to send a baseball team to the tournament, or to buy a new toy for a child in need, it's awesome to be able to take advantage of that double dose of dopamine to do something really nice for people in your community. And that's probably why crowdfunding is as old as time.

In the past, it was neighbors passing a hat for the family down the street, or family coming together to chip a few bucks for the cousin down on their luck. Today, we've got glitzy websites that make that a lot easier—for a cut, of course. But back to my story, and why I'm sharing it with you here. In the comments on my post, a friend of mine asked the simple, obvious question. Isn't it sad that we have to do this to get a dying person some basic health care?

It really is. As of 2019,, a third of all fundraisers on GoFundMe were for health care. Their CEO was even named one of Time magazine's most influential people in health care. I want to read you what he told our colleagues at Kaiser Health News about this at the time. And I'm quoting here.

The system is terrible. It needs to be rethought and retooled. Politicians are failing us. Health care companies are failing us. Those are realities.

I don't want to mince words here. We're facing a huge potential tragedy. We provide relief for a lot of people. But there are people who are not getting relief from us or the institutions that are supposed to be there. We shouldn't be the solution to a complex set of systemic problems.

They should be solved by the government working properly, and by health care companies working with their constituents. We firmly believe that access to comprehensive health care is a right, and things have to be fixed at the local, state, and federal levels of government to make this a reality. So not even GoFundMe thinks that you should have to use GoFundMe for your health care. And yet, here we are. It'd be quaint to tell you that what's driving this is the greed of the health care system and the way that our politics aids and abets them at every front.

But I want to zero in on one aspect of this that is critical to understand. In the past, health insurance was just that, insurance, the operative part of the word being sure. Starting in the late 90s and exploding in the last decade, health insurance companies have started to introduce a concept they call, quote, cost sharing, meaning that you should be forced to pay for some of the upfront costs of your health care. They tout it as some sort of way to prevent runaway spending, forcing patients to have, quote, skin in the game. But this is health care we're talking about.

All of us literally have skin in the game. But under the guise of cost sharing, insurers have introduced things like co-pays and deductibles, costs that you pay for health care, despite already having paid for your health care in a biweekly or monthly wage garnishment. The deductible is a menace. As most of you know, it's an out-of-pocket cost. you have to pay before your insurance even kicks in.

Today, the average deductible for a family of four is nearing $4,000 a year. Considering that that average family earns about $80,000, you're talking about a whole paycheck. you have to pay for health care even though you already pay for your health care every single paycheck. And that deductible is a big reason why, in 2023, the median person who fell into medical debt was insured. People simply can't afford the deductibles that hit them.

And guess where they go? Yep, our guest today has been thinking a lot about crowdfunded health care and the ills it exposes in our health care system. Professor Nora Kenworthy is a professor of health studies and the author of the new book, Crowded Out, The True Cost of Crowdfunding Health Care, which is out today, and I hope you guys will check it out. She joined me to talk about the hidden costs of crowdfunding, the implicit biases in crowdfunding, and what it says about our health care system and our society. Here is my conversation with Professor Nora Kenworthy.

S.

, it's really common. Survey data shows that more than a quarter of Americans have started or given to a campaign specifically for medical costs. It's also pretty popular around the world. In places like China, India, Kenya, there are very popular, widely used crowdfunding platforms as well, and a lot of those are also used significantly for medical expenses.

. That's insane.

. I mean, everything in the pandemic was health-related, obviously, but it was a lot of need for help with rent and food and stuff like that.

I want to talk a little bit more about that. But one of the things that you talk about in your book, which, by the way, I really appreciate it because it's the right mix of storytelling and evidence that just makes my little America-dissected heart sing. So thank you for that.

You talk about this disparity in who can even access this. And it kind of makes sense, right? Because there's a pretty serious electronic overhead to be able to use one of these mechanisms. Can you talk about who has access and maybe who doesn't have access to this system of crowdfunding?

So they just don't have formal banking infrastructure. So that's the first barrier. I think there's a lot of literacy and tech literacy and also health literacy barriers here as well. It's true that a lot of people can start a campaign fairly easily, but to make one that is legible to large audiences, that is going to travel across different kinds of social media platforms, actually requires a lot of expert knowledge. that's hard for folks to marshal.

And then I think there's also the silent barrier, which became really prominent in my research, which is that we, as Americans, have a lot of shame around asking for financial help. And that shame is particularly prominent, unfortunately, in the communities that have the most financial needs. And so I can't tell you the number of times where I saw campaigns talking about things like, we just have to set our pride aside because we don't have anything else. We have nowhere else to turn. And I also talked to a lot of people who felt like they could never do that.

They could never do that for themselves, no matter how hard things got.

those are distributed in ways that tend to predict better access to healthcare. So the people who need these most are probably also the people who are most likely to have these barriers. And then one of the things that strikes me about this is, when you talked about that stigma and that shame that follows this, that stigma and shame that doesn't just exist, it's manufactured. And it's manufactured in a lot of the same ways that have led to a rolling back of a social safety net, which this tool is supposed to be able to adjust for, at least it's become an adjustment for. And so, you know, you see it sort of a double whammy in terms of how stigma and shame operate, both to rob people of access to basic healthcare, because in this country, you've decided that, you know, having access to the thing that keeps your body alive is somehow something you need to earn and deserve.

And at the same time, we're in this situation where, because we've said that to one another, when people have to come out and admit that they don't have the healthcare that they need, it says something about them or signals something about them in a society where that shame and stigma tends to be pervasive in ways that stop them from doing this in the first place. And that's, to me, I mean, it's just such a, it's just such a double jeopardy of sorts. And we also know that that operates, you know, quite differently in different communities. One of the things you've written about is that black folk, who, despite having substantially less high quality access to healthcare and substantially higher probability of falling through our very broken social safety net when it comes to healthcare, are far less likely to use tools like this. Can you tell us a little bit about what some of the folks you've spoken to have told you about how that shame and that stigma operates, particularly in the black community?

even when we do see black folks like starting campaigns, typically what we see is that those campaigns do not do as well. And I think there's a dual effect going on here. The first is the kind of structural effect of the racial wealth gaps in the United States that most people who are crowdfunding are tapping into networks of friends and family, and your networks tend to be like you, same kind of economic group, racial group. And so if you are making an appeal to your friends and family and there's just like a substantially smaller amount of wealth within that network, you're not going to raise as much. However, we also see this really pernicious kind of racial bias and discrimination that's happening on these platforms, much as it happens on other kinds of social media platforms.

So, for example, we took like the most viral medical campaigns. So these were like campaigns that were wildly successful, kind of like, raised over like $100,000.. And we were interested in just figuring out like who's here, right? Like who actually manages to like reach this tier of success? So we found about 900 campaigns that had raised over $100,000..

Five out of 900 were black. And two of those were actually started by white people.

So that just speaks to this tremendous sort of amplifying of social and racial biases that happens as these campaigns sort of travel through social networks and across social media.

And you really are only seeing and being seen by people who look and think like you, right? Either that, or people who look and think exactly the opposite to you, so that people who look and think like you and you can share a response to them, right? That's the trick. And so that means that, by definition, you're not really seeing folks who are not like you, and that changes things. One of the interesting sort of contrapositives of this, though, was that the people who give to these campaigns, you talked about 25% of Americans, people who give to these campaigns don't tend to be folks with the most means.

Can you tell us a little bit about that? Because it seemed to me to be like the other side of inequity on this point.

I think the other thing to understand, though, is just, like, the general statistics of how a typical crowdfunding campaign does is wildly different than what we perceive it to be, and that's exactly because of these social media dynamics that you're talking about, that we're more likely to see really successful stuff, we're more likely to see stuff that's getting picked up and spread and has news stories written about it. But research has shown that 90% of crowdfunding campaigns don't meet their financial goals. Oftentimes, those goals are even pretty low to start with.

You know, about 40% of campaigns raise less than $70.

. I mean, we're talking about very low earnings here as a kind of median experience. And so much like the U.S. economy in general, you have a very large group of the general population. that's kind of getting, kind of scraping by, right, if at all.

And then you have an extremely small, rarefied group of people who are earning the very large proportion of donations that are coming through on the site. Hmm.

We're taking care of each other, right? When there are other means for us to actually take care of each other, we just don't seem to want to do that when it comes to, like, you know, voting for candidates who actually want to reform our healthcare system. so we don't have to do this. But that's another story we'll talk about in a second. The other side of it, though, is to people who turn to this as a last resort, right?

And you gotta imagine, just like you reported, a lot of the folks who are doing this are saying, you know, I'm putting my pride aside. So it's already from a space of vulnerability that folks will come out and say, okay, this is my last ditch attempt to try and address this problem. And then the thing falls flat. And you can imagine when all the ones you've heard about have succeeded, you gotta ask, what's wrong with me? And you can imagine the insult that's added to the injury of still not being able to pay for the healthcare that you need to pay for.

You wrote about a gentleman you called Jim, who was trying to raise $2,000.

to crowdfund to avoid eviction. Can you tell us a little bit about him and his story, and what it tells us more broadly about the way this works?

And her friends were starting a campaign for her and sort of saying, we just don't want her to have to worry about anything. And then the second campaign was for this guy named Jim, who was disabled, whose son was disabled, and who was writing about how, if he couldn't raise the money for their rent by Friday, they were going to be living out of his car. And he was really worried that his son would not be able to survive in his car because of the specialized medical equipment that he had. And I thought when I was putting this together, I was like, this is obvious. This is too much of a dichotomy, right?

Of course, we're going to choose the people who might be homeless by Friday.

But I was really surprised that focus group participants had a much different read of this. Even when they had a lot of compassion for Jim's case, they also read it with a lot of suspicion. So they pointed out spelling errors. They talked about why didn't he plan? I mean, why is this happening so late?

Why didn't he plan ahead? Why is the picture not as nice as it is in this other campaign? And so I think it's important for all of us to reckon with the idea that we do bring a lot of judgments to the way that we look at other people's situations when they're in need in the United States. And I think that's cultivated by our highly marketized and privatized system, which has inculcated us with this idea that, you know, there's only certain conditions under which you're actually going to get real help in this country if you are sick or having a crisis. So, you know, I also talked to people with type 1 diabetes, who were talking about how they would get comments on their campaigns like, well, do you exercise enough?

Or like, are you eating the right foods? You know, and so there's this real kind of culture of blame and also like personal responsibility, shaming that, I think, does percolate onto these sites, even when people are well-meaning.

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I mean like,

you know, all of the same ills that drive us and one of the points that you make in the book, which I really appreciate, is that this reinforces what you call toxicities in our system. Can you share a little bit more about that and what you mean by that and why it happens?

So a highly individualist society that believes in a meritocracy where everyone's competing against each other to be like the most deserving tragedy case on the internet, is not a place where we're going to look at each other and say hey, you know what we all deserve healthcare, no matter like what our skin color and like what kind of you know health behaviors we've been engaged in. And so I really kind of see one of the dangers of crowdfunding as the way that it's shifting and reinforcing how Americans think about deservingness and about each other's rights as healthcare citizens.

it's like, listen, some of you will survive, some of you won't. but you know, we're gonna pick. we're gonna pick the ones we like the most. and I just I find it such a comment on what, what we've, what we've come to want to feel good about ourselves for, because the other part of this is we don't lament the ones that fail right, we just celebrate the ones that succeed. and for all the ones that you you highlighted that succeed, there are many others that fail, like you know, a disabled individual and his disabled child who are now going to be evicted like.

these are all stories that we've been exposed to by the same platform, and we're not lamenting that idea that, like this one, failed. instead, we're saying hey, look at this, you know, we provided funding for this, this, this, this individual who's been stricken by cancer, and that's great, except for like. why do we live in a society where we have to be hearing about this all the time and we could fix it, we could actually crowd fund it collectively. in fact, everybody would be a part of it and nobody would be left out. so all of this is to say that I find it deeply.

frustrating in the way that it's able to play to our instincts to do something, and it feels a lot like, do you remember and I'm aging myself here back when the internet was a questionable source of?

you know two friends who passed of it and I think we should be funding it substantially more. I would very much like the NIH to have a far bigger budget to be able to fund it. right and pouring a bucket of ice on my head, while maybe making me feel good and certainly virtually signaling to my friends about the idea that I poured a bucket of ice on my head because I don't like this disease, which is a crazy thing, because who likes ALS anyway? right, that would be a much better way to actually solve the problem. but, like it became this viral thing that everybody celebrated and you have to sort of step back for a second and be like this, is super weird y'all.

like you know, there are ways to actually invest in this research, and this ain't it. and on the other side of it, like there's a whole bunch of other diseases that you know, nobody's going to pour a bucket of ice on their head because it doesn't have the same PR system around it. right? I mean you think about like the amount of time and energy spent on different kinds of cancers. right, you know, breast cancer is a terrible disease, but as is colorectal cancer.

in fact, colorectal cancer is the single leading cause of new cancers and cancer death now. but like they don't have the same PR system, right, the whole world doesn't turn like doodoo brown on some month for colorectal cancer. right, like that'd be a terrible PR system, I agree. but like there's no PR for colorectal cancer, right, even though there's. there's a whole PR system around pink in October for breast cancer.

so like it's a weird thing that we live in a society where a disease has to have a PR system built behind it to actually get our attention. you know, in the crazy thing, the indictment to gofundme of all this.

now I will say, a lot of folks in silicon valley consider it one of the most promising sort of unicorn companies and kind of this, just like cash making machine, because they get money on every donation that's contributed on the site and they have a tremendous amount of traffic, not just from the U.

S. but from a number of countries around the world.

I probably take everything that all CEOs say with a bit of a grain of salt, because they are beholden to, most of them are beholden to shareholders more than they are beholden to the public.

But I think it's an interesting.

large proportion of campaigns raise zero dollars or that people are trying to use the platform to get money for their kids to eat during the pandemic. I mean, I could see how it would be better for their platform to have a bunch of really successful viral campaigns for cute little white kids with cancer, which is kind of where they started out.

And I think they very much cash in on a sort of feel-good charity politics.

You know, like their customer service agents for a while were called like happiness agents. You know, so I think they also are kind of branding into this a bit. And the platform itself has said, we wanna be the clearing house for all charitable donations, period. Not just donations to GoFundMe, but every time someone's like, hey, I wanna do some good in the world. I think I should give to X charity.

GoFundMe wants it to go through their site. So they have big ambitions. And certainly every time someone starts a campaign and passes it along to their friends, they get great brand recognition.

And so it really is such an uphill struggle for most people in what has only.

One, is there a way, just internal to the system, that we can make this more humane and maybe just address some of the inequities of it? And then I want to talk to you about, you know, your thoughts on the broader system, because a lot of this is imposed upon people, because of the failures of a much bigger structural system. But even internal to the system, is there a way to address some of the failures that we talked about here?

It's not like. that's the widget.

And yet I have also, like, it's really important for me to say, I do think that crowdfunding taps into a lot of very good human desires to build community, to support one another when we're in need, to reach out, to be connected. And those are very genuine intentions that I think we should foster. I'm just not sure that they have to be fostered only through crowdfunding. And so I've talked to, for example, mutual aid network organizers who have used crowdfunding in really powerful ways to raise cash for community initiatives and stuff. And so much like other tech tools, I think it's a tool.

It matters how we use it. And it's not necessarily a solution in and of itself.

But there are certainly people out there, right? And all of us know them who are really happy to give to a crowdfunding initiative, who would fundamentally vote to sustain the entire system that created the need for that crowdfunding, right? And this is sort of the logic of trying to replace the kinds of things that government can provide you with charity, right? And it's the same logic you see across the board. and it fundamentally fails.

And that's the thing, is that there has to be an alignment across those.

That looks really good on the surface, but, like oftentimes, part of the reason they're doing that is because they don't actually wanna pay into more formal healthcare networks where they also have to, they're, what they pay into those networks is also implicitly helping people that they may not wanna help, right? They wanna help people who share their beliefs and who look like them. And I think that's a really problematic idea. that's really baked into a lot of the aspects of our healthcare system, as well as the opposition that we see to things like Medicare for All.

I also, though, as much as we've been really focused on the core health insurance problem. at the heart of this, I think there's also a broader social safety net problem that really gets revealed by crowdfunding. A lot of times, when you're looking at complex crowdfunding campaigns, like the one for Jim, what we see there is not just a failure of a health insurance system, but also a failure of an affordable housing system, right? Of childcare, of the money that someone might need to pay the exorbitant parking rates at a hospital that they have to drive three hours to get to. And so I think we're gonna continue to see a reliance on crowdfunding until we can make all of those systems more robust and more inclusive for people.

And so I think that's one of the messages that I really wanna get across, is that medical crowdfunding is not just about the bills that are coming from the hospital, but about all the different ways that we end up really paying for being sick and not being able to afford it in this country.

And so a lot of folks get forced into choosing between which debt am I going to take on and which one do? I think I have to pay now to keep things going. And part of the challenge here is, well, when we build a society where a lot of people, excuse me, very few people have a lot of things, right? And a lot of people have very little, what we're doing is we're saying we are okay with that society. And then we're building these tech solutions where a couple of them may hit, right?

The generosity lottery of crowdfunding and be able to buy themselves momentarily out of the challenge. Here's the other thing about it, though, right? I mean, a lot of these folks make crowdfund once, but it's not the kind of well you can go back to, right? So you got one shot at it, right? Chances are it doesn't work.

And even if it does, even if it does, right? It's not like you've solved the structural problems that created the situation in the first place, right? And most people's problems are not of the type that, like everything, hit at once. It's that this is a chronic challenge to be able to make all these ends meet. And this is the society we've all sent it to.

So a couple of folks who give us solutions like this can make a whole lot of money off of them without being taxed their fair share.

And what happens is all those folks like Jim, you know, go on and lose their home and live out of their car. And all of us say, well, that's too bad. That's really sad, right? It was really sad and we could do something about it if we chose to.

Thank you for coming on to chat with us about it. And we wish you well and look forward to your next one, okay?

And we really ought to be studying that more closely. But that's an academic point, because why the F? would you mess around with the risk? Because if COVID taught us anything, it's that there's this distinct group of, we'll call them public health iconoclasts out there, who will deliberately do the thing that public health officials say they shouldn't. Maybe it's a living on the edge thing.

Maybe it's a F. you, you can't tell me what to do thing. But either way, when we're talking about a potentially serious avian flu that could jump into humanity, it's a dangerous thing, not just for them, but for all of us. When people ask why public health needs enforcement powers, why can't we just give people good information and expect them to follow it? Here's your answer.

And yet public health officials just aren't inspiring much confidence right now. Beginning in 2021, WHO member states agreed to begin a process to draw out a pandemic response treaty to ensure a more equitable and consistent response to a future pandemic. The idea here is that this treaty would bind member nations to look out for poorer and more underserved countries by sharing resources. But negotiators just met for a ninth and final time and couldn't get to an agreement. Yet another example of how, following the worst pandemic in living memory, we seem to have failed to memorialize the lessons in ways that can assure a better response next time.

Sadly, but also unsurprisingly, issues arose over the powers afforded to the WHO. Republican senators in the United States wrote a letter to President Biden urging him not to sign the current draft out of fear that it would be, quote, shredding intellectual property rights. The UK's conservative government also expressed concerns over, quote, national sovereignty. Notice which countries I'm mentioning here, rich, powerful countries who were able to stockpile the resources their citizens needed to the exclusion of the poorest and most marginalized worldwide. But here's the brutal irony.

The very folks expressing concerns about the international treaty were the ones demagoguing the very things their national governments were hoarding, PPE and vaccines. It's a reminder that basic sense has succumbed to strict ideological fealty, and the global haves will do what they can to protect that. Even if it means stripping poorer countries of the most basic resources needed in a pandemic. Finally, a new abstract published last week found that rates of permanent birth control, including vasectomy and tubal ligation, increased following the Dobbs decision, which removed constitutional protection for abortion. Get this, vasectomies increased by 59% among men under 30 and tubal ligations increased by 29% for women under 30..

Yeah, you heard that right. People under 30 choosing permanent surgery. Increases were higher in states where governments were hostile to abortion or where there were already laws on the books against it. This is yet another reminder that the quote pro-life position tends against more life. Think about it.

Because of the Dobbs decision, thousands of people are electing to permanently protect themselves from creating a pregnancy for fear of having one. their state bars them from terminating. That's it for today. Thank you so much to Professor Nora Kenworthy for joining us. And if you have guest recommendations for the show, share them with us at info at incisionmedia.com.

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