In late February, Senator Tom Cotton stood before his constituents at a town hall meeting at Springdale High School in northwest Arkansas and attempted to explain why the free market won't necessarily kill them. The capacity crowd bristled with energy and frustration, in the type of scene that became common throughout the country last month, when angry voters demanded answers from their representatives about what a long-promised plan to repeal and replace the Affordable Care Act would actually look like. Many Republicans, like Utah's Jason Chaffetz, the House Oversight Committee chairman, dismissed the crowds as disingenuous paid protesters. In truth, they represented what has become an all-too-typical strain of worry: People legitimately frightened about what will happen to them if they get sick, or—as in the case of Kati McFarland, a constituent of Cotton's at the meeting—if coverage for a pre-existing, life-threatening condition is eroded.

McFarland, a 25-year-old photographer and student at the University of Arkansas, waited for her turn at the microphone to confront Cotton. Suffering from a genetic disorder called Ehlers-Danlos Syndrome, McFarland, who has trouble even walking or standing without severe pain and sometimes blackouts, summoned her strength to ask the senator point blank: Did he intend to leave her behind? She was nervous because of the size of the crowd, she told me a few weeks later, but also because Cotton "is a Republican, Tea Party senator, and I am like this liberal Episcopalian, borderline socialist person."

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"Without the coverage for pre-existing conditions, I will die," she told him. "That is not hyperbole. Without the protections against lifetime coverage caps, I will die. So my question is, will you commit today to replacement protections for those Arkansans, like me, who will die or lose their quality of life, or otherwise be unable to be participating citizens trying to get their part of the American dream? Will you commit to replacements in the same way you've committed to repeal?"

Cotton thanked McFarland for her question, then moved on, the crowd erupting in boos. "Do your job!" they chanted. Momentarily abashed, he made a half-hearted stab at addressing the question, assuring her, in what has become the mantra for Republicans dead set on dismantling a program that, while imperfect, increased the number of insured Americans by around 20 million (or is it 30?), that he wants to make sure all Americans have access—access— to affordable care.

McFarland's stance garnered immediate and widespread attention, with coverage across cable news. On MSNBC the next day, she explained her thinking. "If they're going to do this, if it's going to possibly kill me in the next couple years without health care, I have to get my story out and my face out when I can. Maybe if I put a human face and voice on it, give them something they can really recognize, like their daughter, or their niece, then maybe it would change their heart. Or at least change other Americans' hearts."

McFarland, like many Americans who suffer from rare and expensive diseases—or those who simply cannot afford the associated and unexpected costs that accrue from the most mundane ones—has been trying to use her face and name to fund her care for years now. She had set up a fundraising page on YouCaring, one of many crowdfunding services focused entirely on helping Americans defray the costs of their health care by appealing to the kindness of strangers. In a post from November she said she was excited to receive $265. It was a small amount, but enough to cover a motel for her next trip to Dallas to see a specialist unavailable in her state. A few days before the town hall, she posted a more alarming message.

"Hi y'all - unfortunately a dire update. Here's the situation: if this fundraiser doesn't do better I could soon be homeless, lose electricity/internet/heating to my house, or lose my health insurance…. My benefits won't cover all bills and premiums, and I've had to spend so much savings on medical bills that I have none left from my dad's estate…"

The TV hits were a boon for McFarland. Shortly after the town hall, her fundraiser had grown from $1,500 to $24,000. She watched in shock as it continued to grow, she says, refreshing the page continually. As of this writing it stands at $49,460—not quite her $63,140 goal, but drastically closer.

Around the same time as Cotton's town hall, three men were shot in a Kansas bar in an apparent hate crime, leading to the death of Indian-American engineer Srinivas Kuchibhotla, and the injuries of his friend Alok Madasani and bystander Ian Grillot. Four separate fundraisers were launched in the immediate aftermath of the attack, and have since combined to bring in more than $1.3 million dollars to cover medical expenses, recovery costs, and memorial services for the victims—thanks in no small part to the sensational, horrific story becoming international news.

With the House declining to hold a vote on the American Health Care Act, prospects for the millions who would have lost coverage aren't quite as bleak as they seemed just a few days ago. But the bill's lack of support came, at least in part, because it was somehow not cruel enough for the GOP's far-right wing. Last week's news isn't cause for celebration because a perfect system has remained in place, then, but rather because a broken one wasn't made worse. And regardless of what transpires with health care down the line, at a time when more than half of the country has less than $1,000 in savings in case of an emergency, it seems guaranteed that more and more people will turn to the aid of their Facebook network for health care.

Last week's news isn't cause for celebration because a perfect system has remained in place, but rather because a broken one wasn't made worse.

For a steadily increasing number of Americans, including millions who now regularly use sites like YouCaring and GoFundMe, raising billions of dollars in charitable giving, health care has in fact become about competition, but not the kind Republicans usually talk about. Instead, even under the Affordable Care Act, it's become a competition for individuals, like so much else in our modern lives, in the marketplace of virality.

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"I won't lie, a lot of [the money I raised] is because I shoehorned the link to my fundraiser into my appearances on TV," McFarland says. " I feel bad about that, but when you're in dire straits like I am, with no savings left, no family, I was going to lose my home, you do what you have to do."

The advice for best practices most of these sites share—tell a good story, spin a narrative, appeal to people's interests—become almost absurdly macabre when the subject is human lives. McFarland is a unique case in that she's proven an especially effective advocate for herself: She's young, photogenic, internet-savvy, and has a heartbreaking story, having lost both her parents at a young age. Many others are much less fortunate.

On top of managing your health and your expenses, now you have to make sure you present your malady with authenticity. Think of your cancer as the origin story a tech startup tells about itself on the About section of its website. And then start hoping a celebrity takes an interest in your plight online. It might be a shorter wait for that than a doctor anyway.


While smaller forms of crowdfunding as we now know it stretch back to at least to the turn of the millennium—initiated most notably by artists and musicians hoping to raise cash for creative projects—it wasn't until rewards-based crowdfunding sites, like Indiegogo in 2008 and Kickstarter in 2009, began in earnest that the concept became a regular part of life online.

Around that time, the idea of raising funds for those experiencing life-changing events—often medical—began to take root. GiveForward, which specializes in medical causes, was among the first major crowdfunding sites in 2008, and has since raised almost $200 million. GoFundMe followed in 2010, then YouCaring in 2011. Indiegogo has since launched a medical and personal-issues spinoff called Generosity.

From its inception, GiveForward realized there was a space for this type of charitable giving, CEO Josh Chapman says. Today, 70 percent of the company's fundraisers fall under the medical category. Its first successful fundraiser, in 2009, focused on two sisters, one of which required a kidney transplant. Since one of them had had another organ transplant earlier in life, her life-insurance policy had been maxed out. The younger sister was a match, but there was no way they could pay for the procedure out of pocket. They turned to GiveForward, and raised $30,000 to make it possible.

The platform has managed a number of high-profile efforts in the years since, including one for Jessica Kensky and Patrick Downes, two victims of the Boston Marathon bombings who lost limbs. A fundraiser for the couple, who were portrayed in the recent Patriots Day film, pulled in almost $900,000. Another successful fundraiser collected money for Billy Ray Harris, a homeless Kansas City man who returned a diamond engagement ring to a woman who'd accidentally lost it when putting money in his cup. Onlookers who saw the story in the media came together to donate almost $200,000 to Harris.

YouCaring has also seen steady growth in the medical category, including a larger uptick than usual in the past year or so, says Jesse Boland, the company's director of online marketing. YouCaring now raises around $200 million a year; 40 percent of that is for medical-based needs, he says.

"Medical fundraisers typically do better than a fundraiser for a pet or a mission trip because the need is very clear, and it's a dire situation," Boland says. "They're typically more viral and the ask is very clear, so people typically give more." Among the most common fundraisers on YouCaring are for people suffering from cancer, including pediatric cancer, leukemia, and lymphoma, as well as ALS, Parkinson's disease, birth defects, and traumatic injuries such as car accidents.

But the industry leader by far, is GoFundMe. Over the past five years, the platform has raised more than $3 billion for various causes, according to CEO Rob Solomon, an amount that's increased exponentially year by year, with medical in the top 3 categories.

"Medical is a very interesting category, it's really what helped define and put GoFundMe on the map," Solomon says. "A lot of people perceive it as a place for just medical bills, but in reality there's a lot of nuance. Traveling to get treatment when family come to town is a big part. We see a lot of fundraising for foundations and charities. People are living a lot longer, so we're seeing elderly people try to raise money for their care."

But while everyone I spoke to in the crowdfunding industry is proud to be able to provide aid to users, it's also not an easy job. "It will break your heart to see some of the things people are going through," says Boland.

It's that heartbreak that's one of the major factors in the seeming ubiquity of medical-based crowdfunding in our social media feeds. The large number of fundraisers, observers of the industry say, has become a self-fulfilling growth engine. The more people see others doing it, the easier it is to realize they can ask for help themselves.

"There is a little bit of an avalanche effect: One person does it, it works, another does, it works better, and a platform develops around it," says Anupam B. Jena, a professor at Harvard Medical School and a practicing physician at Massachusetts General Hospital in Boston. "The first time it was probably a strange thing, now it wouldn't be uncommon to hear about a young family with a child with cancer who is trying to crowdsource funds for treatment." The money for the people in need, is important, Jena says, but it's the interaction with the community that can often be the real emotional or spiritual uplifting salve.

"There is a little bit of an avalanche effect: One person does it, it works, another does, it works better, and a platform develops around it."

Dennis Disbot remembers his last beer. It was in August of last year, a year and a half after he'd been diagnosed with testicular cancer. Then he found out it had recurred in his liver. He called a friend, and they went to the Barrelhead, a local brewery in San Francisco, where he lives with his wife and young son, and decided he needed one last hurrah. "It was a very symbolic gesture," he says. "OK, now it's time to get down to business."

When we spoke, Disbot had just wrapped up 17 days of treatment at UCSF medical center, undergoing another round of chemotherapy and cell transplants, a regimen that began back in November. His aggressive cancer had recurred twice within a two year period. Disbot had been first been diagnosed in February of 2015, the same week his son was born.

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While Disbot and his wife both had health insurance at the time of his diagnosis, they began accruing large expenses almost immediately, draining their savings accounts. Child care, rent, and lost wages began to add up quickly. They tried raising funds on a smaller level, soliciting friends on Facebook, hosting events, and so on, but in November, they realized they needed a boost and started a YouCaring page. He's since raised $46,000 of his $75,000 goal.

The biggest hurdle, Disbot says, is the inherent reluctance many people have to reach out. "It's challenging to stand up and keep your head high and say, 'Hey, we need help. I am maxed out.' It's amazing, because people in our community, 9 out of 10 times they'll say, 'Let me know how I can help.' Being as specific as possible allows one to align their needs and feel heard and seen." Seeing people from so many networks and times of his life, from kindergarten to college, coming together has been exceptionally moving, he says.

"The secret prize for people who raise money on the site is they find out how much people care about them," says YouCaring's Boland. "The money is the primary ask but they end up being better off for having connected to their community, so they get a sense of peace and belonging."

For Glenn O'Neill, who lives in Columbia, South Carolina, that community has proven larger than he ever could have imagined. His daughter Eliza was diagnosed at three years old with Sanfilippo Syndrome—a rare, terminal, and rapidly degenerative disease sometimes referred to as Childhood Alzheimer's. The family has crowdfunded almost $2.1 million to establish a non-profit 501c3 called Cure Sanfilippo Foundation, which has been busy funding clinical studies. The work has already given the O'Neill family hope that their daughter and others like her may find some relief. But they couldn't get there without solid production value.

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Both O'Neill and his wife Cara, a pediatrician for special-needs children, had quality health care, but even the best of plans don't prepare you for rare diseases with no known cure or treatment. "Since it's a rare disorder, people don't just give millions to these types of things," he says. "Government grants are difficult to get, the lead time is years. We knew we had to act fast."

After six months, they had raised $200,000 on their own, still a relative drop in the bucket, so they turned to GoFundMe. They posted a video of Eliza at the end of 2013, which brought another $40,000, but "it wasn't going viral," O'Neill says.

So he began researching how to make things stand out online. Eventually, he came across a photographer named Benjamin Von Wong, who said he wanted to help. He came to the O'Neills' home with a crew, spent a week shooting 40 hours of footage, and emerged a few days later with a professional video that sits atop the fundraising page today. Within 15 days the family had raised $500,000. By the end of 2014 they had $2 million, which they spent funding pre-clinical work for clinical trials.

"GoFundMe was everything to us," he says. "That link [to our fundraiser] was in every media story about our effort. Every parent deserves the same chance we got and that other kids will get."

Now, their foundation has amassed $4 million. And Eliza, now six, has shown some promising signs. O'Neill doesn't understand why 35,000 people around the world felt touched enough by Eliza's story to donate, but he remains heartened by everyone who does, like the people who comment saying they are out of work but wanted to give $10 to the cause.

"I knew people were good, the majority of people, but I never knew how good until what's come into our lives," he says. "They were strangers to us before the diagnosis, but come into our lives and say they just want to help. I'm always taken aback by that. I have a stake in this, my daughter has it, but why would you be doing this?"

The O'Neills, like others who've had success with crowdfunding, realized that successful crowdfunding is about storytelling. Having a sick child in and of itself isn't enough to galvanize people — we collectively ignore the plight of millions of sick children every day. But it's when the specific story of one individual can be harnessed that we feel moved to take action. One sickness is a tragedy. A million is merely a statistic.

"It's about allowing donors to be part of something bigger and I think that's what these campaigns do," O'Neill says.


I often joke lately that I used to think I've wasted my life on Twitter, but it might actually come in handy when I inevitably need to crowdfund an operation. You have to hustle. You have to market. You have to build your brand.

"There's a lot of people who believe you just post a fundraiser and donations are going to immediately come in, and that's not the way it works," Chapman says. "We have thousands of pages posted every week on our site. The big thing is spreading the word. Once you get that momentum going the key becomes providing updates, what the money is going towards."

"A picture is worth 1,000 words, a video is worth maybe a million," says GoFundMe's Solomon. "It's really a storytelling platform, the more interesting and compelling the story the better these will do."

In essence, crowdfunding is all about becoming your own agent, publicist, and advocacy group all rolled into one, whether you're raising money for a social media robot dog or trying to stave off your impending demise.

"You capture the heart and the mind will follow," says Andrew Dix, CEO of trade site Crowdfund Insider. "I think presenting a good narrative that shows a pressing need, and a challenging situation can compel people to contribute to somebody they really don't know, they don't have a relationship with."

Crowdfunding is all about becoming your own agent, publicist, and advocacy group all rolled into one.

Specificity is important, he says. As is appearing credible. "The last time I contributed to one, I noticed the person had gone to the same university I went to. I read the story, did a little fact-checking, and I said I want to help this person because they're trying to do what's right."

"I think a lot of people have story fatigue, says Amy O'Leary, editorial director of Upworthy, which often features crowdfunding campaigns. "At this point in human history, we see more stories every day than any generation ever before, so I think it's a real challenge. There's compassion fatigue, especially when seeing the same kind of stories over and over again. Sort of the same principles for really great story telling apply to how you get people to care about an issue: vivid details, and a character that's relatable that you can come to care about through story."

While it's undeniable that crowdfunding has saved many lives, it's hard not to wonder how we got here, and whether this new piecemeal health care workaround brings other types of ingrained biases. Two recent studies have found that race plays a role in the success of crowdfunding projects, although those focused on the more entrepreneurial and equity side of services like Kickstarter.

"I think it's unfortunate we have a healthcare system where people need to do this," Harvard's Jena says. But, he adds, even in countries with socialized medicine, people still need extra money for health care. "If you're in the UK, which has a national health service, there may not be access to certain treatments that are too expensive to be provided by the federal government, so people may crowdsource funds to come to the U.S."

Among reporters who have covered campaigns like these for years, the entire operation can seem especially perverse. Hudson Hongo, an editor at Gizmodo who's covered the phenomenon of viral stories, says the decision about whether to feature a crowdfunding story often hinges on the individual's social capital. "Local indie legend needs transplant, or whatever," he says.

In the absence of another viable alternative, Hongo is sucked into the piecemeal health care lottery game as much as the rest of us, governed by our own whims and biases. "Last week I gave to an acquaintance from back home for a medical recovery crowdfunding thing because I like him. But it's not like assholes deserve to not be ruined by medical problems."

Stephen Bramucci, an editor at Uproxx, says he hopes he applies a different standard to life or death stories. If he were considering covering a story about someone crowdfunding to travel the world, something he sees a lot of as a food and travel editor, he'd ask: Is there a good hook? Do they have a strong sense of their brand? Are there good photos? Will they give a good soundbite?

"With travel the concern is always the same: They get funded super-quick when it's a really hot couple we can relate to in some degree and we want to see them posting pictures on Instagram of each other's butts. If you're holding people's health to that standard it's really fucking scary."

"What if it's some [old sick] guy who doesn't have a daughter who's a good writer?" Bramucci says. "I'm an editor and I get pulled in because it's someone who can tell a story. That means this guy doesn't get funded? It's a fucking minefield."

And what happens to the people too shy, or attention averse, to share the intimate photos of their physical suffering? Upworthy's O'Leary was reminded of a hugely popular story her site covered a couple years ago about a young man who'd had lap-band surgery, but now lived with excessive loose skin. "What was remarkable about it was he took pictures of himself and showed everybody what it was," she says. "Once he saw his story was picking up viral steam, there was a crowdfund that started. He was so open and vulnerable by sharing those photos I think people were moved."

Abby Ohlheiser, who covers digital culture for the Washington Post, says she tends to write about campaigns that have already gone viral, or have a large potential audience looking for them because they're already part of a larger news story. "I do see these campaigns shared into my own various social media feeds at a sobering pace," she says. "And when I see a celebrity retweet or share one of these campaigns, it makes me wonder how many equally deserving requests for a signal boost like that were missed."

Chapman and the other sites' representatives agree that, yes, ideally they wouldn't have to exist, but even with a healthcare system that covered everything, there are still many related costs that crop up.

Chapman and the other sites' representatives agree that ideally they wouldn't have to exist, but say that even with a health-care system that covered everything, people will never stop needing funding in times of poor health. Nonetheless, it's tempting to see the pawning off of caring for citizens onto others' charitable impulses as keeping with Republicans' gutting services for the poor and needy while justifying it by saying they also give at church.

"Given the current political environment, we've definitely seen a lot of apprehension and fear of what is going to happen in the coming months and years," Boland says. "There are a lot of treatments that aren't covered by insurance, a lot of experimental treatments that people want to try so only crowdfunding can help them. But we are definitely seeing people who are a little apprehensive."

Both times she appeared on television, Kati McFarland explained her thoughts on the Affordable Care Act. It isn't perfect, she said, but it saved her life by keeping her coverage despite her condition. But she's uncertain about what's going to happen down the line: even with the ACA's provisions remaining in place, her costs of coverage are almost insurmountable.

"It's so sad I have to come on these things and spend time talking about the issue saying 'go to my fundraiser' because that's what we have to do in this country, and that's abhorrent to me," she says. "I know people think socialized medicine, that's a nasty word, but if that was the case we wouldn't have to do this. If they spent a fraction of what they spend on the military on the ACA—not even socialized medicine—then the premiums wouldn't be high, it wouldn't be the mess it is now."

She read a funny joke on Tumblr the other day. "It was something like, 'What if we put in a GoFundMe for everyone's health care all at once, and everybody in the country paid for it, and the money it raised went to help everyone?'"

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Luke O'Neil

Luke is a writer from Boston who writes the newsletter Welcome to Hell World and author of a book of the same name.