This piece appears in my book Welcome to Hell World: Dispatches from the American Dystopia available now. It originally appeared in Esquire two years ago and nothing much has gotten better and in fact it seems things have gotten somehow worse pretty cool shit.
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In late February 2017 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 at the time 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 which is people 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 what will happen if coverage for a preexisting life-threatening condition is eroded.
McFarland who was a twenty five 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 she has trouble walking or standing without severe pain and sometimes blacks out but she 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.”
“Without the coverage for preexisting 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 as the crowd erupted in boos. “Do your job!” they chanted. Momentarily abashed he made a half-hearted stab at addressing the question assuring her that he wanted 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.”
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 MacFarland had set up a fundraising page on YouCaring. It’s 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 2017 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 refreshing the page continually.
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 which eventually combined to bring in more than a million dollars to cover medical expenses and recovery costs and memorial services for the victims. That was thanks in no small part to the sensational horrific story becoming international news.
After trying their hardest Republicans weren’t quite able to dismantle the AFA which is some small solace but not exactly a cause for celebration if only because a broken system wasn’t made worse. 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.
For a steadily increasing number of Americans including millions who now regularly use sites like YouCaring and GoFundMe health care has in fact become about competition. No not the kind Republicans usually talk about but a competition for individuals in the marketplace of virality.
“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 told me. “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 are to tell a good story and spin a narrative and appeal to people’s interests which becomes almost absurdly macabre when the subject is human lives. McFarland is a unique case in that she proved an especially effective advocate for herself: She’s young and photogenic and 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 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 hundreds of millions. 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 said. Today around 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 who were victims of the Boston Marathon bombings who lost limbs. A fundraiser for the couple who were portrayed in the 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 according to 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 said.
“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 said. “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 and leukemia and and lymphoma as well as ALS and Parkinson’s disease and birth defects and traumatic injuries such as car accidents.
The industry leader by far is GoFundMe. Over the past five years the platform has raised more than five billion for various causes according to CEO Rob Solomon. It’s an amount that’s increased exponentially year by year with medical remaining in the top three categories.
“Medical is a very interesting category, it’s really what helped define and put GoFundMe on the map,” Solomon said. “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,” Boland said.
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 as 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,” Anupam B. Jena, a professor at Harvard Medical School and a practicing physician at Massachusetts General Hospital in Boston told me. “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 said but it’s the interaction with the community that can often be the real emotional or spiritual uplifting salve.
Dennis Disbot remembers his last beer. It was in August of 2016 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 said. “OK, now it’s time to get down to business.”
When we spoke a couple years ago Disbot had just wrapped up seventeen days of treatment at UCSF medical center where he was undergoing another round of chemotherapy and cell transplants. His aggressive cancer had recurred twice within a two-year period after Disbot had been first been diagnosed in February of 2015 which was the same week his son was born.
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 and rent and lost wages began to add up quickly. They tried raising funds on a smaller level by soliciting friends on Facebook and 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 told me was 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, nine out of ten 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 said.
“The secret prize for people who raise money on the site is they find out how much people care about them,’ YouCaring’s Boland said. “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 which is a rare terminal and rapidly degenerative disease sometimes referred to as Childhood Alzheimer’s. The family crowd-funded 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.
Both O’Neill and his wife Cara who is 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 said.
“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 which was 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 in another $40,000 but “it wasn’t going viral,” O’Neill said.
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 and spent a week shooting forty hours of footage then emerged a few days later with a professional video that sits atop the fundraising page today. Within fifteen 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 said. “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.”
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 did 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 said. “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 said.
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 said. “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,” GoFundMe’s Solomon said. “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 and 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,” Andrew Dix the CEO of trade site Crowdfund Insider told me. “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.”
Specificity is important he said 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 Amy O’Leary the editorial director of Upworthy a site that often featured crowdfunding campaigns said. “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 piece- meal 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 said. But he added that even in countries with socialized medicine people still need extra money for health care. “If you’re in the U.K., 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 at the time who covered the phenomenon of viral stories said 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 said.
In the absence of another viable alternative Hongo was often 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 who was an editor at Uproxx said 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 which is something he sees a lot of as a food and travel editor he’d ask if there is 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 said. “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 few 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 said. “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 said that 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 said. “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 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 said. “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 said. “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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