The Perverse Logic of GoFundMe Health Care

, and Supplemental Security Income, the federal program that provides extra support in cash. Determining eligibility was projected to be an eighteen-month process.

“Thanks for coming. I prepared a little something to keep me on message.”

“I learned that there are lawyers and other people whose job it is to understand and translate to families and push paperwork through the system,” Gabi said. “But those people cost money.”

“Again, we are not poor people,” Zohar added. “We are not out of work. I started working three days after I came to America. Ask in our community!”

“That’s what the system is supposed to be for,” Gabi said. “For people like us, who are hit with unforeseen circumstances and who can’t manage alone.”

On GoFundMe, the Ilinetskys worked their own system. For years, they had been active members of the local Jewish community, and now they tried to use that network to bolster their campaign. Their synagogue, Chabad of Contra Costa County, agreed to collect the GoFundMe contributions, making them, in theory, tax deductible for donors. A marketing-video firm to which Zohar had tossed work returned the favor by making Web documentaries about the family. Friends and relatives in Israel amplified their campaign on social media. “You know how you know somebody who knows somebody who knows somebody?” Zohar said. “That’s how it went.”

And yet, to hear the Ilinetskys tell it, their campaign so far has been a bust. “If you’re not supported by a page that has millions of followers, it’s not going to happen,” Zohar said.

“Or if you’re not supported by a P.R. company,” Gabi added. A few firms had approached them—“They wanted to sell us”—but the Ilinetskys were uncomfortable with the idea of forking over a cut of what donors would assume was going to the kids.

“We don’t really have any more ways to fund-raise,” Zohar said, morosely. Without the full two million, he thought, there would be no gene therapy before the twins’ brains were too far gone.

Traditionally, clinical trials are funded through large grants from the medical establishment: the National Institutes of Health, the V.A., perhaps drug companies—and, in fact, commercial studies for Canavan treatments are under way in other quarters. When I asked Leone about the advantages of aligning with crowdfunders, she explained that it allowed researchers to fast-track their work. “Time is of the essence,” she said. “Grants require preliminary data, and preliminary data require funding.” This approach risks carving out an alternative treatment channel, bypassing some of the usual vetting by the medical community in favor of sanction by donors who may lack expertise. Leone is in contact with another GoFundMe campaign for two young Canavan siblings, Benny and Josh, in Brooklyn. That campaign, which started about a year before the Ilinetskys’, tells a similar story but has so far raised more than $1.3 million; Leone touts it as a success, unlike the Ilinetskys’. It is puzzling that campaigns for almost identical causes should behave so differently.

“You feel helpless,” Zohar said of his own campaign’s performance. Yoel was tucked tenderly in the crook of his arm. “What do you want me to do? How can I prove to you that my kids are sick?” His voice rose into panic; the wishing well had run dry. “It’s just another story,” he said, after a while. “That’s what the social-network world is doing—it makes everything just another story.”

Storytelling has never not been in fashion—it’s our primal imaginative act—but in recent years the word has travelled widely with the buzz of civil enterprise and wealth. Melinda Gates: “The power of stories . . . opens our hearts to a new place, which opens our minds, which often leads to action.” Michelle Obama: “Barack and I have always believed in the power of storytelling to inspire us, to make us think differently about the world around us, and to help us open our minds and hearts to others.” Tim Cook: “Great stories can change the world.” Memo received.

In crowdfunding, this kind of storytelling has become crucial to success. “The story is obviously the paramount piece of any campaign, whether you’re raising capital for a big tech idea or raising capital for a problem you have,” Roy Morejon, the president and co-founder of Enventys Partners, a prominent crowdfunding consulting firm, told me. A good story attracts attention, from which more attention often grows. “We’ve now launched more than a thousand crowdfunding campaigns, and what we’ve seen at work is fomo—the fear of missing out—and a sense of urgency,” he said. “Nobody wants to be the first person on the dance floor, but, once there’s a party on the dance floor, people join in.” In most successful campaigns, the first third of funding comes from one’s real-life community. “Once that happens, you usually have about an eighty-per-cent success rate to fully fund the ask,” Morejon said. At GoFundMe, a “happiness team”—a corps of customer-service representatives—occasionally contacts users with pointers for improving the way they tell their stories.

Yet putting so much weight on storytelling also underscores its limits. Stories dictate their own span: beginning, middle, resolution. This is not how major change happens, and the strength of social storytelling—its ability to make problems seem individual and ordered—can also become a weakness. Storytelling looks past all the interlocking motions of society in favor of the personal, the private, the atomized view. (In “Mary Poppins,” when young Michael incites a run on the bank and then goes off flying kites, we don’t see the effects of this financial collapse beyond Cherry Tree Lane.) We risk building a theatre in which individuals are led onstage, told to perform their moving stories, showered individually with cash and allyship, and then summarily dispatched.

In general, the people who benefit most reliably from our storytelling moment—the people in power and in control—aren’t the speakers but the stage managers. Many right-minded journalists, if pressed, would admit to feeling an undertow of awkwardness about trying to stir an audience of peers by trawling for stories that expose the suffering of people whom they’d never write about in good fortune. Success, in this respect, begets success. Morejon told me that he got into crowdfunding, almost a decade ago, because he was an expert in online advertising and, through search-engine optimization, could get campaigns to appear near the top of Google, where strangers would find them and give. Now eighty-five per cent of his advertising budget goes to Facebook and Instagram, because those platforms show the best returns. This is another way of saying that advantages in crowdfunding still go to the people who arrive with the most powerful connections and the best networks. After that, there is competition, with perverse incentives: whoever has the most heartrending story wins.

In September of 2016, a particularly moving campaign appeared on GoFundMe. “As many of you know, our dear friend Jenny Flynn Cataldo has been battling cancer for over 3 years now,” the campaign’s description, posted by a family friend named Will Pearson, began.

The cancer is unfortunately no longer treatable and the primary goal of medical care at this point is to give Jenny as much time as possible with her precious 6-yr-old son Flynn and her husband Daniel. For those of you who have not had the pleasure of meeting Flynn, you’ll be pleased to know that he inherited his mother’s contagious laugh and larger-than-life personality. . . . With medical bills piling up, we thought we’d set up a fund so that all of us can help Jenny continue to get the treatments necessary to extend her life.

The text accompanied a photo of Cataldo, a rosy-cheeked woman with a neat brown bob, cuddling with her amiable-looking bald husband. A roly-poly child with a toothy grin was perched behind them.

As the campaign continued, Cataldo posted notes about her progress and about her mounting needs. Her father, too, now had cancer; meanwhile, she was losing kidney function. In March of 2017, she presented a grim prognosis: “I told Flynn tonight and he says he will never forget me and will always hold the bear we made because I am his only mom!”

On May 4th of that year, Cataldo was arrested and charged with two counts of first-degree theft by deception. She did not have cancer. Through two GoFundMe campaigns, she had fraudulently raised thirty-eight thousand dollars; altogether, she had taken in nearly half a million dollars, most of it through a seven-year false narrative perpetrated on her family and friends. A new portrait of Cataldo that circulated, courtesy of the local sheriff’s office, showed her with a buzz cut, wearing jailhouse orange. She looked quite different—dazed and full of rage.

“People erroneously assume that GoFundMe is doing fact checking,” Adrienne Gonzalez, who monitors the platform on her Web site, GoFraudMe, said. Gonzalez writes for the accounting-industry news site Going Concern (“the Gawker of accounting,” as she put it to me) and started GoFraudMe in 2015, after noticing a GoFundMe campaign soliciting funds for Bart the Zombie Cat, who purportedly got hit by a car, dug himself out of his grave, and rang up a sizable unpaid medical bill at the Humane Society of Tampa Bay. The campaign, created by one of Gonzalez’s neighbors, raised more than six thousand dollars. Yet it rang false. “I’m in cat rescue,” Gonzalez explained. She knew that humane societies usually pay their own care expenses, and some Googling confirmed that Bart’s bill had been covered. “I tried to report it directly to GoFundMe,” she told me. “They basically told me to take a long leap off a short pier. That got me wondering what other cases were out there.”

GoFundMe says that less than a tenth of one per cent of its postings are fraudulent. Gonzalez, whose readers send her an average of a dozen potential frauds a week, believes the number to be higher. She said that she reports only on frauds that she can confirm, often through financial evidence from a whistle-blower. Most of those who have contacted her have actual fund-raising needs but have been scammed by third parties—users who set up unauthorized campaigns in other people’s names and then make off with the money. Yet without firsthand reports or submitted evidence, Gonzalez told me, medical frauds are difficult to expose because of privacy laws.

“The only surefire way that you can prove, with minimal effort, that somethingis fake is if you run the campaign photos through reverse image search and you discover that it has a different source,” she said. (Danny Gordon, GoFundMe’s chief business officer, told me that the company does employ algorithmic image- and text-recognition tools in order to flag questionable materials, and is especially vigilant around crises. “After a school shooting, every single campaign that is started for a victim is flagged by our technology and reviewed by the team,” he said.) Another red flag is a shallow social-media presence, which suggests an invented identity.

“The whole GoFundMe thing is weird,” Gonzalez said. “It’s so new that we as a society haven’t decided what’s good and what’s not. I would love there to be some kind of verification, but aren’t people entitled to privacy? Should they be required to share their information to prove they have this illness they’re claiming?” Gonzalez is a libertarian, and likes the idea of people helping one another without involving the government. “I would love GoFundMe to just require a doctor’s note,” she told me. “I would feel really good if they did that.”

Since the acquisition of a majority stake by a group of venture capitalists, in 2015, GoFundMe has been headquartered in Silicon Valley, and today it occupies an aquamarine-glass building that has the aerial profile of a linebacker—a rounded helmet of an entryway, square shoulders, and a slight sway in the curbside wall, as if the whole thing were about to charge. GoFundMe’s C.E.O. since the acquisition, Rob Solomon, works at a standing desk, elbow to elbow with the other employees, who number about seventy. When I visited, I was shown into a conference room called Saving Eliza—named for a young girl with Sanfilippo syndrome (another disease that causes severe developmental disabilities in young children) whose multiyear GoFundMe campaign raised more than two million dollars for a clinical trial. “We’ve become part of the social fabric,” Solomon said, with pride, when he joined me.

He was dressed in a gray Patagonia hoodie and a blue shirt, and he blinked hard as he sat. At fifty-three, he is broad-necked and dimple-chinned, with salted hair at nineteen-eighties length, and he has the beset, apologetic likability of the guy in science class whose chemical reaction inexplicably failed to work. After a few moments of sitting, he stood up and braced against the table in a hamstring-stretch position. He was pretty sure he had a kidney stone, but he hadn’t been to the doctor—he was trying to tough it out. He clenched his jaw, and winced. He said, “Maybe I should start a GoFundMe for myself.”

If he did, the rest of us would have to take the honesty of his anguish on faith. “One of our philosophies is removal of friction,” he said. “We do have software tools that scan every campaign, but, from the point of view of identifying something that might have impropriety, we’re reactive.” He had introduced payout verifications, he said, and had hired some key employees with the skills to detect fraud (“people who have come from Visa and from law-enforcement and military backgrounds”). He also put a lot of stock in online community policing—users raising red flags. Under his watch, the platform introduced a donor-reimbursement guarantee; avoiding or responding to fraud currently claims a third of the company’s budget. (Later, I asked Danny Gordon why GoFundMe doesn’t require medical confirmation—or, for that matter, direct deposits to health professionals. “That is something we are looking at,” he said.)

People can use GoFundMe to fund-raise for nearly any cause they want, and this means that some uses will be unseemly. In 2015, the company shut down a campaign started to help two bakers who had been fined for refusing to make a same-sex-wedding cake. This spring, a group of San Franciscans raised a hundred thousand dollars to fend off a homeless-resource center slated to open in their neighborhood. Around the same time, GoFundMe blocked campaigns for the Hallwang cancer clinic, in Germany, which offers dubious “ozone therapy.” (Hallwang says that its treatments are supported by clinical studies.) “We shouldn’t be a regulator, and we’re not equipped to be one,” Solomon told me. “But a clinic that is creating false hope and charging exorbitant amounts?” GoFundMe banned anti-vaccination campaigns this year on the ground that they were threatening public health.

Solomon told me that he regards universal health care as a human right. “I would much prefer that people don’t have to use GoFundMe to pay for their medical care,” he said. He added that socialized medicine wouldn’t kill his business, because people use the site to pay for more than doctors’ bills and drugs. “In Canada, or the U.K., where care is more evolved, medical is still the largest category for us,” he said. “When you’re sick and out of work, very often you have no income, and GoFundMe is a viable solution.” He blamed the trend toward medical crowdfunding in the United States on income inequality, and cast GoFundMe as a stopgap measure. “We’re going to be the world’s largest health-care company that isn’t actually a health-care company—I think we are,” he said.

Solomon winced in pain again, and rose to reassume his stretch pose. “We interface with everyone,” he went on. “The media, academia, governments, the medical industry, and the drug industry.” I asked what interfacing with drug companies would look like. “ ‘Hey, Mr. Drug Company, did you know that there’s five million dollars of need on GoFundMe for your drug?’ ” Solomon offered. “ ‘We think you should work with us to provide access to your medicine. If you can’t do that, you should provide funding to get people access to their medicine.’ ” The idea was for GoFundMe to advocate on behalf of high-profile campaigns. I wondered about campaigns that never quite achieved escape velocity.

“Everyone has an equal playing field in how they tell their story,” Solomon said. “But the reality is that not everyone is going to be able to raise the same amount of money. It really is dependent on a lot of different factors—like your network or your ability to tell a story that travels.” He grimaced. “The reality of the social Web is that connections are important.”

The problem of crowdfunding is the problem of authority and access. Who has better options now, and by whose grace? It’s often said that the path forward is self-reporting: people should speak their truths without the mediation of external power systems, so that others can respond. “Let’s get these stories out there!” the line goes. GoFundMe has become an object lesson in the insufficiency of just getting the story out there. People can share their needs, we learn, and still be subject to the pathos market, network advantages, or fraud. People can speak their truths and still get lost within a labyrinth of trending interests, channelled audiences, and ten million individuated heartfelt pleas that don’t connect. The risk in giving medical aid on the basis of stories is that the theatre of change trumps actual systemic reform; the guy with resources helps an ailing friend, or donates to a stranger whose experiences resonate, and believes that he’s done his part. Meanwhile, the causes of problems go untouched.

More effective solutions often push at existing processes and institutions. Lisa Bednarz, an experienced social worker at a large New York hospital, manages a team that helps patients get their finances in order for transplants, which are usually very expensive. (Transplants must be followed with long courses of immunosuppressive drugs, which can be costly even for the insured.) Fund-raising in one’s community isn’t new, she told me—in fact, transplant clinics have long recommended presurgery bake sales and the like to make sure that a patient can afford recovery. What has changed, she said, is financial strain. The patient pool seems more cash-strapped now than it was a decade ago. Medically speaking, that isn’t purely bad news; it suggests that transplants may be reaching a widening socioeconomic cohort, and that treatments are improving. (More sick people kept alive for longer means more to pay for.) “But we don’t necessarily look at the calculations from a payer perspective,” Bednarz said.

Bednarz directs patients to sites that “may not be as flashy as GoFundMe,” she told me, but which are more specifically attuned to their needs. For transplants, crowdfunding platforms such as the Children’s Organ Transplant Association, Help Hope Live, and the National Foundation for Transplants can stream funds directly to medical billers and divert what’s left to assist other patients. (Contributions through those sites, unlike through most GoFundMe transactions, are also tax deductible.) “But there are people whose health conditions don’t have national platforms for raising money,” Bednarz said. “If you’re in a traumatic accident, if a young mother or father passes away unexpectedly, I don’t know what’s out there.”

An alternative to finding narrower communities is creating broader ones. The businessman Craig Antico had worked for thirty years in the debt-collection industry, when, in 2012, a business partner connected him with Occupy Wall Street, which was trying to raise fifty thousand dollars to purchase random people’s medical debt. The idea of working with Occupy Wall Street was unappealing to Antico—“It’s not my political way,” he told me—but it was a job, and he took it. Americans acquire medical debt when they don’t pay bills. Creditors can sell their debt at a discount to agencies, which hope to turn a profit through collections. The Occupy idea was to buy debt with no intention of ever collecting it—effectively zeroing it out.

Antico made his usual assessments, except instead of choosing the debts more likely to be paid he picked the debts less likely to be paid, and instead of sending collection notices he sent letters telling people that their debt was gone. In the course of three years, as the debt buyer for Occupy’s Rolling Jubilee Fund, he cancelled more than thirty million dollars’ worth of high-risk debt for seven hundred thousand dollars of donors’ money. Occupy moved on, but Antico didn’t want to. With a partner, he founded a charity called R.I.P. Medical Debt and started raising more donations. In collaboration with four universities, the charity now performs randomized trials on its portfolios to study whether they’re optimizing their investments—getting the most burdensome debt for the least amount of money. With this empirical information, Antico and his colleagues can court truly large donations from individuals and foundations, eliminating billions of dollars’ worth of American medical debt at once. It doesn’t mean patients won’t tumble off the cliff of medical expense, but it helps make sure that the fall will not be lethal.

“We had to make some cutbacks.”

In other cases, medical expenses can be wiped before they appear—sometimes even through GoFundMe itself. This past October, a thirty-year-old writer and activist named Rachel Cargle launched a campaign called Therapy for Black Women & Girls. A photograph of Cargle at the Women’s March in Washington, D.C., had gone viral the previous year and had given her a large social-media audience. Her idea for using that audience, though, was unusual. She received free mental-health care through Columbia University, where she is a student, but she realized that many other black women had no such luck—partly for financial reasons, partly owing to weak networking among black therapists, and partly, Cargle thought, because mental-health care has been stigmatized in some African-American communities. She wanted to pool donations to pay the therapy bills of other black women, using her social-media following as a lever. She initially set her GoFundMe target at ten thousand dollars, and included a link for women who wanted to receive the funds. She reached the target within twenty-four hours.

As of this writing, the Therapy for Black Women & Girls GoFundMe page has taken in more than two hundred and forty thousand dollars. Cargle closed registration for therapy support after enrolling four hundred women; money was wired directly to their therapists. The administrative work was less onerous than one might think, Cargle told me, because, aside from requesting basic billing data, she asked no questions: it was crucial, she thought, that women seeking mental-health coverage not be made to tell their stories.

“For black women, in order to get any kind of support in this country, we have to constantly prove our pain with this sob story about, you know, ‘My mother was on drugs and my father went to jail,’ ” Cargle said. “We’re conditioned to feel as if we don’t deserve something unless we’ve been through the worst of the worst.”

At the end of the year, Cargle filed for 501(c)(3) status to create what she calls the Loveland Foundation. She is moving fund-raising off GoFundMe, to avoid transaction fees. “I’m so grateful to GoFundMe—I wouldn’t have been able to do it without them,” she told me. “But, now that we’ve got our nonprofit status, I’m looking forward to getting out.”

Neighbors and strangers were stopping by the Ilinetskys’ garage sale, in Concord. “We’re downsizing to a smaller apartment, to get more funds to keep the physical therapy going,” Zohar said. “We’re selling tons of shit.” The new place would be in Marin County, which was more expensive, but Gabi would no longer have to drive four hours to and from the twins’ NeuroMovement session each day.

Yael was on a blanket on the floor, with toys. Zohar held Yoel, looking drained and sad. He loved every day of being a father—their father—but life in his adopted country had been disillusioning. “The United States is very radical,” he said, suddenly tipping Yoel forward and drumming on his back until he belched. “I want a government and a President who is flexible, who understands that you can’t lead people’s lives in black-and-white options.”

Gabi came in from the garage. “Quick question,” she said. “This guy is interested in your ladder.”

“The heavy one?” Zohar said.

“They’re all heavy,” Gabi said. “And the toolbox.”

“I paid four hundred dollars for both of them together,” Zohar said. He stared for a moment at the wall. “Tell him whatever he wants to pay.”

Zohar leaned over, Yoel still in his arms, and tickled Yael’s feet. “Up! Up! Up!” Zohar said.

“To make a flexible government, a government that can maneuver between the right and left and let everybody live with their values, is very hard,” he went on. “It’s way easier to say, ‘I’m going this way’ or ‘I’m radical that way, no matter what the consequences are.’ People are used to choosing the easier option, and this technology decade is only making that stronger.”

Gabi returned and sat by the twins. “In all of this, we try to be optimistic and also to have realistic expectations,” she told me, and looked at the kids. Zohar still had Yoel in his arms. He drew the baby close and began speaking into his face; Yoel smiled.

“It will take them longer to reach milestones,” Gabi said. “I’m constantly asking myself, ‘What’s the right thing developmentally for this age?’ And then: ‘What’s the right thing for them?’ ”

“There’s a girl in the therapy institute that we’re going to who was born with a third of her brain missing,” Zohar said. “In ten years, they got her to walk.”

“She finished two master’s degrees,” Gabi said. “She’s married.”

There was a silence. Gabi gave me an imploring look. “How are we supposed to parent?” she asked. Yael, on a blanket at their feet, began to babble and coo. “So much of parenting is about investing in your children so that they can be successful in life,” Gabi said. “But what we learned very quickly is that we have to invest in them for today.”

Yael called out, and Gabi looked straight at her. For a moment, the space between them seemed a cold and measurable object. “For today,” she said again. ♦

[“source=newyorker”]