A Blog by Jonathan Low


Jul 1, 2019

The Hidden Costs Of Go-Fund-Me Healthcare

The evidence now suggests that GoFundMe campaigns dilute public perceptions of the need for a better, more comprehensive health care system. JL

Nathan Heller reports in The New Yorker:

The United States has the highest health-care costs in the developed world. A third of the money raised on GoFundMe in 2017 was for medical expenses. Since 2008, health-insurance deductibles have increased eight times as quickly as wages. 42.4% of the 9.5 million people diagnosed with cancer between 2000 and 2012 had depleted their assets within two years. GoFundMe has become a negative-space portrait of our country’s teetering medical finances, a repository for the costs that patients and underwriters cannot or will not cover. Advantages in crowdfunding go to the people who arrive with the most powerful connections and the best networks. After that, whoever has the most heartrending story wins.
For those who want their hearts broken, the story of Zohar and Gabi Ilinetsky, the parents of one-year-old twins, is a world to live inside. Zohar: twenty-seven, confident, and voluble, a construction project manager proud of his work. Gabi: fastidious, attentive, academic, an early-education specialist who used to work at a preschool. They met in Israel, where he grew up, and settled in the San Francisco Bay Area, her childhood home. While dating, they would speak often about the parenting styles that they hoped to have. “We’re old-school people,” Zohar told me recently. “My friends now are waiting until thirty-five to start thinking about kids, but always we knew we were going to get married. We knew we were going to have children.”
To their delight, Gabi gave birth to twins: a boy, a girl. They called the children Yoel and Yael. Zohar, who does not believe in baby talk, had long, one-sided conversations with his newborn children, in Hebrew; he thought that they could understand him, or soon would. Before long, his son did the most precocious thing an infant can and rolled over. It was while watching Yoel roll on the floor one day, chatting to him as if to a middle-aged man, that Zohar noticed a fleeting peculiarity in his son’s eyes, which seemed to flicker back and forth, like the pupils of somebody trying to read a subway-station sign through the window of a moving train.
Until then, doctors had assured the Ilinetskys that the babies were healthy. Gabi took Yoel to the pediatrician, who told her not to worry, that Yoel seemed fine. But Gabi worried. She went to a second pediatrician, and a third. The Ilinetskys buy family insurance through the Kaiser Permanente network, and it costs them about fifteen hundred dollars a month. Against the pediatricians’ counsel, Gabi demanded a referral to a specialist, and Yoel underwent an MRI and other tests. At four months, he was given a diagnosis of Canavan disease, which causes rapid degeneration of the brain and, almost always, death in childhood. For a while, his parents were in shock. “After shock,” Zohar said, “comes depression.”
Infants born with Canavan seem normal at first, but they lack an enzyme crucial for the growth of white matter, the myelin layer that protects and connects neurons in the brain. Signals cross—Yoel had his first seizure at ten weeks—and motor control decays. Canavan babies typically lose the ability to hold their heads up. Their intellectual development falls off; they never learn to talk. Before long, a thickening agent had to be added to Yoel’s bottles, because his weakening swallow and gag reflexes made him prone to choking. He had to be vigilantly burped, because his digestive tract lacked normal muscle activity. The recessive gene for Canavan, as for the better-known Tay-Sachs disease, crops up most often in the Ashkenazi Jewish population, and Gabi and Zohar found that they were both carriers—meaning that any children they conceived would have a one-in-four chance of being born with the disease. With Yoel, some signs had always been there: his precocious rolling, for example, came from spastic tensing in his muscles. But now the Ilinetskys worried about Yael.
Testing showed that Yael had Canavan, too. Until then, the Ilinetskys had thought of themselves as a couple with two children, one with special needs and one without. Now they were facing the terminal brain decay of both kids. Through their own research, the Ilinetskys found a physical-therapy program called NeuroMovement, which purports to cultivate brain plasticity. Six days a week, Gabi drove the twins two hours across the Bay, from Concord to Marin County, for an hour and a half of treatment, and then drove back.
The Ilinetskys said that the therapy shows signs of success: Yael can reach out, grab toys, and do other things that many Canavan babies can’t, and Yoel seems more alert. Beyond the daily therapy, Zohar and Gabi have pinned their hopes on a gene-replacement treatment being developed by Paola Leone, a neuroscientist at Rowan University, in New Jersey. Leone’s team aims to replace the mutated gene in Canavan patients with a normal version, packaged in a special virus that “infects” primarily white-matter cells. The procedure, one of several gene-therapy protocols in development for Canavan patients, has been effective in rodents; it is awaiting funding and F.D.A. approval to enter Phase I trials.
For the Ilinetskys, the challenge was cost. They pay three thousand dollars a week for NeuroMovement, which is considered experimental and therefore isn’t covered by insurance. Leone, meanwhile, needs $3.5 million to fund a clinical trial of her treatment for a group of Canavan children, potentially including Yoel and Yael. Frustrated with the system, the Ilinetskys decided to go outside it. “We thought maybe we could buy a few thousand lottery tickets,” Zohar said, grimly.
Instead, in December, they requested two million dollars on the Internet fund-raising platform GoFundMe. “We need your help,” Gabi wrote on their campaign page, which included pleas in Hebrew, Russian, and Spanish. Through donations mostly from strangers, they raised more than a quarter of a million dollars in the first two months.
Crowdfunding, or raising money without pursuing donors individually, isn’t new; consider bake sales, telethons, or the Salvation Army drum. But the endeavor, like sharing photographs and shopping, has gained form and focus in an age of digital connection. On the Internet, crowdfunding is distinguished by its scale. As of 2017, GoFundMe alone had raised five billion dollars. That money has helped many of its users, and it has helped the company grow.
GoFundMe was officially founded, in 2010, by Andy Ballester and Brad Damphousse, who had met at a text-messaging startup. Since then, the company has hosted more than two million fund-raising campaigns in nineteen countries, joining other platforms, such as Indiegogo and Kickstarter. Unlike those, GoFundMe is associated with causes more than it is with projects, in part because it has a history of offering relief in disaster zones. On June 12, 2016, after a gunman opened fire at the Pulse night club, in Orlando, a GoFundMe campaign was started for victims and their families. A hundred and nineteen thousand people donated, raising almost eight million dollars. In late 2017, the Time’s Up Legal Defense Fund launched a campaign for victims of sexual assault, raising about twenty-five million dollars. All of this followed Taylor Swift’s use of the platform, in 2015, to send fifty thousand dollars to a blond girl with leukemia, an act that inspired GoFundMe to raise individual-donation maximums from fifteen thousand dollars to fifty thousand dollars.
Owing to such magic-seeming intercessions, GoFundMe has acquired a wishing-well mystique. The sorts of help that people seek, meanwhile, trace the profile of American need. A third of the money raised on GoFundMe in 2017 was for medical expenses. This isn’t surprising, given that the United States has the highest over-all health-care costs in the developed world. Since 2008, health-insurance deductibles have increased eight times as quickly as wages. A study in The American Journal of Medicine last fall found that 42.4 per cent of the 9.5 million people diagnosed with cancer between 2000 and 2012 had depleted their assets within two years. Like the vase between the faces in the famous optical illusion, GoFundMe has become a negative-space portrait of our country’s teetering medical finances, a repository for the costs that patients and underwriters cannot or will not cover on their own.
Starting a GoFundMe campaign is easy. Users select from categories that follow the seasons of a human life: “education,” “competition,” “newlywed,” “business,” “family,” “community,” and so on; then, less cheerfully, “medical,” “emergency,” and “memorial.” They title the campaign and enter a target amount. (“If you’re not sure where to start,” the platform offers, try a thousand dollars.) Then they upload a photo or a video and, in a box labelled “Tell your story,” lay out their predicaments. GoFundMe used to take a five-per-cent commission, but since 2017 it has waived that fee for personal fund-raising in the United States. (A 2.9-per-cent charge still goes to payment processors.)
The platform has the familiar social-media effect of publicizing private struggles. Patterns emerge. A common theme among medical fund-raisers is feeling locked out of the system: not knowing whom to call next, or how to push past a bureaucratic blockade, or whether there are any options left. Class in the United States is commonly framed in terms of money or profession, but those things fluctuate in the course of an adult American life in a way that class usually does not. A more telling index of class is access to opportunity—one’s sense of how to begin to begin, one’s social sphere. The true mark of class vulnerability today isn’t the capacity to run out of money but the capacity to run out of options. In the blind alleys of public health, GoFundMe has become both a first stop and a last resort.
“When we started the fund-raising campaign, it was something that I personally didn’t feel comfortable with,” Zohar Ilinetsky told me when I visited him and Gabi at home one morning. He worried that people would mistake him for a taker of handouts. “I’m a capitalist to the bone,” he said. “But, when it comes to medicine, this is wrong—it’s inhumane. It’s like telling someone, ‘When you die, you’ll lie on the street, because you don’t have money for a funeral.’ ”
In Israel, he said, everyone has free coverage for all expected medical needs, from preventive care to transplants and mental health. “I remember, even as a kid, hearing people talking about how horrible the medical system in America was,” he told me. Bearded and stocky, Zohar has a lilting baritone and an open, histrionic personality that comes across as charming. Gabi—auburn hair, leggings—smiled as he expounded his case with flailing arms. She was the one who had convinced him that GoFundMe was worth trying. “I just didn’t have any other choice,” Zohar explained.
Concord, northeast of Oakland, is the kind of California suburb in which every block feels like a poured pancake and no one can get anywhere on foot. The Ilinetskys’ house, white and one level, shouldered up against a large garage. A sculpted sign on the front door read “MIsHPACHAT ILINETSKY”—the Ilinetsky family. Another, above the doorbell, displayed twin revolvers with crossed barrels and read “WE DON’T CALL 911.”
Inside, Gabi had been preparing a bottle for Yoel. She settled in with him on her lap, gently holding up his head, as if to puppet a stuffed animal that had gone floppy from love. After a while, Yael woke in the next room and cried. Gabi went to get her, and Zohar took Yoel. The baby had large blue eyes and blond hair—“my little Swedish guy,” Zohar called him.
While the twins were being diagnosed, Zohar had taken days off work for their appointments. “I had to personally go and fight for every damn test,” he said. The twins’ care kept Gabi from working, too, and the couple worried about finances. They sought help from In-Home Supportive Services, a state program that arranges household aid for disabled people, and Supplemental Security Income, the federal program that provides extra support in cash. Determining eligibility was projected to be an eighteen-month process.
“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.


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