“The Perverse Logic of GoFundMe Health Care,” Nathan Heller’s report for the July 1 edition of The New Yorker, is a powerful mix of pathos, business reporting and ethical analysis.
What it is not is a report that shows clear interest in this story’s obvious religion angles that cry out for attention.
Heller tells the agonizing story of Zohar and Gabi Ilinetsky, a couple who met in Israel, are married and living near San Francisco, and whose year-old twins, Yoel and Yael, have Canavan disease, which likely will kill them during their childhood. The Ilinetskys turned their hope to raising $2 million through GoFundMe to pay for their children to receive, in Heller’s words, “a gene-replacement treatment being developed by Paola Leone, a neuroscientist at Rowan University, in New Jersey.”
Heller provides sobering facts about what the twins have experienced, what they are likely to experience in the future, and what hope the Ilinetskys sees in Leone’s treatment and a physical therapy program called NeuroMovement. (“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.”)
We learn that Zohar had resisted turning to GoFundMe:
“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.
We learn that the Ilinetskys believe in using guns in self-defense:
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.”
But we learn essentially nothing about how their beliefs as Jews shape their commitment to their twins. Instead, Heller writes this, as though belonging to a synagogue is something akin to joining the local Rotary:
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.
Heller mentions earlier in the report: “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.” Does this sound like a father for whom Judaism is happenstance?
Heller also mentions, toward the report’s conclusion, that GoFund Me draws certain boundaries about what people it will allow to seek funds:
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.
The bakers in questions are Melissa Elaine Klein and her husband, Aaron Wayne. They own Sweet Cakes by Melissa in Gresham, Oregon. They were not merely fined ($135,000, by the way) but driven out of business.
But such is life when one’s principles have become unseemly, by the standards of 21st-century America.
ybvdadminuser
