“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: