In April 2013, Akiva and Amanda Zablocki noticed that their eight-month-old son, Idan, was breathing strangely. Probably just a garden-variety virus, the pediatrician told them, one that just needed to run its course. For the next two weeks, they watched and waited—“he played, ate, and seemed perfectly normal,” Akiva wrote on the family’s blog, “except for his respiratory rate”—but when Idan’s energy level seemed to drop, they took him back for another look and an X-ray.
This time, the doctor sent them straight to the hospital, where Idan was admitted to the pediatric intensive-care unit and given oxygen to help him breathe. It was a few more days before doctors identified what was wrong with his lungs: PCP, a fungal pneumonia typically seen in AIDS patients. A test for the HIV virus was negative, and Idan was placed on a ventilator as doctors struggled to figure out why an otherwise healthy baby had an infection most commonly found in people with immune deficiencies.
The answer, they soon discovered, was hyper IgM syndrome, a genetic disease that affects just two out of every million people and renders the body’s immune defenses useless against even the mildest of infections. Immediately, the Zablockis’ lives became a flurry of financial calculations: Idan would need weekly immunoglobin infusions, which would cost thousands of dollars a month, until he could undergo a bone-marrow transplant, the only known cure for the condition. The transplant itself would cost hundreds of thousands of dollars; if it was unsuccessful, he would need the infusions for the rest of his life. And because daycare posed too much of a risk for Idan’s fragile immune system, Akiva would quit his job to stay home and take care of him, leaving the family with one income to cover it all.
It was a battle to get their insurance to cover Idan’s infusions, Akiva said; ultimately, they were able to get coverage for the treatment he would receive at home, but not the infusions in the hospital. And when the family chose a hospital to do Idan’s bone-marrow transplant after months of research, they faced another fight. The hospital in Seattle—across the country from their home in Manhattan—used treosulfan, a drug that didn’t have as many side effects but was still in clinical trials in the U.S. Eventually, he said, the family’s insurance company agreed to part of cover the procedure, but they were still overwhelmed by the amount they owed beyond what insurance would pay for—and knew that more bills were coming.
So they turned to the Internet.
In May, a month after Idan’s diagnosis, Amanda and Akiva launched a page on YouCaring.com, which describes itself as a fundraising website for “personal and charitable causes.”
“We need your help raising funds to enable us to make sure that, no matter what happens to us, Idan has the best possible medical care, a successful transplant, and enough funds to cover the medical costs he will incur along the way,” they wrote. “We know we cannot do this alone.” Their goal was $250,000.
Within the first two weeks or so, Akiva said, “we raised almost $50,000 or $60,000, just from family and friends.”
Then, in July, The New York Daily News published a story on the Zablockis’ fundraiser; over the course of the next week, CBS, ABC, and NBC all ran stories on the family’s struggle to pay for Idan’s treatment. The money began pouring in even faster.
“At that point, there were a lot of people donating that we didn’t know who they were,” Akiva said. The media attention “was a huge bump as far as the legitimacy, because there are so many medical fundraisers out there.”
Which sometimes made him and Amanda wonder: Why had Idan’s been the one to catch on? “We were always trying to figure that one out,” he said. “Over those few weeks when there was the most attention, we were like, ‘Why is everybody so interested?’”
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Sites like YouCaring, GoFundMe, and Indiegogo Life cumulatively host thousands of pages set up by people looking for help with medical expenses, from cancer treatment to in-vitro fertilization (IVF). These crowdfunding pages are a place for family and friends to help out and receive updates on the status of a loved one’s health—but they’re also a place where strangers can log on and make a donation to someone they’ve never met before.
“I think we’re seeing the emergence of what we sometimes call peer-to-peer charitable giving,” said Leonard Lee, the head of communications for YouCaring. “So the notion that you’re not just giving to an organization that then decides how it’s going to use the funds. [Donors] can say, ‘I’m giving to this specific person, I identify with their need.’”
To choose one, though, also means to choose it over all the others.
Donating to a medical crowdfunding campaign requires donors to be at once more intimate with and more judgmental of the recipients. At its most basic and most callous, the act of giving boils down something not unlike comparison shopping: Who, out of all the people who have shared their tragedy on the Internet, is the most deserving of money? And, before that, who can entice donors to click?
As medical crowdfunding has become more popular, so too has the idea of its so-called “perfect victim,” said Margaret Moon, a bioethicist and professor of pediatrics at Johns Hopkins University: the person whose inability to pay for their care came down to sheer bad luck—and bad coverage, if they had any insurance at all. “They’d done everything right, they’d explored all the possibilities and were still left short,” she said. “The people donating to these sites don’t know if somebody’s made a request because they just couldn’t figure out their insurance, or because their insurance failed them. Wouldn’t you be more willing to donate to someone who had played out their insurance?”
The Zablockis, by this definition, are the perfect crowdfunding campaign—but before people could read their story and learn the ins and outs of their struggles with insurance, they had to be drawn in. Akiva had another theory for why Idan’s story had resonated so strongly: “He’s a really cute kid,” he said. It’s true—the family’s blog is filled with photos of Idan, plump and cheerful, even in the pictures taken in the hospital room.
“[When] he was on a ventilator and couldn’t breathe on his own and was restrained to the bed, he was smiling and engaged and his eyes were open and he was communicating,” Amanda added. “I think it spoke to people.”
Before the donors can choose who to fund, the sites themselves make a choice about who will be allowed to ask for funding at all. In September 2014, GoFundMe made headlines after it shut down the fundraising page of a woman named Bailey, who was collecting money for an abortion. She had no insurance, Bailey wrote on her page, and complications from a “rough, unplanned, and unexpected” pregnancy had left her unable to keep a job.
After removing Bailey’s fundraiser (she was allowed to keep the money that had been donated up until that point), the site issued a list of causes that would be prohibited going forward, including “directly funding an abortion (human or animal).”
“As we scale, it’s important that GoFundMe is used in ways that our community and company can be proud of,” the company said in a statement. (Lee, of YouCaring, said his site has a similar policy: “We do not permit crowdfunding campaigns that could be considered divisive to our community,” he said. “Abortion would be a good example.”)
“GoFundMe is a private company, and like Chik-fil-a or Starbucks, it can do pretty much whatever it wants,” Caitlin Dewey wrote in The Washington Post shortly after the new guidelines were released. “But it’s a fascinating departure for a site that previously billed itself as a platform for literally everyone and everything.”
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When Akiva and Amanda began their search for a hospital to perform Idan’s bone-marrow transplant, Akiva said, almost all the ones they visited “would provide us with these pamphlets saying, ‘Transplant is very expensive, it can cost over a million dollars, we recommend fundraising … It was actually a little bit comical, because they recommended bake sales and local church or synagogue fundraisers.”
For them, crowdfunding was the clearly superior alternative: Not only could it bring in more money than a synagogue bake sale, it could also allow Idan’s story to travel beyond their immediate social network. On the Internet, their cause could become unbound from where they lived and who they knew.
“We never said, ‘Please donate.’ We always said, ‘Please like and share,” Amanda said. “At the end of the day, a person who’s donated a fixed amount and then gone away has donated that fixed amount. But a person who doesn’t donate anything but spreads it to 10 other people, and they spread it to 10 other people … The sum of those donations is going to be more, and the sum of the information [spread] is going to be more.”
But the Internet’s potential to relieve the burden of medical bills isn’t distributed equally, said Elizabeth Yuko, a bioethicist at Fordham University’s Center for Ethics Education: “In order to create these profiles, you have to have access to a computer, you have to be relatively tech-savvy.”
“If we use crowdsourcing for healthcare costs as a way to replace what a good healthcare system might do, then we’re really creating a new health disparity,” Moon agreed. But to her, the most pressing ethical question surrounding medical crowdfunding is not the inequalities it illuminates, or how donors choose who to fund, or how sites choose who to host—it’s why the practice has become necessary in the first place.
“There’s a concern that it will become a pop-off valve for a healthcare system that’s not doing its job.” she said. “If someone’s raising money to cover the cost of cancer treatment, the question that raises on the other side is, why is our healthcare system not paying for necessary care?”
It’s a fair question, but it’s also one that people like the Zablockis—and Bailey—have little time for.
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When people open fundraising pages on YouCaring, “We recommend that they be open and honest,” Lee said. “People will relate to it.”
But the opposite of openness, on the Internet, is privacy—and emphasizing the former means that concerns for the latter must be abandoned. A campaign’s success can depend on how much it divulges of a person’s health history, financial situation, and even genetic makeup, information that will live online long after the fundraising ends.
For families using crowdfunding to pay for IVF or other fertility treatments, the concern may be magnified: “There will be children whose personal information is out there on the Internet already, and the parents won’t have the control they would normally have in that situation,” Yuko said. “It’s basically the details of their conception.”
Even in cases that don’t involve fertility, “you’re sort of forever identified online as someone who’s chronically ill and of reduced means or limited means,” Moon said.
For the Zablockis, the tradeoff was worth it. Their page raised around $250,000, enough to cover Idan’s transplant and some related medical expenses, and connected them with other parents around the world whose children had hyper IgM. Their advice to these families is the same as Lee’s: “We’ve told other families to be honest, tell your personal story, don’t shy away from telling the truth and being very honest about the struggle,” Akiva said.
Their own is still ongoing—Idan’s bone-marrow transplant turned out to be unsuccessful. With about a third of the money left, the family is considering another transplant. Without it, Amanda said, Idan faces “a shortened life where he’s going to be in and out of the hospital.” The average lifespan for hyper IgM patients is 24 years.
But they’re unsure at this point whether they would re-open the fundraiser. “It’s hard to say … We’ve learned a tremendous amount going forward as far as the arguments we need to make to the insurance company, the appeals, and it doesn’t feel quite as overwhelming as it did before,” Amanda said. “We feel like we’re now in a position to do what we have to do.”
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