GoFundMe has become a health care utility

GoFundMe started as a crowdfunding site for taking on “ideas and dreams” and, as GoFundMe co-founders Andrew Ballester and Brad Damphousse once put it, “for life’s big moments.” In the early years, he funded honeymoon trips, graduation gifts and church missions to hospitals abroad in need. Now GoFundMe has become a popular platform for patients trying to escape the nightmares of medical bills.

One study found that, in 2020, the annual number of medical-related campaigns in the US—about 200,000—was 25 times greater than the number of such campaigns on the site in 2011. More than 500 current campaigns are dedicated to asking for financial assistance to treat people, mainly children, who have spinal muscular atrophy, a neurodegenerative genetic condition. The recently approved gene therapy for young children with the condition, from drug company Novartis, has a price tag of about $2.1 million for a single dose of treatment.

Perhaps the most damning aspect of this is that paying for expensive care with crowdfunding is no longer considered unusual. Instead, it is normalized as part of the health system, like having a blood test or waiting for an appointment. Do you need a heart transplant? Start a GoFundMe to get on the waiting list. Turning to GoFundMe when dealing with bills has become so accepted that, in some cases, patient advocates and hospital financial aid officers are recommending crowdfunding as an alternative to sending to collections. My inbox and the “Bill of the Month” project (a collaboration of KFF Health News and NPR) have become a kind of complaint office for people who can’t pay their medical bills, and I cringe every time a patient tells me they’ve been told that GoFundMe is their best option.

GoFundMe recognizes the trust patients place in its platform. Ari Romio, a spokesman for the company, said “medical expenses” are the most common category of fundraisers it hosts. However, he declined to say what percentage of the campaigns are medically related, because people who start a campaign choose the cause of the fundraiser themselves. They might choose the family or travel category, he said, if a child needs to go out of state for treatment, for example. So while the company has previously estimated that about a third of the funds raised on the site are related to costs for illness or injury, that could be an undercount.

Andrea Coy of Fort Collins, Colorado, turned to GoFundMe in 2021 as a last resort after an ambulance bill pushed her family’s finances to the brink. Sebastian, her then-1-year-old son, had been admitted to a local hospital with pneumonia and then airlifted to Children’s Hospital Colorado in Denver when his oxygen levels dropped. REACH, the air ambulance company that contracted with the hospital, was out of network and billed the family nearly $65,000 for the ride — more than $28,000 of which Coy’s insurer, UnitedHealthcare, paid. Even so, REACH continued to send Coy’s family bills for the balance and later began calling Coy regularly to try to collect — enough that she felt the company was harassing her, she told me.

Coy made calls to her company’s human resources department, REACH and UnitedHealthcare for help solving the case. He applied to various patient groups for financial assistance and was turned down again and again. Eventually, the balance owed was reduced to $5,000, but even that was more than she could afford on top of the $12,000 the family owed for Sebastian’s actual treatment.

That’s when a hospital financial aid worker suggested she try GoFundMe. But, as Coy said, “I’m not an influencer or anything like that,” so the appeal “only provided a bit of temporary relief – we hit a wall.” They are deep in debt and hoping to get out of it.

In an email response, a REACH representative noted that they could not comment on a specific case because of patient privacy laws, but that if the ambulance ride occurred before the federal No Surprises Act went into effect, the bill was lawfulness. (That act protects patients from such ambulance bills and has been in effect since Jan. 1, 2022.) But the spokesman added, “If a patient is experiencing financial hardship, we work with them to find equitable solutions.” What is “fair”—and whether that includes seeking an extra $5,000, on top of a $28,000 insurance payout, to transport a sick child—is, of course, subjective.

In many ways, the research shows, GoFundMe tends to perpetuate the socioeconomic disparities that already affect medical bills and debt. If you’re famous or part of a circle of friends who have money, your crowdfunding campaign is much more likely to succeed than if you’re middle-class or poor. When the family of former Olympian Mary Lou Retton started a fundraiser on another platform, *spotfund, for her recent intensive care unit stay while uninsured, nearly $460,000 in donations quickly poured in. insurance because of a preexisting condition—dozens of orthopedic procedures—the Affordable Care Act prohibits insurers from denying coverage to people because of their medical history or charging them unusually high fees.)

And given the price of American health care, even the most robust fundraising can feel inadequate. If you’re looking for help paying for a $2 million drug, even tens of thousands can be a drop in the bucket.

Rob Solomon, CEO of GoFundMe from 2015 to March 2020, who in 2018 was named one of Time magazine’s 50 Most Influential People in Health Care, said he would “love nothing more than to don’t be the “medical” category on GoFundMe. .” He told KFF Health News that “the system is terrible. It needs to be re-examined and re-equipped. Our politicians are failing. Our healthcare companies are failing us. These are realities.”

However, despite the noble ambitions of its original vision, GoFundMe is a private for-profit company. In 2015, the founders sold a majority stake to a group of venture capital investors led by Accel Partners and Technology Crossover Ventures. And when I asked about medical bills being the most common reason for GoFundMe campaigns, the company’s current CEO, Tim Cadogan, sounded less critical than his predecessor of the health system, whose high prices and financial hardship have arguably made his company famous.

“Our mission is to help people help each other,” he said. “We are not and cannot be the solution to complex, systemic problems that are best solved by meaningful public policy.”

And this is true. Despite the hopeful atmosphere of the site, most campaigns generate only a small fraction of the money owed. Most medical spending campaigns in the US fell short of their goal, and some raised little or no money, according to a 2017 study by the University of Washington. Campaigns reached an average of about 40% of their target amount, and there is evidence that returns — measured as a percentage of their targets — have worsened over time.

Carol Justice, a recently retired civil servant and longtime union member in Portland, Oregon, turned to GoFundMe because she was faced with an unexpected bill for bariatric surgery at Oregon Health & Science University.

She expected to pay about $1,000, the amount she had left over from her deductible after her health insurer paid the $15,000 maximum for the surgery. He didn’t understand that a cap meant he would have to pay the difference if the in-network hospital charged more.

And he did, leaving her with an $18,000 bill, to be paid all at once or in monthly increments of $1,400, which was “more than my mortgage,” she said. “I was faced with filing for bankruptcy or losing my car and my house.” She made several calls to the hospital’s financial aid office, many unanswered, and received only unfulfilled promises that “we’ll get back to you” about whether she qualifies for aid.

So, Justice said, her health coach — provided by the city of Portland — suggested she start a GoFundMe. The campaign brought in about $1,400, just one monthly payment, including $200 from the health coach and $100 from an aunt. He dutifully sent every donation directly to the hospital.

In an emailed response, the hospital system said it could not discuss individual cases, but that “financial aid information is readily available for patients and can be accessed at any point in a patient’s journey with OHSU. From In early 2019, OHSU worked to remove barriers for patients with the greatest need by providing a Fast Track for Financial Aid that, if a certain threshold is met, awards financial aid without an application process.”

This fairy tale has a happy ending. In desperation, Justice went to the hospital and checked into the financial aid office, where she had a tearful meeting with a hospital representative, who decided that — given her finances — she wouldn’t need to pay the bill.

“I had gone through the range and I just cried,” she said. He said he would like to repay the people who donated to the GoFundMe campaign. But, so far, the hospital won’t refund the $1,400.