Sarah Winston knew COVID-19 had hit her daughter hard. On Saturday, Ella’s fever topped 104 degrees. She coughed and vomited uncontrollably. By Sunday, dehydrated and pallid, Ella couldn’t pull herself off the bathroom floor.
But Winston also knew Ella didn’t fit the stereotype for severe cases. Seventeen and healthy, she was a competitive dancer with no underlying conditions. (Winston thinks Ella contracted the infection at a dance competition the previous weekend.) So when Winston, 45, drove her daughter to Children’s Minnesota in Minneapolis on Nov. 1, she assumed the doctors would give Ella fluids and send her home.
Instead, they kept her overnight, then moved her to intensive care.
The scope of the virus’ damage soon became clear: kidney failure, pneumonia, liver distress, dangerously low blood pressure, a heart blockage. Over the next few days, Ella developed a staph infection and heart arrhythmia.
Winston didn’t leave Ella’s room for 10 days — not to shower, not even to stretch her legs.
By Friday, Ella’s cardiac tests began to improve. The doctors had started her on Remdesivir to battle the infection. She was alert enough to FaceTime with friends.
But Winston didn’t get to exhale before she was gut-punched by a new crisis: The hospital informed her that her healthcare plan wouldn’t cover Ella’s stay. Not one cent of a bill certain to run into the six figures.
“I discovered today that my health insurance has ZERO coverage for hospitalizations,” she texted friends. “At this point, there’s nothing I can do. … My baby girl needs to be treated.”
Her outward stoicism belied internal panic. A single mother of three — Ella, her sister Jada, 19, and brother Owen, 14 — Winston faced the prospect of ruinous debt.
Jen Gordon Rasmussen, a longtime friend, says she knew Winston was too proud to ask for help. So Rasmussen did it for her. She put Winston at the mercy of what’s become America’s de facto insurer of last resort: GoFundMe.
By its own count, GoFundMe hosts more than 250,000 medical crowdfunding campaigns a year that generate more than $650 million worldwide. For the uninsured and underinsured, the site offers hope that generosity will succeed where the healthcare system has failed.
Winston hated the idea. Absolutely not, she told Rasmussen.
“Sarah, you need this,” Rasmussen replied. “I’m doing it.”
Entering the word “medical” in GoFundMe’s search bar produces nearly 1.5 million results: children fighting cancer, hit-and-run victims, burn victims, memorial funds, dogs in need of veterinary care. The first several hundred campaigns the site’s algorithm displays have typically netted tens or hundreds of thousands of dollars, sometimes millions.
Keep scrolling, however, and there are pages for an uninsured stage 4 lung cancer patient in Virginia that raised $2,230, a Colorado baby with a rare congenital insulin condition that raised $1,507, a California veteran with posttraumatic stress that raised $1,230, and a Florida 19-year-old with brain cancer that raised just $975.
Because GoFundMe doesn’t make its data public, there’s no consensus on what the “average” medical campaign achieves, only estimates. One random sample, analyzed in PLoS One in 2020, found that the mean U.S. medical GoFundMe generates about $3,700. Another, reviewed the same year in the Journal of the American Medical Association, had a rosier median estimate of $38,204. A 2016 article in Social Science & Medicine reported that 90 percent of medical campaigns never reach their goals. In the JAMA study, however, nearly a third hit their target.
GoFundMe launched in 2010. In its first year, the site hosted 42 medical crowdfunding campaigns, according to new research in JAMA. But it didn’t take long for “Medical” to surpass things like honeymoons and business startups and become GoFundMe’s largest category.
By 2018, GoFundMe hosted more than 119,000 medical campaigns that asked for more than $4.6 billion. Between 2010 and April 2019, medical crowd funders sought more than $10 billion and raised more than $3.6 billion. (As with other categories, GoFundMe charges 30 cents per donation plus 2.9 percent of the total haul.)
In 2019, by which point GoFundMe controlled 90 percent of social crowdfunding in the U.S., Time Magazine named CEO Rob Solomon — who took over the company in 2015, when it was acquired by venture capitalists — one of the 50 most influential people in healthcare.
“We didn’t build the platform to focus on medical expenses,” Solomon told Kaiser Health News that year. (GoFundMe did not respond to multiple interview requests.)
“Politicians are failing us,” he added. “Healthcare companies are failing us. … We shouldn’t be the solution to a complex set of systemic problems.”
Crowdfunding success can have life-or-death consequences. It might determine whether someone is placed on an organ transplant list — transplant centers require prospective patients to show they can afford anti-rejection medications — or dying twin infants receive experimental gene therapy.
In individual cases, medical crowdfunding provides a lifeline for the desperate. But in the aggregate, some critics say it exacerbates disparities in healthcare access.
“Having people go online to ask strangers for help seems like a failure,” said Jeremy Snyder, a bioethicist and professor of health sciences at Simon Fraser University in British Columbia. “Even if you were okay with people having to ask for basic healthcare, doling it out based on who’s the cutest or the most appealing or going viral is a really terrible way of doing it.”
Successful crowd funders “establish credibility, attract donors, and evoke a sense of deservingness,” according to University of Washington Bothell professors Lauren Berliner and Nora Kenworthy.
They tend to be media savvy and have broad social networks. They compose long, uplifting descriptions of their situations, detailing specific needs and achievable outcomes. They set high fundraising goals.
But marketing skills and internet sophistication alone don’t explain their success.
Kenworthy and her colleagues argued in a recent paper that medical crowdfunding is inextricably linked to “dominant social ideas of who is and is not deserving of charity” — ideas “deeply rooted” in racism and sexism. In other words, some people are seen as more deserving of charity than others, and those deemed undeserving are shamed for asking.
Donors also make moral judgments about what conditions merit funding, Snyder says. Conditions linked to perceived individual failings — fairly or not — are often scorned. For example, lung and liver cancer patients are typically less successful than women with breast cancer. The first two are associated with vices — cigarettes and alcohol use, respectively — the other with genetics or bad luck.
Who most often wins the medical crowdfunding lottery, then, is hardly surprising.
Men receive more donations than women, research shows. Young adults do better than seniors. Whites raise more money than people of color; in one study, Black recipients averaged $22 less per donation than whites. People of color (Black women especially) and residents of poorer and rural communities use medical crowdfunding less than whites and those who live in wealthy, more urban neighborhoods.
“If you’re crowdfunding, you’re definitely hurting,” Snyder said. “But even within that, people who are wealthier, whiter, better-educated seem to do better than folks who aren’t.
So it’s just sort of reproducing a lot of racism, forms of bias, stigma associated with different medical diseases.”
Cody Wessel ticks the boxes for crowdfunding success. He’s 36, white, male, and has an art degree, a robust social network and a condition that came about through no fault of his own.
On March 23, the day St. Louis issued a stay-at-home order, Wessel was furloughed from his job in a major retailer’s shipping department, though the company maintained his health insurance. When his store reopened two months later, however, he wasn’t called back. Instead, he received a notice that his health coverage would expire June 30.
For Wessel, this was a real crisis.
Thirteen years ago, Wessel was diagnosed with type 1 diabetes. With insurance, the two types of insulin he needs to live cost him about $80 a month, he says. Without it, $1,500 — an impossible sum. At a minimum, he says, he would have to ration his supplies, over time risking blindness, kidney disease, amputations, even death.
Even so, he says he felt guilty about crowdfunding while millions were unemployed and thousands were marching to protest police brutality. Yet he saw no other option. Missouri had rejected his Medicaid application. He says he couldn’t figure out why.
On July 6, 2020, a week after his insurance expired, his GoFundMe page went live. Through December, with the help of friends’ social media posts and a supportive diabetes community on Twitter, his campaign generated more than $22,000 of his $25,000 goal. Diabetics who saw his story on social media also sent him insulin to tide him over. (In January, using his parents’ address, he enrolled in Illinois’ Medicaid program.)
Michael Kennon, 44, didn’t have such good fortune.
Like Wessel, he’s also white and male, and an artist. He set up a GoFundMe in December 2020 to help pay for his wife Sheila’s insulin and the blood thinner Eliquis. Without health insurance, those two drugs cost about $1,400 a month — which, with a sudden loss of income, they couldn’t afford.
After three weeks, Kennon had raised $125 from three donors.
In February 2020, the Kennons moved from Interlochen, Fla., to Roberta, Ga., population 974, to be closer to Sheila’s family. By July, complications from type 2 diabetes left Sheila, also 44, unable to work. She applied for disability, but the Social Security Administration denied her initial claim, as it does nearly two-thirds of the time.
In November, Kennon’s employer, a retail installation company, laid him off. While Sheila worked on her disability appeal and Kennon searched for jobs, money dried up. Sheila rationed some meds, and, when she ran out of Levemir, she switched to the cheaper ReliOn insulin sold over-the-counter at Walmart, though it didn’t control her diabetes as effectively. Sheila’s doctors helped her apply for Levemir manufacturer Novo Nordisk’s patient-assistance program, Kennon says. But they didn’t hear back and didn’t follow up.
They borrowed money from Sheila’s parents. They weren’t getting food stamps. Their car was in danger of repossession — and since Roberta is 20 miles from anywhere, walking wasn’t an option.
Kennon saw no choice but to ask the internet for help.
But most of his Facebook friends are family members, he says, and he didn’t want to ask them. They already knew he was struggling — and besides, it was embarrassing. So he shared it with everyone else.
“I got an immediate response from one of my friends from high school that I haven’t talked to in 24 years,” Kennon said. “So that was cool.”
About half of Americans get their health insurance from their employer, according to KFF. Many economists find this system problematic.
In a healthy job market, it tethers people to positions they might otherwise leave, says Vasilios D. Kosteas, an economics professor at Cleveland State University. In an economic crash, it puts millions of workers at risk of losing access to healthcare.
Wessel was one of the 6 million people that the Economic Policy Institute estimates lost employer-sponsored coverage from March to August 2020, as COVID-19 made its way around the country.
In its first decade, the Affordable Care Act didn’t decouple health insurance from employment, but it did reduce the uninsured rate by expanding Medicaid and subsidizing premiums, Kosteas says. While newly available subsidies inured low-income customers from rising premiums, they were no help to those who made too much to qualify for government assistance.
As a result, many unsubsidized consumers who felt priced out of ACA marketplaces fled to cheaper, less regulated waters.
Sarah Winston was one of them.
A self-employed marketing contractor, Winston says she made too much to qualify for subsidies on the Minnesota Cares exchange. In November 2018, she purchased a “short-term” plan, which has lower premiums but doesn’t have to abide by ACA coverage standards. A year later, she and her three children joined the 38,000-member healthcare-sharing ministry Alliance for Shared Health.
Healthcare-sharing ministries, which originated in the 1990s, operate as faith-based co-ops, holding down expenses by declining to cover medical expenses associated with, for example, drug or alcohol use.
Winston says she paid $426 a month for her family’s coverage. She admits she never read the fine print — which wasn’t that fine.
Winston’s membership card says the sharing community “does not engage in the business of insurance.” The list of covered bills in the member guidelines omits anything that takes place in a hospital.
“The blame’s on me,” Winston said. “It’s embarrassing. I’m educated and smart. How does this even happen?”
She says she doesn’t know the answer to her own question.
But when Ella went to the hospital, Winston would have been better off with no health plan at all.
Through the CARES Act, the government reimburses healthcare providers for treating uninsured COVID patients. But the U.S. Department of Health and Human Services doesn’t consider members of healthcare-sharing ministries “uninsured,” according to the American Hospital Association.
Winston fell into a loophole: Legally, her family didn’t have “insurance." But they also weren’t “uninsured.” So Winston was on the hook.
In a statement, Children’s Minnesota said it has “financial counselors who are always available to work with families regarding hospital and clinic services.”
Winston’s situation “breaks my heart,” said Alliance for Shared Health president Mike Hentges. He said ASH wants every member “to have solid knowledge of what they’re enrolling into before they enroll.”
Most ASH members find the ministry through insurance agents who offer ASH among their products, Hentges says. But those agents are told not to call the ministry “insurance” or suggest it covers catastrophic care.
ASH has only received a few complaints, he says.
In a statement, Katy Talento, executive director of the trade organization The Alliance of Health Care Sharing Ministries, pointed out that ASH is not an AHCSM member.
“Some have alleged that it does not meet the legal definition of a healthcare sharing ministry,” Talento added, though she did not elaborate or immediately respond to a request for more information.
“COVID-19 treatment is eligible for sharing under the guidelines for all the Alliance member ministries,” Talento said. “They have facilitated the sharing of millions of dollars in bills for COVID-19 treatment and will continue to do so.”
Jen Gordon Rasmussen, Winston’s friend, had never crowdfunded before, and she had no idea what to expect. She set a $5,000 goal and worried it was too high.
The GoFundMe page met it in 12 hours, and the donations kept coming.
It helped that Ella was a member of the Minneapolis area’s tight-knit dance community. There weren’t a lot of $1,000 contributions, Rasmussen says, but $5 and $10 from teenagers who knew Ella through competitions. A dance studio owner sold bracelets and donated the proceeds. Dance team boosters from high schools throughout the region collected funds for the cause.
It helped, too, that Ella’s unusually grave condition attracted the attention of the local media, though Winston says she never brought up the GoFundMe campaign in interviews.
By the end of November, the campaign had raised $135,000 from more than 2,100 donors. It won’t completely cover the hospital bill, currently more than $150,000 and rising, Winston says. Nor will it pay for the post-hospitalization costs — EKGs, echocardiograms, cardiologist appointments — that continue to mount. But it will help avert financial disaster.
“You’re a good person,” Winston said she told Ella. “When you give good to the world, the good comes back to you.”
The world deemed Ella deserving of help. The world — at least the world of GoFundMe — hasn’t done the same for Michael Kennon.
Since launching their campaign, the Kennons were approved for food stamps, and Michael recently found a job in a hardware store. They still don’t have insurance, though he hopes to go full-time and get health benefits soon. Sheila hasn’t finished her disability appeal, either, but that, too, is on the horizon.
Things could be worse, Kennon says. Even if he didn’t hit the GoFundMe jackpot.
“I consider myself a good person,” Kennon said. “Other people like me, you know? But that doesn’t necessarily make for the best crowd funder.”
Jeffrey Billman is an award-winning investigative journalist based in North Carolina.
Don’t despair. There’s help for you: assistance with copays, deductibles and other expenses.
Coalition building. Raising awareness. Encouraging innovation. Changing perceptions and policy. Making medicines affordable.
Clear-cut ideas and solutions. The science, economics and policy of affordability and innovation.