By Alison Brimley | [email protected]

Whether you’re sitting around your family dinner table or standing on a presidential debate stage, solutions to the high cost of health care are a surefire source of controversy. For people all over the country, one option has become a go-to when facing a diagnosis they know will ravage them financially: GoFundMe. 

Chemotherapy, an intensive care stay for a premature baby, an organ transplant — all of these lifesaving treatments, which can come with astronomical price tags, are things that have inspired locals to create GoFundMe campaigns almost as soon as they receive diagnoses.

GoFundMe allows people to start online fundraisers for all kinds of causes. But currently, one-third of all the money raised on the platform is dedicated to medical expenses. In 2018, Americans raised $650 million for health care costs on the site. The same year, GoFundMe announced they would no longer take a percentage of donations as a platform fee (though a processing fee is still applied to credit card transactions). 

Unsure about insurance

One might guess that those who are forced to turn to crowdfunding — seeking small donations from many donors—for medical bills lack insurance. But many are insured. Danny Duke of West Jordan had a full-time job with benefits when he was diagnosed with acute myeloid leukemia in April 2018. Danny was the sole income earner in the household and was “very blessed,” his wife Kelly said, to be able to continue working remotely even while undergoing treatment. 

Still, Kelly says, they had to go to a hospital outside their network, and working with their insurance company has been a “nightmare.” Months after treatment, the Dukes are just starting to get some of their heftier bills. Recently they received a bill for $460,000. That’s not the cost before insurance kicks in. That’s the amount the Dukes are responsible to pay. 

Using GoFundMe and other sources, they were able to raise about $14,000 from donations of family, friends, and a few strangers. It was more than expected, but nowhere near what they needed. 

And even for families who end up with more modest bills, the cost can be a hardship. When Trisha Fullmer’s son Simon was diagnosed with stage 4 high risk neuroblastoma in 2017, at the age of 4, her sister-in-law quickly started a crowdfunding campaign for them. (The Fullmers’ fundraiser was started on YouCaring, which was acquired by GoFundMe in 2018.) Though they were fortunate to have good insurance, they still ended up with bills totaling about $12,000 in the first year. 

At the time, Trisha was working to put her husband through school. Simon is now declared “NED” (“no evidence of disease”). However, he continues to require frequent hospital visits, including scans every three months. They hit their deductible every year in January, Trisha said.

Constant bills are also a reality for Jessica Finn, whose son was born prematurely in October 2015. After a 97-day stay in the NICU, he came home but continued to have more problems, including heart failure, that required additional hospitalization. Finn’s sister started the fundraiser for her. 

Then, she “paid it forward” by starting a GoFundMe campaign for friends Kristal and Jacob Rudy, when their son Kayden was born with hypoplastic left heart syndrome. Finn said, “I started the GoFundMe in hopes that it would help [them] like it did us. We would have literally been in a terrible place financially, and I wanted to help her not have that same problem.”

Cache Finn, 4, with his parents Tyler and Jessica Finn. Cache was born prematurely in 2015 and his family relied on donations made through GoFundMe. (Photo courtesy Jessica Finn)

  

Kayden required open-heart surgeries and eventually a heart transplant in July 2018 at 10 months old. The Rudys drained their savings in the first few months of Kayden’s life, spending $6,000 on medical bills. 

Kayden is 2 now. “We are still paying for his medical bills, as they never stop,” Kristal said. “We have paid over $10,000 in medical bills and still have bills coming in.”

For others, the desired treatment plan falls outside the realm of what insurers will cover. Tawny Swensen of West Jordan collaborated with her brother Gary Booth to start a GoFundMe campaign for their sister LeJawn, who was diagnosed with Stage 3 cervical cancer in 2018. LeJawn was recently married and hoped to have children someday. Since chemotherapy and radiation would likely prevent that, she sought alternative treatments not covered by insurance. Tawny and Gary turned to GoFundMe to raise the money needed for the treatments LeJawn wanted to try. They set their goal at $25,000. 

Unfortunately, the alternative medicines did not have the desired effects for LeJawn. About a year after being diagnosed, she decided to proceed with chemo and radiation, which will surely bring additional bills.

The hidden costs of illness

Even in countries with universal health care, GoFundMe still has a strong presence. Why? Because a life-threatening diagnosis often requires increased spending in other categories. Sometimes it increases food and travel costs. Sometimes it requires patients or caregivers to quit their jobs. Leaving hospital and doctor bills out of it altogether, being sick can be expensive.

When Danny Duke’s chemotherapy ended, it was important for him to go home to a squeaky-clean atmosphere. Since their home had once been a rental, the doctors said he would be able to go home sooner if the Dukes replaced the flooring. 

So, they tore up the dirty carpet and replaced it with laminate. They minimized the cost by choosing cheap material, and friends and family installed it. Still, this set them back about $4,000; a substantial chunk of the money they received through GoFundMe. That money was used well, Kelly said, because it spared them further costs from expensive hospital stays. 

Basic living expenses also seem to skyrocket when you’re living on an unpredictable schedule. For the Fullmers and Rudys, costs related to their children’s care added up to create a financial burden. Long drives to Primary Children’s required extra gas money, and weeks spent at the hospital required them to eat out frequently. Even during weeks they expected to be at home and filled their fridge with groceries, Trisha Fullmer said, something would often send them back to the hospital and the food would go to waste. 

Sharing stories

Most people have no idea upfront how much their treatment will cost. Often, a fundraiser’s goal amount is a total guess set by the organizer simply as a starting point. But part of GoFundMe’s appeal is its immediacy. In contrast to the health care and insurance machines, where real costs take months to reveal themselves, GoFundMe me lets anyone hop online, fill out some information and start collecting donations from family and friends right away. 

Kelly Duke likes that GoFundMe allows people in need to tell their story in a way that can “hit on [people’s] emotions.” But the flipside of this is that for fundraisers that don’t generate an emotional response — at least not from the right people — the needed money may not come in. And while hospital bills and insurance companies deal in dollar amounts and codes, with no regard to the individual or their story, GoFundMe is all about the individual and the story.

GoFundMe resembles a social media platform. You can follow campaigns, see messages from others who have donated and scroll through a feed listing the amount that others donated (though there is an option to donate anonymously). Organizers can write updates and post photos to keep followers posted on a patient’s progress. Many have blogs, Instagram accounts and Facebook groups associated with their fundraisers. 

When she heard of her sister’s plan to try alternative treatments, Tawny Swensen wanted to be supportive but was wary of being taken advantage of. She and her brother traveled to California to visit the company producing the medications and to ensure that everything seemed above-board. They wanted to verify that the treatment was legitimate, not only to help their sister, but to be accountable to the donors they were trying to reach. 

So, their GoFundMe account became more than a fundraiser to help LeJawn pay for her treatment. It became a documentation of their journey. They were hopeful the treatment would work and that the story they’d written, using GoFundMe, would be a source of hope for others wanting to avoid chemotherapy and radiation. 

But the social aspect of fundraising can also make some uncomfortable. At first, Kelly Duke worried people would think she was “begging for money.” Friends encouraged her to create a fundraiser anyway. She promoted it on Facebook and Twitter and got an initial slew of donations. Later, when Danny Duke needed a stem cell transplant, they reopened the fundraiser and got the money they needed to pay for a donor, his brother, to travel to Utah. 

Trisha Fullmer estimates that of the donations they received, two-thirds came from people they knew, while one third came from strangers who had found their fundraiser online. In some ways, she said, it is more comfortable to receive donations from strangers. “With friends, you know their financial situation,” she said. “You know when they really can’t afford it.” 

The limits of giving

Tawny Swensen has been blown away by the generosity of donors, both friends and strangers. To date, their fundraiser “Save Our Sister LeJawn” has raised over $10,000. And Swensen is confident that if they had to do another push, they would see a response. 

Without GoFundMe, they would have found another way. Swensen remembers thinking, “If I have to mortgage my house, I have to mortgage my house.” Other family members would have sold things to get LeJawn help. They feel very lucky that it hasn’t come to that. 

But even incredible generosity doesn’t usually completely cover a bill. Many medical expenses won’t get covered unless a fundraiser goes viral. Certainly, some do: Some of the most high-profile fundraisers have collected millions of dollars. 

“I do see accounts that are highly successful,” Kristal Rudy said. “But those are the ones that the news shines a light on.” And while she is grateful for each donation her family received via GoFundMe, she says, overall, she wouldn’t call theirs a successful campaign. They raised just over $2,000. 

Most who turn to GoFundMe, like the Dukes, soon hit the limit of what acquaintances can give. For them, medical bankruptcy becomes the only option. “I’ve asked all my friends,” Kelly Duke said. “I don’t want to keep asking.”