Families turn to crowdfunding for medical help
EUGENE, Ore. — On Dec. 1, 2015, Jasmine Gevatosky had eight fuzzy, gray spots in her eyes, the result of a devastating, rare illness that causes little strokes in her retina. Her vision was deteriorating.
But on that day, as she typed at her computer, it wasn’t the spots that obstructed her vision, it was tears that fell freely while she wrote the plea for money to Facebook friends — and strangers. She was seeking $40,000 for a treatment that would save her vision but that her insurance refused to cover.
Words spilled out as she typed her story on the popular crowdfunding site GoFundMe, in the hope that strangers would provide her with what the health care system did not.
“I remember rereading it over and over, making sure like, am I really going to do this?” she told the Register-Guard newspaper. “Do I really want everyone to know that there’s something wrong with me?”
Gevatosky, 27, of Eugene has Susac’s syndrome, a rare autoimmune disease that affects about one in 1 million people, according to neuro-ophthalmologist Robert Egan.
Within a week, she had raised nearly $10,000. Her campaign has been shared more than 900 times on Facebook. But she soon discovered, after the initial response, that she was in competition with tens of thousands of other patients who were seeking donations.
Raising funds to pay for medical costs when health care falls short is by far the No. 1 reason people turn to crowdfunding sites such as GoFundMe, according to a 2016 study by NerdWallet, an online financial analysis service.
Molly Fink of Eugene is among them. Her husband, Tim, posted a video update early this month titled “Molly’s Miracle.” It featured Molly, 50, dancing around her kitchen, throwing snowballs, smiling and laughing. But the clip also struck a more solemn tone.
Molly Fink suffered severe brain injuries in two bicycle accidents — one when she was struck by a pickup truck at age 8, and the second in May, when she and her husband were riding bikes side-by-side and their front tires bumped.
She was flung onto the sidewalk, and she landed on the same side where she had suffered a similar head injury as a child.
After the more recent accident, she suffered extensive bleeding of the brain called a subdural hematoma. After two brain surgeries and three months of hospital recovery, with several months to go, Molly and Tim Fink find themselves facing a common crisis: They don’t have insurance to cover the costs.
“If I could go back to May 3, and if I would’ve known this was coming, I would have starved myself to buy insurance,” Tim Fink said.
A national trend
In a year when legislative battles over health care dominate the news and town hall meetings, crowdfunding websites such as GoFundMe and YouCaring have emerged as powerful resources of last resort.
“The general public is embracing the technology and using it in a way that benefits other people, and it’s really a beautiful thing,” said Courtney Munther, an instructor at the University of Oregon who teaches a course on crowdfunding.
Medical expense campaigns make up the bulk of online crowdfunding.
The NerdWallet study also found that since its 2010 launch, GoFundMe has raised $930 million for medical expenses — a large portion of the $2 billion that the industry leader has raised overall. Of that money, GoFundMe keeps up to 5 percent of the donations in exchange for administering the site. An additional 2.9 percent is charged for payment processing.
But while GoFundMe often does help in hopeless situations, the study also found that one in 10 online crowdfunding campaigns do not reach their goal.
Munther said the wording of the initial GoFundMe request-for-help story is crucial.
“One of the reasons that medical issue crowdfunding works so well is because you have a clear need for something,” Munther said. “The second thing you need is urgency, and so often in medical situations, the need is urgent.”
Asking for help often is the most difficult task for people who already are facing a medical and financial crisis. It was the reason for Gevatosky’s tears.
“Hi, my name is Jasmine, and I am 26 years old,” Gevatosky wrote under the “story” section on her GoFundMe account. “On April 10th, my life took a drastic change when I hit my head at work. I am losing my vision.”
The 900-word essay was accompanied by photos of Gevatosky holding birthday cakes she had decorated for her nieces and nephews, and photos of her graduating college.
“When I sat and wrote that, I was thinking, if I go blind, this is what I’m going to miss and these are the things that I value about my life,” Gevatosky said.
According to Egan, Gevatosky has a retinal form of the syndrome that puts her in danger of losing portions of her vision because of tiny strokes flaring off in her eyes. In order to keep the strokes — which can result in tiny gray spots — at bay, she needed an infusion treatment called IVIG.
But Gevatosky’s insurance wouldn’t cover IVIG — which costs about $42,000 per infusion — because it wasn’t recognized as a known treatment for her condition. As rejection letters from UnitedHealthcare came piling in, more spots were popping up in her eyes.
“The sad part is, I pay health care,” Gevatosky said. “I’ve had health insurance ever since I was 15 and started working. And the one time I need it, I can’t even use it.”
While Gevatosky had a one in a million chance of contracting her disease, Molly Fink had about the same odds of surviving and retaining all her mental faculties after her accident in May, her family said.
“They literally told us that they didn’t think she was going to make it, and if she did make it, they pretty much wrote off any cognitive abilities,” Tim Fink said. “And now, she remembers names of fourth-grade teachers; she remembers our exact wedding date; she remembers our kids and grandkids.”
For Molly Fink, even a relatively mild trauma to the right side of her brain was life-threatening. She had a metal plate taking up about one third of her skull, a remnant of the childhood bike accident.
After her crash in May, she was unconscious in the intensive care unit and her family had difficult discussions about letting her go. But then she started to show signs of improvement.
Molly Fink’s family said she still has a long road to recovery. A stroke on the right side of her brain caused partial paralysis on her left side. She still is regaining her voice after a tracheal tube was inserted into her throat in the ICU, and her brain needs to remember how to swallow again, so she eats through a feeding tube.
Molly Fink, who is recovering at an in-home care facility in Eugene, will need several months of physical therapy and a surgery to reconstruct the right side of her skull.
Tim Fink already has received hospital bills in the mail. A GoFundMe campaign is a lifeline, he said. But having reached only about $6,700 of his $500,000 goal, it’s no substitute for health care.
After nearly a yearlong battle, Egan was able to convince Gevatosky’s insurance company of the effectiveness of IVIG for treatment. With coverage, her infusions cost about $1,500 a month.
But after being active for 2 1/2 years, Gevatosky’s GoFundMe campaign still hasn’t reached half of her goal of $40,000. She said the success of her crowdfunding was directly related to her number of friends on social media.
“I’m social, but I never cared about the followers,” Gevatosky said. “I just had a couple friends and family on Facebook, so it’s like people who even have less than that, or don’t have families, are kind of screwed.”
Tim Fink said he has come to realize that he can’t rely on the crowd-funding site.
“It’s kind of like fishing,” he said. “When you throw out the net, you’re going to yield whatever is in that net. I can see it’s gotten probably 14,000 views by now, but yet I’ve only had 200 donors.”
Gevatosky said she depleted the funds in her GoFundMe after a few months of treatment. And even though she hopes for more, just being able to share her story — and the many people who did donate to help a stranger — has helped a great deal.
“You feel less singled out,” Gevatosky said. “Even people who I wasn’t friends with would say oh, I knew someone who had this or this, and you just don’t feel as by yourself and diseased.”