What the rise of crowdfunded medical care means for health reporters

The stories are heart-wrenching.

Among the more than 50,000 medical expense fundraising campaigns currently on YouCaring, an online crowdfunding site, are accounts of a young female shooting victim with an injured face and jaw. A toddler with a brain tumor. And a Yosemite climber who fell over 100 feet and now faces “a severe spinal injury.”

“People have very real needs,” said Maly Ly, chief marketing officer for San Francisco-based YouCaring, an online crowdfunding site. “We are usually the only solution they can turn to.”

Despite the Affordable Care Act’s expansion of insurance coverage, fundraisers for medical expenses are the site’s largest and fastest growing category, according to the company’s third quarter report. While YouCaring did not provide exact figures, the company said medical expenses are “a big percentage” of the $1 billion it has raised since launching in 2011. Medical campaigns made up about 50 percent of YouCaring fundraisers before it acquired GiveForward earlier this year, where medical fundraisers made up 70 percent of the site’s campaigns, according to a Bloomberg report.

These companies are not alone. Media outlets have reported that almost half of the $2 billion in funds raised by the crowdfunding site GoFundMe between 2010 and early 2016 — or $930 million — went to medical-related campaigns.    

"Everyone who is crowdfunding is disadvantaged, but those who are relatively advantaged are more likely to be winners." —  Jeremy Snyder, Simon Fraser University

Along with offering a source of compelling personal stories, these campaigns can give health journalists important insights into gaps in current health coverage. But journalists would be wise to keep in mind some caveats as well, said Jeremy Snyder, a health sciences professor at Simon Fraser University who has written extensively and critically on the topic of crowdfunding health care.

While mining for stories, keep a skeptical eye

One reason for the recent growth in medical fundraising is the large out-of-pocket costs people on high-deductible health plans must pay, YouCaring’s Ly said. And there’s also the exorbitant costs that accompany serious illness or injury, such as the need for transportation to treatment centers far from home, childcare, and lost wages, she said. 

The types of health-related campaigns growing the most offer useful insights into the biggest gaps in insurance coverage.

YouCaring recently reported a 36.5 percent increase in fertility treatment fundraisers, and a 78 percent increase in campaigns addressing gender reassignment and transition. The company declined to give the absolute numbers behind those percentage increases, but a quick search offers a point-in-time snapshot for the latter: About 30 fundraisers appear when “fertility treatment” is searched in YouCaring’s medical category and about 30 fundraisers appear when “gender reassignment” is searched, also in the medical category.

Crowdfunding sites don’t task themselves with weeding out emerging medical treatments that aren’t evidence-based, something Professor Snyder says can pose problems. He’s currently looking into crowdfunding for non-evidence based stem cell treatments. People’s crowdsourcing pages for such treatments often echo marketing claims about these treatments’ efficacy, essentially creating high-impact marketing for some questionable treatments. 

“Through crowdfunding, they’re spreading the gospel to their friends and families,” Snyder said.

Crowdfunding perpetuates some disparities

Snyder is also concerned about the disparities in successful fundraising campaigns. People who have big social networks and those who know how to write a compelling story will likely raise the most money.

For example, a photogenic child is more likely to pull at the heart — and purse strings — than a recovering alcoholic with liver disease, he said. And many medical campaigns don’t take off: NerdWallet reported that, on average, of just one in 10 medical-related crowdfunding campaigns reach their target goal in a 2016 piece.  

“This is really driven by appeal,” Snyder said. “Everyone who is crowdfunding is disadvantaged, but those who are relatively advantaged are more likely to be winners.”

YouCaring’s Ly acknowledges that certain types of campaigns are more likely to go viral, such as those with a sense of urgency or high impact (imagine a disabled child who needs a treatment to walk). She’s also found that the most successful fundraisers keep working at the campaign, posting frequent updates that allow friends and family to feel more engaged in the unfolding story.

Privacy, fraud and coverage gaps

Snyder, the health sciences professor, also worries about privacy since people are often sharing rather personal medical information with large audiences. While all sharing is voluntary, he questions how truly voluntary such choices are when one is faced with suffering, bankruptcy or even death.  

Then there’s the issue of fraudulent campaigns, something platforms such as YouCaring say they’re able to monitor through “very robust technology and security infrastructure.” But such efforts aren’t universally fail-proof, as scams such as the mom who faked their child’s cancer diagnosis to raise money on GoFundMe remind us.

On a broader level, the fact that people are increasingly turning to online crowdfunding sites to pay for their medical costs reveals some real shortfalls in the health care system. These sites provide a bandage instead of a cure, Snyder added. That broader context is something reporters should keep in mind when covering such campaigns. It’s also worth exploring whether such sites have a financial impact on other forms of charitable giving, as people are increasingly likely to personalize their gifts in the era of social media.

For now, health care crowdfunding seems poised for continued growth. In fact, a 2016 PEW Research Center report found just 22 percent of American adults have contributed to an online crowdsourced fundraiser — that suggests there’s a lot more audience yet to discover these campaigns.

Ly says her company anticipates more growth as more people become aware of crowdfunding as a solution. She’s says crowdfunding sites don’t see themselves as a replacement for gaps in the system. Instead, she offers the analogy of villagers pitching in to help neighbors.

“What we are is a technology that lets people get the help they traditionally got from their friends, families and communities,” she said. “Really, they are turning to the power of their community.”

[Photo by Michael Nukular via Flickr.]