Covering crowdsourced medical bills: Don’t skip these important questions

Joanne Kenen

About Joanne Kenen

Joanne Kenen, (@JoanneKenen) the health editor at Politico, is AHCJ’s topic leader on health reform and curates related material at healthjournalism.org. She welcomes questions and suggestions on health reform resources and tip sheets at joanne@healthjournalism.org. Follow her on Facebook.

You’ve all seen the GoFundMe and other crowdsourcing campaigns for health care, on social media or elsewhere. They are probably even more common than you realize. A study from the NORC at the University of Chicago found that about about 50 million people – one in five U.S. adults – have reported donating to some type of campaign to raise money for a medical bill or treatment.

That same survey found that about 8 million Americans had started a campaign for themselves or someone in their household. More than 12 million Americans had started a campaign for someone else. And about a third of the donations are to strangers. Millions and millions of dollars are raised.

These fundraisers are an obvious testament to the affordability crisis in American health care. Even insured people can face unmanageable deductibles and out-of-pocket expenses. Sometimes, these campaigns show the lengths desperate people may go to pursue treatment that may be even less than a long shot. (Coverage decisions can be evidence based, not always money based.) Sometimes seriously ill people, or their relatives, are being beguiled by the hope of a treatment that’s outright fraud.

The Hastings Center recently addressed steps that would ban crowdsourcing for unproven treatments, such as some stem cell treatments. (Some of the platforms have banned anti-vaccination campaigns but do not block or vet other questionable health fundraisers.) The authors of the Hastings report recognize that social media and crowd sourcing platforms can’t evaluate all the science themselves, so they propose they allow campaigns only for treatments that are regulated or have the go ahead from the FDA for expanded access (sometimes known as compassionate use.) The full Hastings report is behind a paywall; the Verge wrote about it here.

There have been several articles over the last few years also looking at the whole crowdfunding phenomenon (good and bad.) This 2018 Mother Jones story by Stephen Marche called “Go Fund Yourself” looked at how crowdsourcing might actually widen, not close, health disparities. Last fall the New Yorker wrote about how the “winners” of the crowdfunding health contests were those who could make themselves sound the most appealing yet neediest. Bloomberg – back when the Trump administration was trying to repeal the ACA – wrote about how crowdsourcing had become an industry unto itself.

So if you do write about a campaign in your community, do a gut check first. Is this a story that says something about money and medicine and what’s broken and inequitable in our system? Or is the story about vulnerable and desperate patients and families being taken for a ride? Is it about profit? And is it about good medicine?

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