It should be obvious as a fundamental principle that in a civilized country, crowdfunding for direct medical expenses should be utterly unnecessary. You get sick or injured, your medical care should be covered by the community at large.
Yet public appeals by families or individuals for help paying basic medical bills seem to be on the rise in the United States. Crowdfunding websites such as GoFundMe.com report that medical expenses rank as their largest single category of appeals; other sites such as HelpHopeLive have sprung up specifically for medical expense appeals.
A quick trot through current appeals on GoFundMe reveals campaigns for a network sports cameraman experiencing an unspecified “very serious health issue,” a California toddler with “a fatal, progressive, neurodegenerative storage disorder,” a 33-year-old rugby player with chronic heart problems and a young man, “one of the most caring and loving individuals that you will ever meet,” who suffered brain and physical complications from a cardiac arrest.
No one can say that these people aren’t deserving, but one can say that their stories point to a crisis in the American healthcare system in two ways, neither of which is solved by crowdfunding. (We’re not linking to the campaigns because we can’t vouch for their validity.)
One involves the gaps and other problems with U.S. healthcare that make crowdfunding campaigns necessary in the first place. Lawmakers who support policies that drive people to expose their personal lives in order to obtain desperately needed care should be ashamed of themselves. (We’re looking at you, congressional Republicans.)
“This way of raising money addresses only the symptoms of these problems,” observes Jeremy Snyder of Simon Fraser University in British Columbia. “If the popularity of medical crowdfunding shifts attention away from these problems … then crowdfunding could delay or prevent reforms that would benefit the vast majority of people.” In other words, beware of the impression that crowdfunding can be a substitute for broad healthcare reform.
The idea that appeals for individual assistance can supplant solid public programs is cherished by American conservatives. In 2014, Michael Cannon of the Cato Institute listed reliance on “friends, family, or the kindness of strangers” as a possible alternative to the Affordable Care Act. A similar notion was at the core of President George H.W. Bush’s “thousand points of light” doctrine, which was aimed at paring federal responsibility for the needy. None of these options can muster the resources to replace government programs, crowdfunding least of all.
The other crisis underscored by the rise of crowdfunding concerns the ethical issues raised by public appeals for medical care itself. Those are addressed in a new article in the Journal of the American Medical Assn. by Michael Young and Ethan Scheinberg of Harvard Medical School. Medical crowdfunding, they write, “raises a constellation of ethical and legal hurdles for patients, clinicians, institutions, and society.”
Not all crowdfunding needs could be eradicated by universal healthcare. Even Canada, which has a well-developed single-payer system, has seen a rise in crowdfunding appeals for treatments that aren’t covered by the government system or costs that aren’t strictly medical — the need to take up temporary residence near a treatment center, for example. A medical crisis can destroy a family’s financial stability in countless ways that aren’t addressed by a national safety net, including the loss of a paycheck when a breadwinner is unable to work.
But crowdfunding for expenses that should be met by private insurers or government healthcare programs are different, in part because they can make the delivery of healthcare fundamentally unfair. They can direct resources away from patients who need them the most toward those whose campaigns are merely “more vocal, photogenic, or emotionally appealing,” Young and Scheinberg observe. They can favor those who already are advantaged with “the means to engage with online tools and tap into large social networks.”
And they can encourage campaigners to exaggerate the neediness, the medical condition or the personal qualities of the subject. “Medical resources for crowdfunding campaigns are largely distributed according to personal appeal, sensationalism, one’s social position, or luck,” Snyder says. That’s not even to mention the potential for fraud in campaigns, either those with an imaginary victim or those with real victims, from whom donations are diverted. (Crowdfunding websites typically keep 5% of donations, plus fees for credit card processing and other services.)
Socially marginalized groups — Snyder lists immigrants, people with mental health problems and the poor, for starters — already often are excluded from medical treatment. Reliance on crowdfunding only magnifies their disadvantages. “Socially stigmatized illnesses” such as substance addiction are less likely to form the basis of a successful campaign than cancer or the consequences of an accident. Children, young athletes and others with inspiring life stories do relatively well; the campaign for the California child mentioned above, featuring charming photos of the toddler with her older sister, raised more than $65,000 in a month.
Crowdfunding campaigns typically require their subjects to reveal personal information that should be kept confidential in a well-functioning healthcare system. Donors expect at least some details about the patient’s medical condition, and it helps to provide a window into the individual’s or family’s economic crisis. Regular medical updates also are expected, which can prompt sponsors to underplay progress out of fear that contributions will dry up if donors feel their money no longer is needed.
The desire for medical information puts doctors on the spot because sponsors often want to enlist them in the appeal, Young and Scheinberg report. But their legal and professional obligations are murky. Should they participate in exposing their patients’ medical data? Should they — and legally, can they — speak out if sponsors are issuing misleading or deceptive medical updates?
None of these issues has been adequately addressed by society, not to mention lawmakers, as medical crowdfunding has taken off. But one thing should be clear: The need of some patients to make public appeals for help from strangers just to pay their medical bills is a shameful development and a reproach to an American healthcare system that our current Congress and White House seem determined to make worse.