Column: That heartwarming story about a kid crowdfunding for his infant brother defines what’s wrong with U.S. healthcare
Last week, MSNBC picked up a local medical story out of South Carolina and helped turn it into a nationwide sensation.
“We want to send you off with a smile,” declared the anchor, Craig Melvin. He then introduced the story of 9-year-old Andrew Emery, who opened a lemonade stand in his hometown and raised $6,000 in two hours to help fund the care of his 6-month-old brother Dylan, who has been diagnosed with an incurable genetic condition known as Krabbe disease.
The Emerys’ story plainly has touched many hearts, as perhaps it should. A GoFundMe page to crowdfund for the family says they have raised $33,481 of their $40,000 goal in the last 15 days. CBS News has done a report, and ABC’s “Good Morning America” has been in touch.
The rise of medical crowdfunding should be viewed as ethically problematic.
— Bioethicist Jeremy Snyder
The lengths to which the family has gone to raise the funds — including the GoFundMe appeal, a related Facebook page and the public reportage of Andrew’s lemonade stand and the family’s medical needs — should shame America. But not because so many of us haven’t contributed to their cause. What’s shameful is the need of families in positions like the Emerys’ to turn to public fundraising for expenses that should be covered by public funds.
We’ve reported before on the drawbacks of relying for medical needs on public appeals for help. The Emery case places them again in sharp relief. This isn’t to suggest that the family has done anything wrong, or that the more than 500 donors who have contributed to their campaign should have held on to their money.
Rather, it’s to point out that public crowdfunding is the most inefficient and systematically unjust means of distributing resources for healthcare. It perpetuates the worst aspects of the American healthcare system and reduces pressure on lawmakers to fix them.
South Carolina, the home state of the Emery family, is a case in point: The local community is proud of having come together to help the family in its time of need. But over in Columbia, the state capital, Republican lawmakers have steadfastly refused to expand Medicaid under the Affordable Care Act. That has left as many as 447,000 state residents without access to medical care. Over the next 10 years, the state will be giving up about $15.8 billion in federal funding because of its refusal to expand Medicaid.
What should make South Carolinians prouder? That they’ve raised a few thousand dollars for a single family, or left 447,000 of their fellow residents without adequate care?
The broad ethical and moral issues raised by crowdfunding are manifest. As the Canadian bioethicist Jeremy Snyder observed in 2016, crowdfunding campaigns encourage the distribution of healthcare resources “on the basis of personal appeal, media connections, and online-marketing savvy rather than the individuals’ level or degree of need.” Meanwhile, people who are “socially marginalized or have medical needs that are stigmatized,” such as mental health or addiction problems, are likely to be left further behind in getting their needs fulfilled.
Not to place too fine a point on it, Andrew Emery is telegenic and white, with a story that lends itself to sending TV viewers “off with a smile”; the victim in his family is a newborn suffering blamelessly from an implacable medical condition. Does anyone really think that an African American adult with a history of drug abuse or mental illness would have the same broad appeal?
It’s conceivable that even with a properly functioning healthcare system, the Emery family might need to turn to friends, neighbors and strangers to help with some of the expenses of caring for Dylan. In countries with universal healthcare, such as Canada, some residents still turn to crowdfunding for treatments that aren’t covered by the national system or non-medical expenses, including the need to travel long distances to treatment centers or give up work hours to manage a family member’s condition. At least some of the expenses incurred by Andrew’s parents evidently fall into this category.
But we shouldn’t allow the success of this one crowdfunding effort obscure the underlying problems in healthcare. “The rise of medical crowdfunding should be viewed as ethically problematic,” Snyder wrote. “Policy-makers should treat these campaigns as indicators of health system shortcomings that should be addressed in order to counter growing health inequities.” If that happens — and we’re a long way from achieving it — Andrew Emery’s campaign might end up helping more families than his own.
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