If you follow the news or your social media feed, you know that crowdsourcing medical expenses is increasingly popular for financing health care costs. In fact, you might have contributed to one; 22 percent of American adults report donating to GoFundMe medical campaigns. As of 2021, approximately $650 million, or about one-third of all funds raised by GoFundMe, went to medical campaigns. That staggering amount of money highlights how dysfunctional our health care system is, forcing people to resort to crowdsourcing to afford their medical care — but it’s not surprising. In the United States, 62 percent of bankruptcies are related to medical costs. This should be a wake-up call to address and reform the system further.
In shifting the responsibility to crowdsourcing and social media platforms, the U.S. medical system continues to fail many of its neediest patients. Despite the Affordable Care Act, many patients remain uninsured or have high-deductible plans that leave them insured in name only. In a recent study of the impact of GoFundMe campaigns on dermatologic conditions — including skin cancers, alopecia and chronic autoimmune diseases such as lupus and scleroderma — our team at the University of Pennsylvania, along with colleagues from the University of Virginia, found that the top reason people resort to GoFundMe is inadequate health insurance. We also found that those most likely to succeed are the most privileged and connected: young white men. This means that this supposedly democratic fundraising strategy may paradoxically worsen disparities, instead of giving people with the greatest need more access.
Further, the platform implicitly pressures people to be public about their most private medical information, since the more they share, the more money they are likely to collect, as our study revealed. In fact, the campaigns that were the most successful were the ones with frequent and detailed updates about the person’s medical condition. For every additional campaign profile update, fundraisers earned $232 more per post, on average, and for every additional share on social media, fundraisers earned $6 more per post when controlling for race, age, gender and goal of campaign.
Other studies on GoFundMe success in patients with hepatitis C and lung cancer have shown that successful campaigns featured motifs emphasizing self-sufficiency, use of the platform as a last resort, framing the request for help as atypical, and suggesting that the individual was not at fault for their illness (e.g., stating that their hepatitis C was not from intravenous drug use).
What’s the solution? Some might argue that with the failures of the current health care system, we need stop-gap innovations like GoFundMe to allow people to find ways to fund themselves. But there must be a way to innovate while not disadvantaging the people who need it most — and there must be a way to ask for extra help without forcing people to be public about their most private concerns and financial situations to have any chance of funding, which the statistics show, probably still will not be enough.
Further, the funding of public goods and health care costs via GoFundMe decreases the demand on and responsibility of our institutions to improve health care access. The mere existence of health care crowdfunding legitimizes these institutional defects. Even Tim Cadogan, CEO of GoFundMe, has pleaded for the government to step up. We have been employing a form of “socially mediated abandonment” under the veneer of rugged individualism and altruism. Increasing privatization of American health care is not new or unique; but these decisions should be made thoughtfully, not out of desperation.
On the surface, using a public platform to increase a medical GoFundMe campaign’s visibility for those in greatest need seems democratizing because of the possibility of going viral. Regardless of the ethics, people in medical debt should have all opportunities to relieve their financial burden with any kind of fundraising. The problem is that it’s a crapshoot. Only 10 percent of campaigns meet their goals.
Our research shows that although crowdsourcing medical campaigns occasionally can be successful, it is an ethically problematic patch on a dysfunctional system. Absent large-scale reform of how health care is delivered, we must continue to find ways to support those in need, but we should not force people into self-exploitation and self-marketing to have a basic human right: access to adequate and reliable health care.
Jules Lipoff, M.D., is a senior fellow at the Leonard Davis Institute of Health Economics and an assistant professor of clinical dermatology at Perelman School of Medicine, both of the University of Pennsylvania. Erica Mark, medical student at the University of Virginia, contributed to this article. The opinions expressed in this article do not necessarily represent those of the University of Pennsylvania Health System or the Perelman School of Medicine.