A Medscape article reported on a 2023 JAMA Neurology study in that found medical crowdfunding, the practice of creating digital campaigns to raise money for health-related expenses, for neurologic disorders surged within 9 years at a yearly average rate of 44%. Of note, roughly 85% of campaigns were for health-insured people. These data clash with the optics of medical crowdfunding. The optics suggest it’s a convenient fallback to afford out-of-pocket (OOP) expenses. These data reaffirm what researchers and journalists report as pitfalls of medical crowdfunding: As a growing recourse to cover OOP expenses, medical crowdfunding is the reminder of increasingly cost-prohibitive medical services and treatments for both the uninsured but insured. The possible financial relief gained from medical crowdfunding doesn’t outweigh the pitfalls, which offer possible reasons why the healthcare arena may want to consider ways to curb reliance on the practice.
A cursory search for crowdfunding platforms online, such as GoFundMe, reveals that they are one click away. Combine the instantaneous availability to raise money with the potential of online crowdfunding to reach an expansive audience, and medical crowdfunding becomes an appealing resource for financial alleviation. This might explain the increased reliance on it for neurologic disorders. Insights from the study reported on in the Medscape article, however, bolster jarring data from a year-long investigation between KFF Health News, NPR, and CBS on medical debt, something people might be trying to avoid when they launch medical campaigns. The outlets reported more than 100 million people are unable to pay their health-related costs. When unaffordable medical expenses lead to medical debt, which the investigation reported 41% of adults in the United States have, it’s possible people must declare bankruptcy. Given that medical crowdfunding could help avoid that, patients or beneficiaries’ growing reliance on it tracks.
According to a 2014 study cited in a PatientEngagementHIT article, crowdfunding reduced medical-debt-induced-bankruptcies by 3.7%. That sends a message to people that medical crowdfunding is a form of financial security for those unable and needing to afford care. It’s illusory, though. Only 10% of campaigns succeed, a statistic that makes 3.7% appear nominal, especially relative to the 66.5% of bankruptcies that are declared from medical debt. That said, medical crowdfunding is a game of risk. If campaigners don’t achieve their goals and declare bankruptcy, then they’ve incurred an additional cost: compromised patient privacy. This is one major pitfall of medical crowdfunding.
Jeremy Snyder, PhD, who researches medical crowdfunding, explained in an op-ed for STAT News the demands of campaigners on crowdfunding platforms. Campaigners need to frame personal health details into compelling emotionally resonant narratives and strategize content marketing tactics in ways that influence social sharing. This will, ideally, expand audience reach and lead to donations. The expectation, however, to “personalize the personal” is asking patients or beneficiaries to make capital out of strife. For fundraisers to be effective, platforms encourage campaigners to reimagine suffering as a brand identity that involves sharing updates conducive to cultivating parasocial relationships with donors. In terms of medical privacy, this approach is warped and implicitly encourages campaigners to abandon their right to patient confidentiality.
For example, consider Zolgensma, the gene therapy for children younger than 2 with the rare genetic disease spinal muscular atrophy. Researchers in a study about the ethics of crowdfunding in pediatric neurology note the drug costs $2.1 million per dose (at the time of publication). In the analysis, researchers explain when gene therapy drugs such as Zolgensma are exorbitant in cost, and employer-sponsored insurance can’t cover them, parents are strapped into medical crowdfunding. Against a ticking clock to pay OOP for a potentially life-altering treatment, parents have no choice but to package details of their children’s private medical lives into campaigns that may or may not achieve financial goals. In the absence of foundation aid, effective repayment or health insurance plans, or improved prior authorization processes being timely or giving adequate relief, medical crowdfunding appears like the best bet. But it’s not a safe bet since medical crowdfunding is also an uncontained opportunity ripe for medical misinformation.
The study about ethics of crowdfunding in pediatric neurology reported that 13,050 donors contributed to 408 medical crowdfunding campaigns that downplayed risks or overstated efficacy. In the Zolgensma example, the study reported 12% of medical campaigns mischaracterized the drug as curative. Whether the erroneous details of campaigns are deliberate or inadvertent, there’s clearly a lack of oversight to ensure accuracy. Each time people share campaigns on social media, the network for those receiving and taking false information grows. If crowdfunding campaigns with inaccurate information are persuasive enough to inspire donations, regardless of whether campaigns reach their goals, then credibility is given to first-hand accounts before the medical profession. Marketing can influence us as much.
Just because guidelines suggest that marketing and Internet know-how indicate successful medical crowdfunding, that doesn’t make it true. Race and gender influence campaign outcomes, according to the Medscape article, which reported that Black people and women raise less than White men. Medical crowdfunding, then, is not an equal opportunity practice. Instead, the disadvantages of medical crowdfunding may widen social disparities in the healthcare arena. In this way, as Dr. Snyder explained in the STAT Newsop-ed, medical crowdfunding is symptomatic of problems in the healthcare arena.
While medical crowdfunding can help with OOP expenses, it can also compromise, worsen, or create problems for patients, beneficiaries, and physicians. Medical crowdfunding isn’t going away, nor is that necessarily warranted or even a practical solution. Perhaps, though, there’s a way to involve healthcare providers so that medical crowdfunding is a secondary or tertiary option, not primary fallback, when it comes to affording OOP expenses. The idea is to curb the shortcomings the practice exacerbates.
