Medical Crowdfunding Is Not Providing a Proper Safety Net for the Neediest Patients
December 1, 2022 5 minutes read
More than 250,000 medical crowdfunding campaigns launch on GoFundMe annually.1 However, there are significant ethical concerns, such as the risk of expanding inequities in healthcare.
“We kept hearing GoFundMe referred to as an ‘ad-hoc’ or ‘informal’ safety net in online discussions, news coverage, even some of GoFundMe’s own materials,” says Nora J. Kenworthy, PhD, an associate professor at the University of Washington School of Nursing and Health Studies.
Kenworthy and colleagues analyzed more than 175,000 campaigns created during the first half of 2020.2 They learned crowdfunding was most effective in areas with both high incomes and high education levels. “Our research indicated it was simply not true that GoFundMe was acting as a safety net,” Kenworthy says.
While safety nets are supposed to catch everyone in need equally, crowdfunding can be more effective for some people than others. In a subsequent study, researchers explored this topic further. “We wanted to analyze in what situations was medical crowdfunding actually successful, and how does that align with places where health financing needs are highest in the U.S.,” Kenworthy says.
Kenworthy and a colleague analyzed 437,536 GoFundMe fundraising campaigns that took place between 2016 and 2020.3 The campaigns received 21.7 million donations, but varied widely in their returns. Just 12% of campaigns met their goals, and 16% received no donations. Overall, people in states with more uninsured populations, worse poverty, and higher rates of medical debt were more likely to try to raise funds, but were less likely to succeed. “The data used in the study included a subset of campaigns that had been missing from a lot of prior research,” Kenworthy notes.
Those campaigns were mostly much less successful. “That gave us a more comprehensive understanding of just how much crowdfunding helps, and doesn’t help,” Kenworthy says.
Taken as a whole, the findings suggest medical crowdfunding is not working as a safety net for the people who need it most. Medical crowdfunding earns the most in places that have the least health financing needs. “This raises really clear health equity concerns,” Kenworthy says.
There are multiple other ethical concerns with crowdfunding. Different demographic groups appear to experience disparate outcomes. There are privacy and data usage concerns. Also, there is the potential for giving false hope to people who are in dire straits, both financially and medically. An overarching ethical concern is thinking medical crowdfunding could diminish support for other, more formal safety nets. “If we think we can just start a GoFundMe when there’s a crisis, we may be less inclined to understand the importance of strengthening formal safety nets and forms of health coverage that could more equitably protect people,” Kenworthy explains.
On the positive side, crowdfunding offers support to some people who are struggling with health issues. “Even beyond material support, it can provide social connection and a way to keep people informed about what’s going on,” Kenworthy offers.
As with other medical choices, physicians can help patients make decisions on crowdfunding and its risks and benefits. “We should be having well-informed conversations with patients if they express a desire to crowdfund,” Kenworthy says.
Physicians can offer a reality check, reminding patients many campaigns raise little or nothing. Other downsides are the requirement to share personal health information with a public audience. There always is the possibility a campaign could raise far more money than the patient needs.
“If so, clinicians could encourage families to use some of their donations to support a less successful campaign from a patient at the same hospital or with a similar diagnosis,” Kenworthy suggests.
Clinicians also can talk about what to do if the campaign does not end up covering the cost of treatment. To start the conversation, Kenworthy offers this scripting: “I heard your family talking about starting a GoFundMe. Crowdfunding can be an important way of gaining support when you are sick, but it’s good to know what to expect. Could I share some information with you?”
Another suggestion is this: “Crowdfunding can seem like an easy way to raise money. But many don’t know it requires quite a bit of work, and a lot of campaigns don’t reach their goals. Most people can expect to raise a couple hundred, maybe a couple thousand, dollars — at most. It also can mean sharing private information about your health or finances publicly online. At the same time, many people appreciate the way crowdfunding allows them to easily receive emotional and social support from friends and family. I want you to know there are other options we have to help you pay for care if you’d like to hear about them.”
“This could be part of a broader conversation about financial support options — hospital programs for needy patients, public insurance coverage options, or payment plans,” Kenworthy adds.
Another group of researchers surveyed 46 young adults with cancer who crowdfunded their medical expenses. “Having to pursue medical crowdfunding was an unexamined — yet growing — facet of how young adult cancer survivors are able to access needed financial capital for necessary medical treatment,” says Lauren Ghazal, PhD, FNP-BC, the study’s lead author and a young cancer survivor.
“From personal experience, there can be a lot of emotions at play. You are diagnosed with cancer in your 20s or 30s, you’re trying to be financially independent, you get sick, and you must lean on others for help,” Ghazal says.
Respondents answered open-ended questions, with many reporting that crowdfunding was useful. One commented, “It helped cover costs I wouldn’t have been able to cover on my own.” At the same time, participants reported feelings of stigma. One stated, “I felt uneasy asking for help paying for bills and living costs while I went through chemo.”
“Young adults with cancer had to hold space for both the shame and necessity of asking for financial assistance during a time of extreme vulnerability and facing one’s own mortality,” says Ghazal, a postdoctoral research fellow at the University of Michigan.
Many questioned, in one way or another, why it was necessary to have to ask for money to pay for life-saving treatment.
“This is a sort of check on our healthcare system at large,” Ghazal says. “Crowdfunding occurs because of the inadequacies of our healthcare system.”
REFERENCES
1. GoFundMe. Get help with medical fundraising.
2. Igra M, Kenworthy N, Luchsinger C, Jung JK. Crowdfunding as a response to COVID-19: Increasing inequities at a time of crisis. Soc Sci Med 2021;282:114105.
3. Kenworthy N, Igra M. Medical crowdfunding and disparities in health care access in the United States, 2016-2020. Am J Public Health 2022;112:491-498.
4. Ghazal LV, Watson SE, Gentry B, Santacroce SJ. “Both a life saver and totally shameful”: Young adult cancer survivors’ perceptions of medical crowdfunding. J Cancer Surviv 2022; Feb 16:10.1007/s11764-022-01188-x. doi: 10.1007/s11764-022-01188-x. [Online ahead of print].
While safety nets are supposed to catch everyone in need equally, crowdfunding can be more effective for some people than others. People in states with more uninsured populations, worse poverty, and higher rates of medical debt are more likely to try to raise funds, but are less likely to succeed.
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