Crowdsourcing for Cancer Therapy Favors Advantaged

Roxanne Nelson, RN, BSN

December 03, 2020

Crowdfunding has evolved as a means for patients to help finance their cancer treatments, but a new study found that the practice is skewed toward those of higher socioeconomic status.

This is the largest reported sample of US cancer crowdfunding campaigns to date. A total of 144,061 campaigns were included in the analyses, the authors note.

They found that crowdfunding campaigns raised the most money when they were located in geographic areas of higher socioeconomic status and when there was sufficient "internet literacy" to describe the patient as being worthy of donation.

"These findings suggest that crowdfunding's reliance on access to interpersonal wealth and proficiency in digital self-marketing may disproportionately benefit those with existing socioeconomic advantage," they add.

In turn, this can exacerbate the current disparities in socioeconomic status and further marginalize those most at risk for financial toxicity, they note.

The study was published online December 3 in JAMA Network Open.

"Arguably, crowdfunding platforms are a reflection on the state of modern health care delivery in the US," comments S. Yousuf Zafar, MD, MHS, from the Duke Cancer Institute and the Duke-Margolis Center for Health Policy, Durham, North Carolina, in an accompanying editorial.

Even in the midst of generosity, we face growing disparities between the have-nots and the haves-even-less. Dr S. Yousuf Zafar

"We live in a country where some patients have to crowdsource their health care expenses, and even in the midst of generosity, we face growing disparities between the have-nots and the haves-even-less," he writes.

Where to Go From Here?

As the cost of healthcare and out-of-pocket expenditures continue to rise, crowdfunding is becoming increasingly common as a means to help finance medical care. For cancer patients, unpaid medical bills was the most pressing need in crowdfunding campaigns, according to a study published last year. That analysis, which evaluated more than 1000 campaigns, found that 41% of appeals requested funding to pay medical bills and that a quarter were seeking donations to pay for medical travel.

Although crowdfunding campaigns might seem like a harmless means of reducing a treatment-related financial burden, there is growing evidence of potential harm from these campaigns, Zafar cautions in his editorial.

"These harms include fake accounts, loss of privacy, and fundraising for unproven interventions," he writes. The current study adds to the list by showing the socioeconomic biases in fundraising.

So, Zafar says, the question is, where to go from here? The cost of cancer treatment — and along with it, the patient's financial burden — will continue to increase. "More than likely, patients and families will continue to seek alternative sources of financial aid including crowdfunding campaigns," and patients in need should not be prevented from having access to these resources, he writes.

Instead of limiting access, important questions must be asked of crowdfunding platforms, such as, how will campaigns be held to the highest standards to ensure they are verified and how will platforms ensure that campaigns are highlighted and funds distributed equitably?

More Success With Higher Socioeconomic Status

In the current study, Elisabeth R. Silver, BS, of Columbia University Irving Medical Center, New York City, and colleagues conducted a cross-sectional analysis of cancer crowdfunding campaigns in the United States between 2010 and 2019.

The team found significant differences in amounts raised across what the authors termed "neighborhood deprivation index" quartiles. In the least deprived neighborhoods, the mean amount raised was $7402.94 (the mean goal was $12,184.61). For the most deprived neighborhoods, the mean amount raised was $4857.87 (the mean goal was $9797.49). The differences between the four quartiles were significant (P < .001).

Upon multivariable analysis, the authors found that campaigns that mentioned the beneficiary's warmth raised significantly more money than those that did not, but the association between the amount raised and gratitude was not significant. Campaigns that mentioned the beneficiary's self-reliance were also more likely to raise money than those that did not, the authors note.

Greater detail regarding the person's need was associated with a higher amount being raised, as were campaigns that mentioned the cancer type, treatment type, insurance, or out-of-pocket costs. Campaigns that mentioned the patient's bravery or used militaristic metaphors also raised significantly more money than those that did not, the authors note.

The study authors have disclosed no relevant financial relationships. Zafar has served on the advisory boards of AIM Specialty Health, Vivor, LLC (uncompensated), and SamFund (uncompensated) and on the board of directors of Family Reach Foundation (uncompensated) and Copernicus-WCG IRB. He has received research funding from the National Institutes of Health and AstraZeneca and has consulted for RTI, McKesson, Discern LLC, and Quintiles Corporation. His spouse is employed by Shattuck Labs.

JAMA Netw Open. Published online on December 3, 2020. Full text, Editorial

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