Like many health care providers, urologist Andrew J. Cohen, MD, had heard anecdotal stories of patients using crowdfunding sites like GoFundMe to raise money to cover their cancer treatment. But he always wondered how helpful they were to patients whose lives had been upended by what’s known as “financial toxicity” – a catchall phrase that includes such gut-wrenching statistics: According to a study published in October 2018 in The American Journal of Medicine, 42% of cancer patients had depleted their entire life savings within 2 years of being diagnosed.1

So Dr Cohen and his colleagues from University of California, San Francisco, set out to look at crowdfunding practices in more detail. Using the 20 most prevalent cancers in the United States as key words, the team searched the GoFundMe site and – after identifying more than 37,000 cancer campaigns across the country – randomly selected 1035 campaigns to analyze. What resulted was an “eye-opening snapshot” of patients’ financial situations, said Dr Cohen, who is a clinical instructor of urology at UCSF. While 41% of campaigns focused on help with paying medical bills, approximately a quarter asked for help with travel expenses, and another near-quarter mentioned other financial pressures, such as childcare and lost wages.

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Campaigns for people who were underinsured typically asked for $10,000 more than those who didn’t mention insurance, according to the study, which was published in September 2019 in JAMA Internal Medicine. 2 “This study is timely because as the country debates the Affordable Care Act, we wanted to know how the rising cost of cancer care was affecting people on an individual level,” said Dr Cohen. “We wanted to give voice to that.”

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Perhaps the most disheartening finding was that the campaigns received on average of only about a quarter of the amount of the money they requested. “Patients aren’t achieving their goal in this new-age safety net,” he said. “The financial burden of cancer treatment is real and deserves more attention and advocacy.” Dr Cohen added that the study serves as a wake-up call to his colleagues — they need to talk about the financial implications of care with their patients.

Unfortunately, plenty of research shows that doctors and patients aren’t having enough of these conversations. In fact, one 2016 study of 677 breast cancer patients that was published in Medical Decision Making found that only 1 in 5 had discussed health care costs related to treatment with a doctor.3 Or worse, when they do have these discussions, doctors aren’t hearing what patients are saying. One Duke University team analyzed the transcripts of such patient-provider discussions and identified a range of doctors’ responses in cases in which patients didn’t learn how to reduce their out-of-pocket spending. Doctors missed cues that patients were worried about the cost of care, didn’t fully acknowledge these concerns or dismissed them, or failed to help their patients find long-term solutions, according to the research published in 2016 in Health Affairs.4