Patients with diabetes are increasingly turning to GoFundMe to pay medical bills

Key takeaways:

• Many patients with diabetes struggle with paying their medical bills.
• Researchers assessed 313 crowdfunding campaigns for people with diabetes to learn more about their financial struggles.

Many people with diabetes in the United States have turned to crowdfunding to pay their medical bills, even though a quarter of patients sampled had insurance, according to the results of research published in Annals of Internal Medicine.

In the United States, more than 40% of patients with diabetes struggle to pay their medical bills. Among those patients, more than half — 56% — have either delayed or foregone care entirely, Caroline E. Sloan, MD, MPH, a primary care physician at Duke University School of Medicine, and colleagues wrote. One estimate suggested that the average patient who is dependent on insulin and has insurance spends about $4,800 every year on physician visits, supplies, medications, hospitalizations and lost wages — the equivalent to 15% of the median U.S. per capita income.

In response, patients facing financial-related health struggles are increasingly turning to crowdfunding to cover their medical costs. Sloan and colleagues wrote that crowdfunding campaigns “can shed light on the types of expenses that patients with diabetes may struggle to afford.”

“Crowdfunding campaigns provide a window into the wide range of financial struggles that patients with diabetes may face,” they wrote.

The researchers conducted a study leveraging the rich real-world testimonies in crowdfunding campaigns to characterize the financial challenges of patients with diabetes who seek fundraising support.

They evaluated 313 GoFundMe campaigns — 89% of which were posted from 2015 to 2020 — describing patients’ medical situations, expenses and fundraising goals. The researchers included an oversampling of type 1 diabetes campaigns so they could have roughly even proportions of type 1 and non-type 1 diabetes campaigns “and ensure a wide breadth of experiences.”

Sloan and colleagues found that the median fundraising goal was $10,000, the median amount raised was $2,600, and just 14% of campaigns reached their goal.

Additionally, 25% of fundraisers had insurance, but 49% of those who did have insurance said their out-of-pocket costs were still too high. Fewer than 10% requested money specifically for insulin; 48% of direct medical expenses were not directly related to glucose control.

When it came to characteristics of campaigns for types of diabetes, they found that 21% of total campaigns — almost all of which were campaigns for type 1 diabetes — requested money for diabetic alert dogs. Campaigns not for type 1 diabetes mentioned indirect medical expenses more often than campaigns for type 1 diabetes: 63% vs. 34%.

“Thirty-five percent of patients with type 1 diabetes started fundraising campaigns for diabetic alert dogs, which cost about $15,000 and are not covered by insurance because of high variability in effectiveness,” the researchers wrote. “Clinicians who learn of a patient’s intent to purchase a dog could redirect them toward proven management strategies, such as continuous glucose monitors.”

Indirect medical expenses, Sloan and colleagues wrote, included:

• lost wages;
• healthy food;
• personal trainers;
• home modifications to support new physical disabilities;
• car repairs to enable transportation to physicians’ appointments;
• moving to a new city to be closer to state-of-the-art medical care; and
• funeral expenses.

“Many aspects of diabetes care beyond insulin can be cost-prohibitive, including indirect expenses that clinicians may not be equipped to address,” Sloan and colleagues wrote. “Although the Inflation Reduction Act’s cap on out-of-pocket costs for insulin is an important step in making care more affordable, policymakers should address other diabetes-related costs as well.”