When Insurance Doesn’t Cut It, Diabetes Patients Turn to Crowdfunding

Even with insurance, some people with diabetes are turning to crowdfunding to keep up with high medical costs, researchers reported.

Looking at 313 crowdfunding campaigns posted in recent years, only 6% specifically requested money for insulin costs, found Caroline Sloan, MD, MPH, of Duke University School of Medicine in Durham, North Carolina, and colleagues.

Another 10% of the campaigns were raising money for insulin pumps, while 6% were looking to raise money to buy a continuous glucose monitor, according to the research in Annals of Internal Medicine.

The biggest source of direct medical expenses people were raising money for were those not related to glucose control at all, such as bariatric surgery or hospitalizations for diabetes-related infections. Other direct medical costs not pertaining to medications or supplies, like unspecified laboratory tests, unspecified medical bills, and medical debt, were also large drivers of these crowdfunding campaigns, the investigators found.

Nearly half of the campaigns were seeking money for indirect expenses. These included lost wages due to illness, buying healthier food, lifestyle changes like personal trainers, moving to be closer to better medical care, transportation costs to doctor appointments, home modifications for physical disabilities, and funeral expenses.

People with type 2 diabetes or those who didn’t specify their type of diabetes in their campaign were more likely to be raising money for these indirect medical costs than those with type 1 diabetes (63% vs 34%).

Sloan said her group was “surprised by the sheer breadth” of indirect medical expenses that patients needed help covering.

“A large body of literature has shown that the majority of patients want to talk about their financial struggles with their clinicians and other clinic staff,” Sloan told MedPage Today in an email. “When clinicians talk about costs with their patients who have diabetes, they should ask about more than just direct medical costs of diabetes care. They should also ask about expenses related to travel, parking, equipment, healthy food, etc.”

“These conversations may help clinicians figure out ways to help reduce some of these indirect costs like doing a telehealth visit once in a while if clinically appropriate,” she added. “These conversations may also bring up tradeoffs that patients have been making — e.g., pay for my medications vs pay for healthy food — and clinicians may be able to help patients think through how to prioritize certain expenses over others when funds are limited.”

Another 21% of campaigns were looking to put funds toward buying a diabetic alert dog, which run upwards of $15,000 and aren’t covered by insurance. Medical alert dogs accounted for 35% of all campaigns started by people with type 1 diabetes, the researchers said.

Overall, campaigns goals ran between $4,500 all the way up to $15,000 (median goal $10,000). Only 14% of campaigns reached their fundraising goal, though, with a median amount raised of $2,600.

While 27% of people said they had insurance, nearly all insured patients said their out-of-pocket costs were too high or that insurance didn’t cover all expenses.

“According to several recent surveys, in the U.S. roughly 40% of patients with diabetes and their families report some level of financial hardship related to their medical care. Of those who report financial hardship, over half report having delayed or [forgone] care,” Sloan explained when discussing why her group took on this study.

“I’ve been happy to see over the last few years that legislators and policymakers are making efforts to reduce the costs of some aspects of diabetes care, like insulin and other life-saving medications … but people with diabetes have to contend with much more than just medicines,” she pointed out. “They also have to check their blood sugar multiple times per day with a glucometer, see their doctor at least once every 3 months, and pay close attention to the food they eat and the energy they expend.”

“We wanted to begin to understand the breadth of expenses that patients with diabetes have to face. We knew that some people used crowdfunding to raise money for these expenses, so we decided to look there to get a preliminary idea of what patients with diabetes may struggle most to afford,” Sloan explained, while pointing out that this population isn’t necessarily representative of all patients with diabetes, since many people who struggle with medical costs don’t use crowdfunding.

Of the randomly selected 313 crowdfunding campaigns, 52% were started by men, 31% by women, and 17% by individuals with they/them pronouns. All were posted on GoFundMe.com between 2010 and 2020. A total of 177 of the campaigns were for people with type 1 diabetes, 16 for type 2 diabetes, and 120 with an unspecified diabetes type.