Survey Shows Patients With Diabetes Turn to Black Market for Supplies

Marlene Busko

December 17, 2019

An online survey has shed light on patients with diabetes in the United States who donate, trade, borrow, or buy diabetes drugs and supplies through an "underground exchange" or black market.

The survey respondents — mainly adults with type 1 diabetes, but also parents of children with type 1 diabetes — were almost all living well above the poverty line and had health insurance, and yet they still had trouble paying the deductible or copays for their diabetes drugs and supplies, the survey reveals.

So they turned to their personal and online networks to prevent the "risk of out-of-range glucose levels, diabetic ketoacidosis, and even death," write Michelle L. Litchman, PhD, and colleagues, in their article published online December 4 in the Journal of Diabetes Science and Technology. The study was partially funded by the University of Utah.

"Without accessing a network of family, friends, and most often, online strangers, [these patients] would be at risk for serious acute complications," they observe.

"Patients are seeking out peers with diabetes for diabetes medications and supplies because traditional healthcare has failed them," Litchman, a nurse practitioner and researcher at the University of Utah College of Nursing, in Salt Lake City, told Medscape Medical News.

Providers "need to be aware that their patients may be engaging in these types of activities and be ready to counsel patients on how to best manage their diabetes while considering that the alternative to not using these underground exchanges for some people may be rationing or not taking medications at all," she emphasized.

"We hope that policymakers will understand what patients are having to go through in order to survive," Litchman added, "and that we need real policy change to make insulin and other diabetes medications and supplies accessible" to prevent unnecessary hospitalization and death.

Formal Study of Online Diabetes Community

The cost of analog insulin in the United States doubled from 2012 to 2016 to reach $15/day ($456/month) for the average patient, researchers note, and a recent study reported that one in four patients rations insulin because of cost.

There have also been anecdotal reports of patients buying, receiving, trading, and borrowing diabetes medications and supplies to keep their blood glucose under control, but this had not been formally studied before.

To investigate this, researchers surveyed participants in the online diabetes community.

Using Facebook, Twitter, and blog posts, they invited people in this community to fill in a survey between January and April 2019.

The survey included questions about demographics, household finances, and involvement in the black market of diabetes drugs and supplies.

Of the 159 respondents, two thirds were adults with diabetes, 19% were parents of a child with diabetes, and 6% had a spouse or family member with diabetes.

Eighty percent of patients had type 1 diabetes, 7% had type 2 diabetes, and 5% had another type of diabetes.  

They were a mean age of 42 (range, 20-72) years and 76% were women.

On average, the adults and children had had diabetes for 24 years and 7 years, respectively.

Only 12 respondents had an annual household income below $25,000 (the poverty line for a family of four in 2019).

Most respondents (72) had an income between $25,000 and less than $100,000, and 50 respondents had a household income of $100,000 or more. Seventeen did not reveal their income.  

Almost all (92%) had at least a college education.

Two thirds had health insurance from their employer, but 4% had no insurance, and 7.5% had Medicaid and another 7.5% had Medicare/disability insurance.

Donating, Receiving, Trading, Buying, or Borrowing Drugs, Supplies

Just over half of survey respondents (57%) reported they had given (donated) diabetes drugs or supplies to others in need, mostly out of a sense of altruism or wanting to "pay it forward."

Some participants built up a stockpile of diabetes drugs and supplies, donated some, and then started stockpiling again.

They mostly gave diabetes drugs or supplies to an online acquaintance (35%) or stranger (21%) or to a friend (26%), and less often to a family member or coworker (12%).

About a third (35%) reported receiving diabetes drugs or supplies through the black market — again, generally from an online acquaintance (15%), friend (9%), or online stranger (8%), and less often from a family member or coworker (5%).

In addition, almost a quarter (24%) had traded diabetes drugs or supplies (for example, they traded glucose test strips for medications) — usually with an online acquaintance (61%) or stranger (24%), and less often with a friend (8%) or a family member or coworker (4%). 

Only 15% of survey respondents reported actually paying for diabetes drugs or supplies on the black market.  

Less than a quarter of respondents (22%) had "borrowed" a diabetes drug, supply, or device. For example, they tried out an insulin pump and then returned it.

Some respondents reported driving to Canada or Puerto Rico where they could purchase cheaper insulin, or they had their friends or family members who traveled there ship it to them.

Some patients reported they engaged in the trading because they didn't want to have to use human insulin and return to multiple daily injections and fluctuating extremely high and low glucose levels.  

Others felt that without these more affordable drugs from the black market they would be making more frequent visits to the emergency room.

Still others reported that through their family and online network they could get timely, affordable insulin when they urgently needed it (for example, if they dropped a vial of insulin or ran out of insulin while traveling).

A handful of participants with type 1 diabetes used their network to try different brands of insulin, insulin pumps, and continuous glucose monitors (CGMs) before committing to certain products or brands.

One respondent reported giving her insulin and CGM to her sister who needed them, creating an added financial burden for herself.

Three respondents reported potential safety issues (for example, insulin that had not been refrigerated in one case).

Healthcare providers "must be aware about this underground exchange and inquire about safety and possible alternative resources," Litchman and coauthors write.

"Our study points to a failure in the US healthcare system since such underground exchanges may not be necessary if medications and supplies were accessible," they conclude.

J Diabetes Sci Technol. Published online December 4, 2019. Abstract

For more diabetes and endocrinology news, follow us on Twitter and Facebook.


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.