Underground exchange of medication and resources was highly prevalent in a cohort of individuals with diabetes, per study data published in the Journal of Diabetes Science and Technology.
Investigators administered an online survey to a convenience sample of “diabetes online community” (DOC) users. The DOC encompasses people affected by diabetes who engage with web-based activities related to the disease, such as interacting with online forums, blogs, and social networks. The study was announced across several social media platforms. Interested individuals could access an 88-question survey through a link in the announcement. The survey captured sociodemographic characteristics, personal health history, relationship with diabetes, and presence of diabetes-related financial stress. Participants were asked whether they had donated, traded, borrowed, or purchased diabetes-related supplies from an unauthorized source. In addition to multiple choice options, 26 open-ended questions were asked. Logistic regression was used to identify predictors of underground market participation. Thematic qualitative analysis was performed on open-ended questions.
A total of 159 participants provided survey data, of whom 106 were adults with diabetes and 40 were care partners or caregivers. The average age was 42 years, and the majority of participants were women (77.5%), white (91.2%), and college educated (75.5%). Significant proportions of the sample identified themselves as donors (n=90; 56.6%), donation receivers (n=55; 34.6%), traders (n=38; 23.9%), purchasers (n=24; 15.1%), or borrowers (n=35; 22%) in the underground market for diabetes supplies. Diabetes-related financial strain was significantly predictive of trading diabetes medications or supplies (odds ratio, 6.3; 95% CI, 2.2-18.5) and of receiving donated medications or supplies (odds ratio, 2.8; 95% CI, 1.1-7.2). Respondents who reported trading did so more often with online acquaintances and strangers (84.2%) than with closer contacts such as family, friends, or coworkers.
From the qualitative analysis, researchers concluded that there is an unmet need for diabetes supplies, likely as a result of inequities present in the healthcare industry. In addition, 3 subthemes were identified: factors influencing underground exchange activity, including altruism and perceived cheaper prices; perceived benefits of underground exchange activity, including preventing hospitalization and death; and perceived consequences of underground exchange activities, including safety issues regarding unregulated supplies.
These study data underscore the real-world effect of high pharmaceutical drug pricing. Significant numbers of patients and caretakers reported purchasing medications from unauthorized suppliers or donating, trading, or borrowing medications. Self-reported reasons for this included avoiding adverse health effects and circumventing “bureaucratic delays in care.” Patients should not be forced to engage with an underground market to afford life-saving medications, nor to receive timely care. A health policy change is long overdue: one that makes diabetes management accessible to all.
Litchman ML, Oser TK, Wawrzynski SE, Walker HR, Oser S. The underground exchange of diabetes medications and supplies: donating, trading, and borrowing, oh my! [published online December 4, 2019]. J Diabetes Sci Technol. doi:10.1177/1932296819888215