The Underground Exchange of Diabetes Medications and Supplies: Donating, Trading, and Borrowing, Oh My!

Litchman, Michelle L.; Oser, Tamara K.; Wawrzynski, Sarah E; Walker, Heather R.; Oser, Sean M.

doi:10.1177/1932296819888215

Cited by 20 publications

(23 citation statements)

References 24 publications

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“…Twitter appeared to be an informal marketplace for trading anti-diabetic drugs, although we did not confirm actual transactions. The overall sentiment of the tweets is that the lack of affordable anti-diabetic drugs is unfair and detrimental to health, which is in agreement with the findings of Litchman et al [ 42 ], who reported that those giving away their extra anti-diabetic drugs did so out of altruism and frustration at the lack of pricing regulations rather than the need to profit. Some tweeters travelled abroad to purchase their anti-diabetic drugs; these tweeters are among the estimated 2.3 million US individuals who buy their medications abroad [ 43 ].…”

Section: Discussionsupporting

confidence: 86%

Public Perspectives on Anti-Diabetic Drugs: Exploratory Analysis of Twitter Posts

Golder¹,

Bach²,

O’Connor³

et al. 2021

JMIR Diabetes

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Background Diabetes mellitus is a major global public health issue where self-management is critical to reducing disease burden. Social media has been a powerful tool to understand public perceptions. Public perception of the drugs used for the treatment of diabetes may be useful for orienting interventions to increase adherence. Objective The aim of this study was to explore the public perceptions of anti-diabetic drugs through the analysis of health-related tweets mentioning such medications. Methods This study uses an infoveillance social listening approach to monitor public discourse using Twitter data. We coded 4000 tweets from January 1, 2019 to October 1, 2019 containing key terms related to anti-diabetic drugs by using qualitative content analysis. Tweets were coded for whether they were truly about an anti-diabetic drug and whether they were health-related. Health-related tweets were further coded based on who was tweeting, which anti-diabetic drug was being tweeted about, and the content discussed in the tweet. The main outcome of the analysis was the themes identified by analyzing the content of health-related tweets on anti-diabetic drugs. Results We identified 1664 health-related tweets on 33 anti-diabetic drugs. A quarter (415/1664) of the tweets were confirmed to have been from people with diabetes, 17.9% (298/1664) from people posting about someone else, and 2.7% (45/1664) from health care professionals. However, the role of the tweeter was unidentifiable in two-thirds of the tweets. We identified 13 themes, with the health consequences of the cost of anti-diabetic drugs being the most extensively discussed, followed by the efficacy and availability. We also identified issues that patients may conceal from health care professionals, such as purchasing medications from unofficial sources. Conclusions This study uses an infoveillance approach using Twitter data to explore public perceptions related to anti-diabetic drugs. This analysis gives an insight into the real-life issues that an individual faces when taking anti-diabetic drugs, and such findings may be incorporated into health policies to improve compliance and efficacy. This study suggests that there is a fear of not having access to anti-diabetic drugs due to cost or physical availability and highlights the impact of the sacrifices made to access anti-diabetic drugs. Along with screening for diabetes-related health issues, health care professionals should also ask their patients about any non–health-related concerns regarding their anti-diabetic drugs. The positive tweets about dietary changes indicate that people with type 2 diabetes may be more open to self-management than what the health care professionals believe.

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Section: Discussionsupporting

confidence: 86%

Public Perspectives on Anti-Diabetic Drugs: Exploratory Analysis of Twitter Posts

Golder¹,

Bach²,

O’Connor³

et al. 2021

JMIR Diabetes

View full text Add to dashboard Cite

show abstract

“…Among these concerning behavioral responses, participants’ reliance on underground markets to purchase or trade insulin and diabetes supplies from other people with T1D raises several safety and regulatory issues. Litchman and colleagues ( Litchman, Oser, Wawrzynski, Walker, & Oser, 2019 ), who identify “diabetes-specific financial stress” as a key predictor of engagement in underground supply trading, suggest the existence of alternative markets indicates a failure of the U.S. healthcare system to support access to essential medicines for people with diabetes. Furthermore, strategies like rationing or using expired or denatured insulin simultaneously placed participants at high-risk of developing hyperglycemia, DKA, and long-term complications.…”

Section: Discussionmentioning

confidence: 99%

“Life or death”: Experiences of insulin insecurity among adults with type 1 diabetes in the United States

Willner

Whittemore

Keene

2020

SSM - Population Health

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Objective Insulin access for people with diabetes is a growing public health concern and particularly important for people with type 1 diabetes (T1D) who depend on insulin for survival. However, few studies have examined the psychosocial contexts in which people with T1D confront, navigate, and attempt to resolve insulin access barriers (IABs). We conducted a qualitative study to: 1) describe factors affecting insulin access among adults with T1D, 2) characterize behavioral and emotional responses to IABs, and 3) understand the overall impact of IABs on the lives of adults with T1D. Methods We recruited a geographically and age diverse sample of U.S. adults with T1D ( n = 21) from online diabetes support groups who self-identified as facing IABs. We conducted semi-structured phone interviews lasting 45–60 min between April and October 2017. We followed an inductive coding approach to identify concepts and themes related to participants' experiences with IABs. Findings Participants conceptualized the experience of being without insulin as a “life or death” emergency, which significantly influenced their subsequent behavioral and emotional responses to compromised insulin access. Participants also described multiple IABs including unaffordable health care, institutional unresponsiveness, and major life transitions. Unable to consistently depend on the U.S. healthcare system to address their insulin needs, participants described taking strategic actions to maximize their existing insulin supplies, obtain more insulin, and create long-term security against future IABs. These strategies were not always successful and often negatively impacted participants’ health, finances, careers, relationships, and future opportunities. Conclusions Disruptions in insulin access or the threat of future disruption, a concept we term “insulin insecurity,” is a barrier to health and well-being among people with T1D. Our findings suggest the U.S. healthcare system is ill-equipped to address insulin needs among adults with T1D.

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“…Emerging adults, and the general population, often lack knowledge about their insurance because of everchanging and complicated insurance coverage policies (e.g., coverage for various insulin brands or diabetes technology). Litchman et al (6) found that those with health insurance still struggled to obtain medications and supplies because of high deductibles and extremely high copayment requirements. In our study, participants were obtaining insulin from other countries (e.g., Canada or Mexico) because of the high cost of insulin in the United States.…”

Section: Discussionmentioning

confidence: 99%

“…Emerging adults may be more vulnerable to rationing insulin and financial stress (5). The inability to afford diabetes care has increased to the point where some emerging adults are rationing or seeking alternative sources (e.g., black market) to access what they need to survive (6).…”

mentioning

confidence: 99%

Financial Barriers in Emerging Adults With Type 1 Diabetes: A Qualitative Analysis

et al. 2022

Self Cite

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Background Emerging adulthood is a period fraught with challenging life transitions for many and is especially difficult for individuals with type 1 diabetes, as they encounter more obstacles to independently managing their diabetes. We examined the barriers faced by emerging adults and parents of emerging adults with type 1 diabetes and the impact these barriers had on their lives. Methods Emerging adults and parents of emerging adults with type 1 diabetes were recruited from primary care and specialty clinics and via social media posts. In the parent study, semi-structured interviews were conducted to understand what supported and did not support diabetes self-management. Interviews were transcribed, coded, and analyzed for common themes. This sub-analysis analyzed data related to financial challenges in accessing diabetes management equipment and supplies. Results This study included emerging adults with type 1 diabetes (n = 33; mean age 20 ± 2.9 years) and parents of emerging adults with type 1 diabetes (n = 17; mean age 47.5 ± 6.9 years). The majority of emerging adults used an insulin pump and continuous glucose monitoring system (n = 24 [73%]). Four main themes emerged related to access to care: 1) affordability of diabetes management tools, 2) managing insurance, 3) communication with pharmacies and health care providers, and 4) emotional consequences of financial stress. Conclusion The current health system is challenging for emerging adults with type 1 diabetes and parents and is causing substantial emotional and financial stress. Future research is needed to address interventions for helping emerging adults and their parents navigate the cost of living with diabetes.

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The Underground Exchange of Diabetes Medications and Supplies: Donating, Trading, and Borrowing, Oh My!

Cited by 20 publications

References 24 publications

Public Perspectives on Anti-Diabetic Drugs: Exploratory Analysis of Twitter Posts

Public Perspectives on Anti-Diabetic Drugs: Exploratory Analysis of Twitter Posts

“Life or death”: Experiences of insulin insecurity among adults with type 1 diabetes in the United States

Financial Barriers in Emerging Adults With Type 1 Diabetes: A Qualitative Analysis

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