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

Abstract

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.

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

“…Rationing is deeply problematic and there was a little debate regarding insulin’s effectiveness, with powerful descriptions of how it is lifesaving. Participants with type 1 diabetes in a previous study described insulin as “life or death” for them [ 36 ], but this analysis shows that the general public also appreciates the life-saving nature of insulin. We found little evidence of the stigma associated with being on insulin among people with type 1 diabetes, which has been reported in previous studies [ 48 ].…”

“…The implications of high-cost insulin were far reaching. While tweets reporting bankruptcy, stealing, and homelessness associated with the cost of insulin may seem like extreme subjects to post on a public platform, a study in 2020 with individuals with type 1 diabetes in the United States corroborated these stories [ 36 ]. Approximately 39.2% of the patients struggling to afford their insulin do not tell their health care professionals [ 37 ], making Twitter a potential way of identifying patients in need.…”

GoFundMe as a Medical Plan: Ecological Study of Crowdfunding Insulin Success

“…Though there is evidence that the cost of insulin affects all age groups [ 4 ], we found that over half of the campaigns were developed for individuals in middle adulthood. Middle adulthood is a time of the greatest financial stability, yet living with diabetes can greatly impact finances, marriage/divorce, raising and launching children, living with bad credit, employment, or medical insurance coverage, or result in exiting the workforce [ 6 , 24 ]. Additionally, those in middle adulthood are less likely to qualify for federal or state insurance programs compared with children and older adults.…”

“…Insulin access and affordability are critical barriers to preventing acute and long-term diabetes complications, yet people with diabetes report lack of support and resources from health care providers, pharmaceutical companies, insurance companies, hospital systems, and pharmacies [ 6 ]. Consequently, some people with diabetes are turning to social media crowdfunding as an attempt to relieve financial stress and obtain insulin.…”

Nanotechnology in Immunotherapy for Type 1 Diabetes: Promising Innovations and Future Advances

“…However, in the U.S., the price of insulin and insulin analogues has increased exponentially over the past several decades. Today, monthly out-of-pocket costs for T1D patients can range between $75–2000 depending on insurance coverage and insulin requirements, making proper treatment inaccessible for some individuals [ 60 ]. With the life-long insulin replacement therapy required to treat T1D patients, alternative forms of treatment must be developed to address the growing cohort.…”