Out-of-pocket expenses and rationing of insulin and diabetes supplies: findings from the 2022 T1International cross-sectional web-based survey

Abstract

IntroductionContinue investigating Out-of-Pocket Expenses (OoPEs) and rationing of insulin and diabetes supplies, including impacts of the COVID-19 pandemic, for people with type 1 diabetes (T1D).MethodsA cross-sectional web-based survey was conducted in English and advertised by T1International’s global network of patient advocates from May through September 2022. Participants provided monthly OoPEs and rationing frequency for insulin and supplies, impacts of the COVID-19 pandemic, and open-ended comments.ResultsIn the seven most represented countries, mean monthly OoPEs were highest in the United States, followed by Panama, Canada, and India, and were much lower in the United Kingdom, Germany, and Sweden. OoPEs were highest for participants with partial healthcare coverage, followed by those with no healthcare coverage. The COVID-19 pandemic negatively impacted access and/or affordability of insulin and/or supplies for over half of participants. Globally, 19.5% reported insulin rationing and 36.6% reported rationing glucose testing supplies. Qualitative analysis of open-ended responses identified themes such as ‘mental health impacts’ and ‘limits to life choices.’DiscussionHigh OoPEs lead to rationing of insulin and supplies for many people with T1D globally. Healthcare systems improvements and price reductions of insulin and supplies are needed to ensure adequate, equitable access for all.

Living with and managing type 1 diabetes in humanitarian settings: A qualitative synthesis of lived experience and stakeholder tacit knowledge

“…First, health infrastructure such as prescription, pharmaceutical and delivery services may be disrupted, resulting in the rationing of insulin and other diabetes supplies (e.g., blood glucose meters, insulin needles) [ 52 ]. Rationing of insulin and glucose test supplies has also been reported in several countries with more stable health systems, where health financing and access schemes do not ensure an affordable, adequate or continuous supply (USA, Panama, India, and Canada) [ 53 ]. Disruption of food and potable water is also a significant danger to PWT1D, who are at risk of life-threatening GV without consistent, balanced meals [ 54 ].…”

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“…First, health infrastructure such as prescription, pharmaceutical and delivery services may be disrupted, resulting in the rationing of insulin and other diabetes supplies (e.g., blood glucose meters, insulin needles) [52]. Rationing of insulin and glucose test supplies has also been reported in several countries with more stable health systems, where health financing and access schemes do not ensure an affordable, adequate or continuous supply (USA, Panama, India, and Canada) [53]. Disruption of food and potable water is also a significant danger to PWT1D, who are at risk of life-threatening GV without consistent, balanced meals [54].…”

“…Economic constraints, and catastrophic out-of-pocket health payments is not unique to T1D management, and is also experienced by people living with T1D outside of humanitarian settings to various degrees [53]. These overarching discussions relate to the management of T2D and many other NCDs, mental health and neurological conditions.…”

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“…First, health infrastructure such as prescription, pharmaceutical and delivery services may be disrupted, resulting in the rationing of insulin and other diabetes supplies (e.g., blood glucose meters, insulin needles) [52]. Rationing of insulin and glucose test supplies has also been reported in several countries with more stable health systems, where health financing and access schemes do not ensure an affordable, adequate or continuous supply (USA, Panama, India, and Canada) [53]. Disruption of food and potable water is also a significant danger to PWT1D, who are at risk of life-threatening GV without consistent, balanced meals [54].…”

“…Economic constraints, and catastrophic out-of-pocket health payments is not unique to T1D management, and is also experienced by people living with T1D outside of humanitarian settings to various degrees [53]. These overarching discussions relate to the management of T2D and many other NCDs, mental health and neurological conditions.…”