Manar Marzouk, Research Fellow | Dr Éimhín Ansbro, Assistant Professor and GP

More than 100 years have passed since Dr Frederick G. Banting and colleagues’ groundbreaking discovery of insulin in 1921, yet lifesaving insulin is still inaccessible for many people living with diabetes in low- and middle-income settings. One in ten adults globally has diabetes, with three-quarters living in low- and middle-income countries (LMICs). People living with type 1 diabetes (T1D) make up around 2% of all diabetes cases, affecting over nine million people, a third of whom live in LMICs. People living with T1D rely on insulin for survival, yet without supportive policies for insulin procurement, supply, and pricing, and in the absence of universal healthcare, many must cover high costs out-of-pocket, increasing their risk of severe health complications.

Longer-acting insulin analogues show promise in reducing hypoglycaemia, though evidence from LMICs is limited. Widely used in high-income countries and recently added to the WHO Essential Medicines List, the use of analogues in LMICs is limited by high costs and a lack of efficacy data. 

In 2022, LSHTM launched a qualitative study to explore patient, caregiver and provider experiences of living with T1D and of switching from human to analogue insulins in Tanzania and Bangladesh. This was part of a randomised controlled trial (RCT) called HumAn-1, led by the University of Pittsburgh. In the qualitative study, we looked at patients’ experiences of managing type 1 diabetes in lower resourced settings, including their daily life, exercise, diet, use of insulin, continuous glucose monitoring, and patient and caregiver priorities. During the 18-month study, we visited one of our sites in Mwanza, Tanzania to better understand the social constraints around the use of insulin, including traditional healers, stigma, and the roots of these two issues. The following provides insights from our study site visits and validation workshops in Mwanza, where we highlight some social and cultural challenges around insulin use, with findings to be published soon.

Living with T1D in low- and middle-income settings presents a set of daily challenges that are rarely documented compared to those faced in high-income countries. Many parents describe their child’s diagnosis with T1D as traumatic, with many sleepless nights spent worrying about their child becoming hypoglycaemic. Access to insulin in Tanzania is limited by poverty and a lack of universal healthcare, with a vial costing around 2,500 Tanzanian shillings (about ten dollars), while the minimum monthly wage is only 148 dollars. Although the Tanzanian Diabetes Association (TDA) provides free insulin for patients registered in their programmes, they still face additional costs, such as transportation, hospital admission fees and glucose monitoring strips. In addition, TDA subsidised services cover a limited number of regional hospitals in Mwanza: Bugandou and Sekou Toure, limiting access for many in rural areas.

To cope with the high costs of managing T1D, patients and caregivers often resort to decreasing the frequency of blood glucose monitoring and rationing insulin doses to reduce healthcare visits. Storing insulin without refrigeration is another challenge; many families use traditional clay pots to keep the vials at optimal temperatures – a practical solution backed up by MSF’s recent study showing insulin’s stability in warm temperatures for up to four weeks. Rather than self-managing their doses, children are often prescribed fixed doses of insulin and need to eat regular, healthy and consistent meals. This is often challenging for families to afford and for young people trying to live a normal life and fit in with peers.

Beyond economic barriers, social stigma compounds the challenges of living with T1D in Tanzania. Stigma is especially visible in marriage prospects: women living with T1D can be seen as financial burdens or unfit for bearing children, while men face stigma around their sexual ability. Consequently, many families hide the diagnosis to protect children from discrimination at school and in the community. Some  children and adults skip their mid-afternoon insulin doses to avoid injecting themselves in public, which raises the risk of hyperglycaemia. Children living with T1D are sometimes seen as being cursed and this, along with the costs of hospital-based care, mean many are sent to traditional healers. Parents also turn to traditional healers in hopes of a cure, rather than their child facing a lifetime of hardship.

For young adults living with T1D, turning 25 often marks the end of subsidised insulin. Although some TDA programs involve patients in livelihood activities to help generate income, many still struggle to afford insulin and die as a result. There is an urgent need for sustainable and affordable insulin access across all ages.

As we mark World Diabetes Day, it’s a crucial time to amplify the call to improve insulin access in Tanzania and beyond. Expanding funding for organisations like TDA, advocating to include insulin on essential drug lists and as part of a universal health care package, extending social welfare programmes to support treatment-related costs, addressing stigma and offering mental and health and psychosocial support to young people living with T1D and their families, are all vital steps to address these challenges and ensure everyone with T1D has the chance to live well.