Access to insulin remains elusive and expensive for many children and young people (CYP) living with type 1 diabetes (T1D) in low- and middle-income countries (LMICs), according to a report released Tuesday by the Access to Medicine Foundation.

The report evaluates 11 company-supported initiatives targeting children and young people by the market’s three dominant insulin producers – Lilly, Sanofi, and Novo Nordisk – and biosimilar manufacturer Biocon.

All four companies donate “vital” products or funding for insulin in 71 of 113 LMICs covered by the report, but as these are sustained by donations, “long-term, affordable diabetes care remains a critical challenge”, according to the foundation.

“While these contributions are meaningful and vital to the success of the initiatives, the heavy reliance on donations from industry partners creates a long-term uncertainty,” says the report.

“The lives of CYP depend on these initiatives, and any reduction or withdrawal of support could result in a sudden loss of access to critical products for hundreds of thousands of CYP.”

Ten of the 11 initiatives have set end dates or specific goals, with several scheduled to conclude by or before 2030, which “underscores the uncertainty of sustained access”. 

 “Hundreds of thousands of children and young people in low- and middle-income countries face significant barriers to accessing essential insulin, supplies and care for managing type 1 diabetes. While the pharmaceutical industry is engaged in the effort to bridge access gaps, as needs grow, initiatives must prioritise widespread coverage, sustainability and affordability to save lives, says Claudia Martínez, the foundation’s research director.

High cost of insulin

While Lilly and Novo Nordisk are adapting their models to “better align with local needs and are collaborating with partners to transition T1D care towards government ownership”, it won’t be possible to scale up access if the cost of insulin is not addressed, the report asserts.

For many children, the 11 industry initiatives remain their only way to access treatment, but in 2023, these collectively reached only about 8% of the estimated 825,000 children and youth in need across the 71 countries covered. 

Given that a significant proportion of diabetes in LMICs remains undiagnosed, it is highly likely that this represents an even smaller portion of young people who need access to insulin. 

“The public sector does cover the cost of insulin in some LMICs – either directly or through reimbursement. However, approximately 34% of people in LMICs still pay out of pocket for healthcare, and in many African nations, individuals cover the full costs themselves,” the report notes.

“The need for support remains overwhelming, and for those who are unable to access initiatives, access to the lifesaving care they need remains out of reach.”

A small percentage of initiatives in LMICs have evolved from providing insulin in vials for injection to insulin analogues and insulin pens, which are easier to administer to children and widely accessible in wealthier countries. There is also a lack of access to diabetes monitoring tools 

Some initiatives also include education and training. Seven support training for healthcare professionals to tackle the high rates of misdiagnosis and undiagnosed T1D in LMICs, while Lilly and Novo Nordisk also support investments in infrastructure and equipment.

“Sanofi’s KiDS stands out as the only programme educating not just children and families, but also teachers and school staff,” according to the report.

Solutions

The pharmaceutical companies can scale up access and reach by ensuring that the diabetes treatments and technologies best suited to children are available where they are needed most, moving away from the donation-based models, and addressing affordability and product availability to facilitate the successful transition to government-owned type 1 diabetes care in LMICs, the report concludes.

“This way, all CYP, regardless of where they live, can have access to lifesaving diabetes care products.”

Image Credits: UC Davis health.