Diabetes Patients Want a Right to Participate in EML Decisions

James Elliott

The World Health Organization (WHO) has updated its Essential Medicines List (EML), a guide to nations about which drugs should be widely available. Analogue insulins, developed in the 1990s and the mainstay of type 1 diabetes treatment in high-income and many middle-income countries, are again excluded in favour of even older “human” insulin.

I believe this is a mistake.

Analogue insulins significantly improve average blood sugars and cut serious low blood sugar events by over a third. This lowers the risk for patients of “going low” and dying in their sleep–a great fear for many of us living with type 1 diabetes.

WHO received advice which rehashes arguments that there is “limited evidence” analogues are better. People arguing for analogues are occasionally represented as being unreasonable because the retail prices of analogues are often (but not always) higher than the 1980s’ era insulins they replace. Having survived on both “human” and “analogue” insulins, I am in no doubt that analogue insulin is better for the following reasons.

Analogue insulins are more predictable to use, and predictability is important when living with type 1 diabetes. Their action profiles allow for a more flexible eating schedule. Further, analogue insulins are more appropriate in low- and middle-income countries where supplies of blood glucose tests are less reliable and costs unaffordable, dietary options are more limited, and there are fewer emergency facilities if people have hypoglycemic reactions. Even in high income countries, there are occasional fatal events when people have to revert to 1980s insulin.

WHO’s decision to exclude analogue insulin from the EML was informed by advice as outlined in this Lancet Diabetes and Endocrinology editorial, “The bare essentials: ensuring affordable access to insulin”.

But why are people with diabetes being told to hope for “the bare essentials” and forcing them to have to fight for their right to equitable access to best treatment options? The insulin decision also appears inconsistent with other EML inclusions, such as newer and novel treatments of cancer. Cancer patients, and those with hepatitis C or HIV/AIDS have not had to settle for out-dated treatments.

The actual manufacturing costs of producing analogues and human insulin are comparable. But pharmaceutical companies have priced analogues much higher, and so WHO and those supporting the EML decision are unwittingly bending to the narrative that these medicines are breakthrough molecules. In reality, analogues have been on market for decades and analogue molecules like glargine (Lantus) or lispro (Humalog) are being replaced in high-income countries by newer insulins such as aspart (Fiasp).

WHO has the influence to persuade the powerful pharmaceutical corporates to lower prices of all insulins to reflect actual manufacturing costs, as was achieved for HIV/AIDS treatments. Furthermore, we believe people whose lives depend on insulin should participate in WHO meetings to revise the EML.

A rights-based approach to decisions that affect people’s lives and health necessarily has them participate. When it comes to type 1 diabetes decisions, patients should be listened to when they say, “we do not want an outdated form of insulin”.

James Elliott is a patient with type 1 diabetes and trustee of T1International, a patient-led non-profit dedicated to defending the human rights of people with type 1 diabetes, and founder of the #insulin4all campaign