WHO: Real data, not ‘guess’ needed for equal access to diabetes care

Ensuring that all people diagnosed with diabetes have access to equitable, comprehensive, affordable and quality management cannot be done without the use of data, according to a World Health Organisation expert.

Bente Mikkelsen is the director of the non-communicable disease department at the World Health Organization (WHO) headquarters. She spoke to EURACTIV’s health reporter Giedre Peseckyte.

What should be done to prevent new diabetes cases?

In a nutshell, reducing the risk factors and improving the prevention. Governments should facilitate and support access to healthy diets and physical activity and people should be informed about the importance of dietary habits and healthy lifestyles.

But is there enough awareness in society? How much do people know about the disease?

Diabetes is one of the oldest diseases but there’s still a lot of misconception about its nature. For many it seems very simplistic, so people don’t really understand the multi-organ disease that diabetes is.

Over time, diabetes can damage the heart, blood vessels, eyes, kidneys, and nerves. Diabetes has an impact on the eyes – it is a major cause of blindness. Diabetes also impacts the cardiovascular system with an increased risk of heart attacks and strokes. Impaired blood flow combined with nerve damage in the feet increases the risk of foot ulcers and limb amputation.

There is still a need for awareness-building in all countries. WHO and partners make an effort to increase awareness globally, therein Europe, through the Global Diabetes Compact, the Global Diabetes Compact Forum with its growing numbers of partners and also through People Living with Diabetes.

Beyond these increasing numbers, are there more cases that are just simply undiagnosed?

When you look at the lack of diagnosis worldwide, four out of five adults with undiagnosed diabetes live in low and middle-income countries. The recently released IDF data estimate that around one-third of people living with diabetes in Europe are undiagnosed.

How important is it to diagnose diabetes early then and how can this be ensured?

It’s not possible to give evidence on exactly how early the diagnosis should be in order to measure the improvement of outcomes. This is one of the gaps in research.

However, earlier diagnoses of people with type 1 diabetes should be promoted worldwide due to prevent deaths of delayed diagnoses and high prevalence of diabetic ketoacidosis at diagnosis.

Talking about patient needs, there are many multiple treatments available for diabetes. But are they reaching patients and how different is the situation in different countries?

The number of people living with diabetes quadrupled since 1980 and we know it is on the rise. At the moment, we have more than 420 million people living with diabetes and it is estimated there will be 643 million in 2030, as many as 784 million in 2045.

This increase is also combined with an increase in premature mortality, meaning dying before 70 years of age. When you look at the lack of access to medicines and technology, it is estimated that 50% of the people with type 2 diabetes who need insulin don’t get that on a regular basis.

And then, only a small extent of the diabetes diagnosis, screening and care is included in the primary health care system. This is too weak.

That is why we are very grateful for the World Health Assembly resolution on Diabetes this year that commit all member States to give Diabetes priority and for WHO to work on accessibility and affordability for insulin and other Diabetes medicines and medical devices.

Did the pandemic have an impact on this too?

During the COVID-19 pandemic, diabetes patients were one of the groups at most risk for getting severely ill and dying. We conducted a survey that showed 60% of countries had partially or fully disrupted health care services for the treatment of diabetes and diabetes-related complications.

What about registries for diabetes? This is being discussed a lot and countries seem to have a different take on this. 

Data is important and we need data to take action. What we are looking at, in general, is facility-based data and data included in the health information system. At the moment, we have very scattered data.

I think we will, in the coming years, discuss this more intensively as we develop tools for collecting facility-based data for all diseases, but also linked to the global diabetes targets that we have suggested for the WHO member states to discuss this year.

So what should a diabetes register look like?

This is something we need to come back to. The format should accommodate various settings. And I look forward to having this discussion with our Global Technical Advisory Group on diabetes that will give advice to WHO.

But I would like to say that without data, it’s very difficult to build accountability and also to help ensure that diabetes is diagnosed, treated and controlled.

Our vision is to reduce the risk of diabetes, and also to ensure that all people who are diagnosed with diabetes have access to equitable, comprehensive, affordable and quality management. And to reach this target, we need to measure, we cannot only guess.

There is a globally agreed target to halt the rise of diabetes and obesity by 2025. What should be done in order to do so? 

Halting the rise in obesity and diabetes is possible. Partnerships between governments and civil societies and all non state actors will be key to supporting policy implementation necessary to halt the rise. The recommended policy actions for preventing obesity and diabetes are aimed at increasing physical activity and uptake of a healthy diet.

We need academicians, we need non-governmental organizations, we need people living with diabetes, also stepping up and helping us to, to some extent, change the language. We also need to push on education such as speaking of diets in schools and kindergartens.

[Edited by Gerardo Fortuna/Zoran Radosavljevic]