Early detection: How type 1 diabetes screening can change lives

As CEO of JDRF UK, I take immense pride in the remarkable progress that we’ve made in type 1 diabetes research. As our understanding of type 1 diabetes deepens, it’s clear that the path to better health outcomes for everyone affected by this condition lies in early detection.

Cancer and dementia charities have long been calling for more advanced screening, as there’s clear evidence that early detection leads to better healthcare outcomes. We’re now calling for the same access to early detection for type 1 diabetes.

Type 1: the silent condition

Type 1 diabetes can be deceptive. Many of the typical signs and symptoms of type 1 can easily be attributed to other causes.

For most people with type 1 diabetes, their condition isn’t detected until 60-80% of their insulin-producing beta cells have been destroyed. This is why, in England and Wales, one in four children is diagnosed in diabetic ketoacidosis (DKA), a potentially fatal illness, which occurs when a severe lack of insulin means the body cannot use glucose for energy and starts to break down fat instead.

Over 80% of people diagnosed with type 1 have no family history of the condition so for many people the condition comes out of the blue, without warning.

The distress of DKA

DKA is a distressing and potentially life-threatening condition. In my role, I listen to the first-hand accounts of so many parents who have seen their children experience it. I’m always so grateful that people are prepared to share their stories. However, these stories are recounted with painstaking detail, etched into the memories of these parents and caregivers, and revisited time and again.

For children diagnosed with type 1 diabetes in DKA, their world suddenly becomes a frightening and unpredictable place. The experience can involve ambulance sirens, the anxiety of needles, and even their trusted parents and caregivers may appear overwhelmed – a truly terrifying situation for any young person.

DKA is traumatic. The experience stays with people and if we can do anything to prevent children and their families going through it, we should.

Reducing the strain on our healthcare services

Emergency hospital stays are not only distressing, but also expensive. When a person with type 1 needs to stay in hospital because they have developed DKA, the resources needed to safely stabilise their glucose levels are much higher than they would be if their condition was picked up in earlier stages of type 1, when they could start their journey with managing type 1 and getting used to managing insulin therapy in a planned way, with a smaller healthcare team, and much less need for overnight stays in hospital.

We are now seeing a growing body of evidence that shows if we can reduce the number of people experiencing DKA when they are diagnosed, we can reduce the numbers of people who are likely to need to have repeat hospital stays as a result of their type 1 too. A hugely important consideration for stretched healthcare services.

Education and preparation

By providing screening tests to identify people who are in the early stages of developing type 1 diabetes, we can provide these individuals, their families and support networks with information about the symptoms that indicate type 1 diabetes is progressing, and what to do when those signs show up. In one study, early detection combined with education lowered the chances of being diagnosed in DKA to less than 5%.

Understanding type 1 diabetes takes time. When we know who is already starting to develop the condition, we can make plans. We can talk about treatment choices and educational programmes ahead of time, so when insulin therapy begins, it won’t disrupt school or work as much.

We also know how important peer support is to people with type 1 diabetes because it offers empathy, shared experiences and practical advice. A recent study showed that parents and children would benefit from access to peer support if their child has tested positive. Early detection of type 1 allows us to facilitate this and introduce people developing type 1 to the wider community at the earliest stage.

Why is now the time to push for early detection of type 1?

We know that there’s an increase in the number of children getting diagnosed with type 1 each year. A recent international study collected data from multiple countries, including the UK, analysing information from nearly 40,000 young people diagnosed with type 1 during the COVID-19 pandemic.

The study described the increase in cases of type 1 as ‘substantial’. To help us meet the needs of increasing numbers of people being diagnosed with type 1, we need to find out who is developing the condition and provide treatments and support in the earliest stages.

Drugs to delay type 1

Until recently, our options for addressing the onset of type 1 diabetes were limited to educating people about its signs and symptoms. However, over the past 20 years, we’ve been championing and funding research aimed at slowing and ultimately preventing the development of type 1 diabetes.

As a result of this research, teplizumab, the world’s first disease-modifying drug for type 1 diabetes, received approval in the US last year. Teplizumab is proven to delay the onset of type 1 diabetes by up to three years. While three years may not seem like a significant amount of time, it can be transformative for a young person, potentially allowing them to navigate through puberty, complete their exams, and much more.

This three-year delay is just the beginning. Our ongoing research into immunotherapy and screening methods could one day render type 1 diabetes as inconsequential as polio or measles.

What are we calling for?

We’re calling for three key actions to make sure that early detection programmes benefit people with type 1.

• Firstly, we believe a targeted screening programme is necessary, free at the point of need, combined with education and support.
• Secondly, we want disease modifying treatments such as teplizumab made available on the NHS.
• Thirdly, people who are found to have two or more antibodies (indicating they will develop clinical type 1 diabetes) should be offered regular monitoring and support to ensure a smooth transition to insulin therapy, avoiding DKA at diagnosis.

A moral obligation and a cost-effective solution

By implementing accessible screening programmes and raising awareness about type 1 diabetes, the lives of countless people, particularly children, could be transformed.

With groundbreaking advancements in disease-modifying drugs like teplizumab, we stand at the threshold of managing the condition more effectively than ever before.

Embracing early detection is not only a moral obligation but also a cost-effective solution, which will reduce the strain on healthcare services and lead to better health outcomes for those at risk. This is why JDRF will be advocating for early detection, for better health, and for a brighter, more sustainable future for everyone with type 1 diabetes.