Type 1 Diabetes Screening (Children)

I beg to move,

That leave be given to bring in a Bill to make provision for a national programme of screening for type 1 diabetes in children; and for connected purposes.

We have all just returned from the Easter recess, and I am sure that, given the number of chocolate eggs that have been consumed, many people will have been told, “Not too much chocolate, or you will get diabetes.” While they are made in jest, comments of that kind reinforce the problem caused by the misunderstanding of diabetes. About 350,000 people in the UK—including me—currently live with type 1 diabetes, and 85% of type 1 diagnoses occur in people, such as me, with no known family connection with it.

Let us take a step back. What is type 1 diabetes? It is an autoimmune condition whereby one’s body, mainly one’s pancreas, no longer makes insulin. Without insulin, the body cannot use glucose for food and thus for energy. When people with type 1 eat, the glucose from their food stays in their bloodstream, but then their body seeks to burn energy and finds an alternative source, namely muscle or fat. The by-products of that are ketones, which are acidic and poison the body. Left untreated, people can enter a state of DKA—diabetic ketoacidosis—which can prove fatal, and sadly has done so in some cases. A patient has done nothing to cause type 1; likewise, there is no cure, just management and treatment of the condition. It is essential that we all recognise the signs of type 1. Although the four Ts—thirst, toilet, tiredness and thinning—are a crucial tool, ultimately these are signs that the condition has progressed and is under way.

There are three distinct stages to the development of type 1, but before I run through them, I will pivot to explain antibodies and autoantibodies, because they are essential to understanding the development of type 1. Antibodies are a protein that a person’s immune system produces when it detects a threat. The problem here is that, with type 1, an individual’s immune system makes these antibodies in response not to a threat, but to their own insulin-producing beta cells. These are called islet autoantibodies, and scientists can test for them to see if a person has early-stage type 1.

Let us go back to the three stages. Stage 1 is where there are two or more autoantibodies present, but with normal blood glucose levels. In stage 2, multiple autoantibodies are present and blood glucose levels are abnormal, but there are no symptoms. Finally, in stage 3, known as persistent islet autoimmunity, blood glucose is elevated and the person is typically symptomatic. That means high blood sugars, thirstiness, urinating more frequently, unexplained weight loss, tiredness and blurred vision. This is the stage at which most people are diagnosed as having type 1.

Although it is difficult to give a precise number, a study found that about 38% of those newly diagnosed between 2015 to 2020 were in a state of diabetic ketoacidosis, and 44% of them were under five years old. No one should underestimate how traumatic it is to be diagnosed, let alone when someone is in a state of DKA, which requires hospitalisation and emergency treatment. A US study found that being diagnosed while presenting with DKA was associated with significantly greater use of health services and potentially greater healthcare costs in the long term.

Armed with that knowledge, it is clear that we should aim to identify the condition before people become symptomatic in stage 3. That would mean that individuals are given an opportunity to get on to a trial to delay the disease, which is a point I will come back to. Furthermore, early identification gives families the time to prepare emotionally and learn how to manage the condition—hence my call today for a national screening programme for children.

Currently, there is no comprehensive NHS screening to identify individuals in the early stages of type 1, despite compelling evidence for it. International programmes, such as those in Germany, Italy, Australia and the US, demonstrate that comprehensive screening, paired with public awareness campaigns and psychological support, can successfully reduce DKA rates and improve long-term health outcomes. As I mentioned, there is also a pipeline of disease-modifying drugs emerging, which means that future generations identified as having markers for type 1 diabetes will be able to delay its development. Teplizumab—a tricky name to say—is one such drug that can, in at least half of people, delay the onset of diabetes by about two to three years. Designed for individuals aged eight years and over who have stage 2 type 1, it works by disabling the immune cells that attack the pancreas and destroy the insulin-producing beta cells, allowing the body to maintain its own insulin production for longer, so early identification is really important.

So what next? Well, adoption of any screening programme requires the Wilson and Jungner criteria, set in 1968, to be met. They look at the viability, effectiveness and appropriateness of any screening programme. Type 1 meets some of those because it is an important health problem, it has a recognised latent or early symptomatic stage, and the development of the condition is adequately understood, but further work is required to meet them all. For example, the target population for screening has not yet been clearly defined, but I hope it will be soon.

Currently, we are looking at the appropriate ages at which to carry out the testing. Although there are numerous opportunities for screening throughout a person’s lifetime, the early years are critical, given the possibility of becoming symptomatic in childhood. If we were to screen children at the age of three to four, we might catch 40% of cases. However, three periods of testing between the ages of two to four, six to eight and 10 to 15 would increase the number of childhood type 1 cases caught to around 80%, which would ultimately improve the efficacy of the screening and help meet the criteria.

While a final determination is being made on the correct ages at which to screen children, we are working on other questions. How can we embed this into clinical care and ensure that the follow-up programme is successful, as it may go on for years? Once we are aware of a child presenting—perhaps in stage 1 or stage 2—how do we keep in contact? If they test at the age of three, how do we make sure that they come back for the repeat tests? How do we make it clear that one negative test does not mean that someone is free of type 1? For those for whom it is coming, how do we make sure that they have the support and training to be ready?

We also have to firmly establish a clear balance between the benefits and the harms. I have already described some of the benefits, which include reducing DKA diagnosis and the long-term benefits that follow. On harm, we have to think about the behavioural and anxiety changes, because we need to ensure that psychological support is available for patients who know that a condition is coming. Sometimes ignorance is bliss, and living with knowledge of an impending condition could be overwhelming, but knowing the signs and preparing is vital. We need to make sure that we can offer treatments that work for all, and particularly for younger people.

There is clearly some interest in introducing a screening programme in the UK, because the ELSA study, which is funded by Diabetes UK and Breakthrough T1D, offers children aged two to 17 a simple finger-prick blood test to determine their risk of developing type 1. The study—I emphasise that it is a study—is currently open to families in England, Scotland, Wales and Northern Ireland, with over 20,000 children having been screened so far, but it is really important that we move from studies to a national screening programme. At the moment, ELSA is available only for the early adopters—those who come forward to seek screening—which explains why nearly 40% of the participants are relatives of people with type 1. We need to make sure that any screening system is universal, so that we have a fair application that does not discriminate based on background, wealth or ethnicity.

For all the reasons I have set out, I am calling for a national screening programme. Although type 1 is an unpredictable and relentless condition to live with, I hope that within the next few years we can make the diagnosis of this condition far less traumatic, and give families and patients the skills and tools to live with type 1. I hope that one day we can cure this condition. Until then, if we can diagnose earlier and delay the onset to allow more care-free childhood years, we might just make people’s journey with type 1 that little bit better.

That Sarah Bool, Tom Gordon, Josh Newbury, Charlie Dewhirst, Mr Andrew Snowdon, Rebecca Smith and Jim Shannon present the Bill.

Sarah Bool accordingly presented the Bill.