Early T1D clinics: A new standard of care

“Type 1 diabetes is one of the hardest conditions to live with on a day-to-day basis. People often describe it as relentless. If I can reduce that burden in any way, it feels like a really meaningful part of my role. I support children from diagnosis to the moment we hand them over to adult services. My job is to hand them across without any of the problems we traditionally associate with long-term type 1 diabetes – we really take the long view of the condition.

Early stage T1D

Type 1 diabetes is an autoimmune condition, meaning the body attacks itself – specifically, the cells of the pancreas that produce insulin. That attack doesn’t happen in a single moment. It’s not a ‘Big Bang’ – it’s a continuum. You gradually lose the beta cells that produce insulin until your blood sugars rise, and you need insulin therapy.

We can now identify people who don’t yet need insulin but do have that autoimmune process underway – they have antibody markers in their blood. That’s what we define as early-stage T1D. People whose immune system is attacking the pancreas, but they may still have normal or slightly ‘wobbly’ blood sugars. Understanding this stage is crucial because it opens up opportunities to intervene earlier, support families earlier and, in some cases, delay the need for insulin.

The early T1D clinic

In Birmingham Children’s Hospital, I run an early type 1 clinic. Families attend in person and virtually from all over England and Wales.

It’s a shared-care model. I link closely with each family’s local diabetes unit, who support with blood tests and help maintain that essential relationship for when insulin therapy is required.

The reason this clinic exists at all is because of a study I’m lead paediatrician for: ELSA (Early Surveillance for Autoimmune Diabetes), which is led by Professor Parth Narendran based at University of Birmingham. ELSA has screened over 40,000 children for the antibodies linked to early-stage diabetes. Screening created a new group of young people with type 1 diabetes: those who do not yet need insulin. There wasn’t a natural clinical home for them, so we built one in Birmingham. Anyone with early-stage T1D can be referred, so long as they have two or more antibodies and are not yet on insulin.

Why finding T1D early matters

ELSA began as a screening study, asking children to give a small blood spot sample, much like the newborn heel-prick test, which is checked for antibodies. If positive, a second blood test is done at a local ELSA hospital. People with two or more antibodies go on to have a glucose challenge test, so we understand which stage they are at.

The programme now screens children aged 2 to 17, covers ongoing monitoring, and includes young people with one antibody because some of them will go on to develop more. There are a number of reasons that finding T1D early is vital:

• Around 40% of children in the UK are still diagnosed in an emergency known as diabetic ketoacidosis, which carries real risk. Screening reduces that risk to under 5%. That is a phenomenal reduction.
• We know that children identified early have better long-term glucose levels for at least five years after diagnosis, which is tightly linked to the risk of future complications.
• We now have disease-modifying therapies emerging – treatments that can delay the need to replace your own insulin.
• We know that early identification gives families a far softer landing. They can take in information more easily because they are not stressed about an acutely unwell child, understand what to expect, and be supported without crisis striking.

Teplizumab: a new era of treatment

Teplizumab is a disease-modifying therapy that can delay the need for insulin by up to three years. For families I look after, that is a huge deal. The treatment is given as a 30-minute IV infusion for 14 days. It’s ‘one-and-done’ in that sense, though we monitor carefully before, during and after.

In our clinic, we were able to offer teplizumab to three young people so far. Our first patient was the first in the UK to receive it in clinical care. The families were incredible. They were fully engaged, aware of the pros and cons, and absolutely focused on giving their child the best chance of delaying insulin.

Offering it not only helped those children, it helped other clinicians feel confident too. Sometimes someone simply has to go first.

This experience also highlighted something important. Breakthroughs only matter if people can access them. As these new therapies emerge, we must consider who is able to benefit and how we design services that truly serve every family.

Health equity

We know that deprivation is one of the strongest predictors of presenting in an emergency at diagnosis. Our job as clinicians, researchers, funders, policymakers is to keep equity in mind right from the start. The NHS is uniquely placed to level the playing field if we think carefully about implementation. Guidance can help ensure access is fair, rather than dependent on which region you happen to live in.

And while a 14-day hospital-based therapy like teplizumab won’t be accessible to everyone, there are new treatments coming along – tablets, monthly injections, things you can do at home – that could help reduce inequality rather than widen it. But it won’t happen automatically. We have to actively think about access – it won’t just ‘bottom out’ on its own.

Looking ahead

In five years’ time, success to me would be seeing a designated early type 1 clinic in most paediatric diabetes units across the country. I also fully expect that within five years we’ll be routinely offering children a disease-modifying therapy as part of standard care. If a young person is identified, I imagine the first conversation being: ‘Here’s a drug you might want to think about. The idea that we could offer something that meaningfully delays the onset of type 1 would have been unimaginable a decade ago, and yet that’s exactly where the field is heading’.”