A window of opportunity to take part in research and stop Type 1 diabetes in its tracks
Have you, or someone you know, just been diagnosed with Type 1 diabetes? It’s an overwhelming and scary time. But there might also be a unique opportunity. In the first 100 days after your diagnosis, you could be eligible to take part in a clinical trial testing a new type of treatment, called an immunotherapy.
This is what expert Professor Colin Dayan, a leading scientist and diabetes doctor, has to say to you.
“I know this is a really difficult time. You have Type 1 diabetes and that means the immune system is damaging your insulin-producing beta cells, and it’s going to carry on. But at the moment you probably have around 10-20% of your beta cells left. And we know that at this stage, your blood sugars are easier to control and your risk of hypos is much less than it will be in five years’ time, when you’ll have lost those last remaining beta cells.
Although we don’t know yet know how to grow beta cells back again, we’re trying to preserve them for as long as possible, by testing drugs in clinical trials that hope to slow or stop the immune system causing damage. And even if we can’t preserve them forever, every year that you keep your beta cells, you’ll find your blood sugar control is easier.
That means you’ll be storing up good things for the future. We know from research studies that if your blood sugars are in the safe ‘target range’, it can protect you for 20 to 30 years afterwards. And the easiest way of doing that is when your body is helping you by still producing some of its own insulin, as it is now.
Now, a clinical trial is different from a treatment. If we knew something absolutely worked we wouldn’t be doing a trial, we’d just be giving it to you. However we wouldn’t get to this point if there wasn’t evidence to suggest that the treatment we’re looking at could work.
In most trials, you also have to take into account that you might be in the placebo group, which means you might get a ‘dummy drug’ and not actually get the treatment. And you might think well, why would I bother? But in most trials, you’ll have a 2 out of 3 chance of getting the active treatment. And even if you get the placebo, the evidence shows that you get more time to talk about your diabetes with doctors and nurses, you learn more, and generally you get better support.
And the last point to bear in mind is, you having Type 1 diabetes means there’s around a 1 in 20 chance that your child or brother or sister may also get it. By taking part in research today, if that does happens in 10 or 20 years’ time, you’d like to know that there was a better treatment for them. And everything you do now is going to increase that chance of it being ready.”
Scientists need your help to find the next breakthrough
In order for new and better treatments to reach people with Type 1 diabetes, multiple clinical trials are needed. Each trial involves more and more people, so progress can’t happen without people with Type 1 diabetes taking part.
To find out more about opportunities to take part in immunotherapy research, head to the Type 1 diabetes Immunotherapy Consortium. Right now, a trial – called USTEKID – is recruiting young people within 100 days of their diagnosis to test a medication already used to treat psoriasis. It’s recruiting in eight different locations across the country, with more in the pipeline.
Amy Brown was diagnosed with Type 1 diabetes when she was 12 years old. She’s now 16 and is helping USTEKID scientists to shape the trial for children and teenagers with Type 1. She told us:
“If I had known about a trial like this I would have jumped at the opportunity to take part. It would be great to see how different managing my diabetes would be now. Being a teenager with diabetes is hard enough and having something to make it more manageable would be easier for me and put my family’s minds at ease. Trials like this could help a young person to live a more independent life, just moving on to college or university without the constant worry of controlling blood sugars.
“Knowing that I could not only benefit my life, but one day could also help many other Type 1 diabetics would be amazing.”