I was diagnosed with type 1 diabetes five years ago at the age of 39 after a routine blood test. It came out of the blue and I was in shock. Before that, I felt like I was pretty immortal.
About a week after my diagnosis, I started thinking about how I could be more proactive about it. The technology for diabetes management has come on leaps and bounds, but the go-to treatment is still taking insulin. This hasn’t really changed in the last hundred years.
I’m part of a medical regiment in the army, so I work with clinicians all the time. And at the end of the day, you don’t get any advances in healthcare and medicine without clinical trials.
I decided to get involved in research
I went hunting around the internet trying to find out where clinical trials were being held. I contacted the diabetes unit at University Hospital Wales in Cardiff. I signed up there to see whether they had any trials I might be eligible for.
I looked at clinical trials in two ways. First, I thought if I signed up, I’d have a second clinical team looking after me, especially in those early days. I also realised that a clinical trial might not help me directly, but in the years to come, it may lead to fundamental change in the management of diabetes. It could benefit me going forward, and everyone else.
What taking part actually involves
So far, I’ve taken part in six clinical trials. The trials are random double-blind. This means neither myself or the researchers know who is getting active treatment. This protects the integrity of the clinical trial.
There are usually pre-trial baseline blood tests. After that, how often they take blood depends on the study and what they’re looking for. Then there are maintenance tests throughout the trial.
I’d usually complete a questionnaire each time I attended, just to make sure that my health was up to scratch.
Balancing the immune cells behind type 1
One of the trials is focused on helping keep the right balance of immune cells. This is part of the Type 1 Diabetes Grand Challenge. I was approached by the clinical trials team as they thought I could be eligible, so I went for some pre-screening tests. I was accepted onto the trial and went every fortnight for blood tests. For around six of those sessions, I also had a drug infusion for about an hour.
One group of people received abatacept, which can stop immune cells from mistakenly attacking beta cells (the cells that regulate blood glucose). Another group received abatacept with another medicine, called IL-2, to see whether it can help to keep the right balance of cells.
As part of the study, they used radioisotope (a chemical element) to track where the immune cells are in the body and when and how they are doing their job.
Some parts are uncomfortable, but that’s healthcare
I spent six weeks on heavy water, called deuterium. It can be used as a non-radioactive tracer in the body, often used in cancer research to monitor how immune cells respond to different therapies. It was a very expensive water costing around £70,000 or more for six weeks.
My main hope for this trial is actually quite outlandish, but possibly achievable through small steps. I hope the clinical team can identify errant cells and suppress or destroy them without adversely impacting the general immune system.
For another trial, I had to have a blister formed so they could take fine needle aspirations of my lymph nodes. It was uncomfortable, but injecting daily can be uncomfortable. It’s part and parcel of healthcare.
Fitting trials around my everyday life
As well as my job in the army, I also work shifts for the local health board on a clinical level. I found the trials fitted well around my life. For the more intensive clinical trials that I joined, I’d have to go in every fortnight. But it’s close to where I live and I’d only need to go in for two hours at a time. It wasn’t really disruptive to my life.
You get to know the research team well. They’d always ask me how I was doing and whether they could help with my day-to-day diabetes management. Through the continued monitoring of this second clinical team, I’ve been able to adjust my insulin regime better. It’s a very caring approach.
Find out what’s involved, then go for it
My advice to anyone thinking about getting involved with a trial is to find out as much information about it as you can. Speak to the clinical team about what it’s going to involve, how much time you’re going to have to devote to it and what interventions are going to be part of it.
Some trials are less intensive than others. Understanding that upfront can help settle your mind before you agree to get involved.
Apart from that, I’d say jump right in.
