Louise Hunt, Young Crohn’s
Imagine this situation, you get diagnosed with a lifelong medical condition and while specialised doctors can treat you when you are symptomatic, they cannot predict how severe the condition could or will get for you. It’s a scary prospect and this is where I was as an inflammatory bowel disease (IBD) patient almost a decade ago.
A significant period of my first six months of learning to live with Crohn’s disease – one of the main forms of IBD – was spent wrapping my head around just how much this was going to impact on my once healthy life. I can remember the frustration I felt when I found it hard to plan more than a couple months ahead and how I had to adjust to a new ‘normal’.
Statistics and ‘worse case scenarios’ were thrown my way and that did not comfort me in accepting my illness. No medical professional could predict or plan how my immune system would respond to the medications, stress, lifestyle changes or indeed adaptations I made to my diet; because IBD was still so unpredictable.
Things have moved on in the last 10 years, with increasing recognition that treating all patients in an identical way, without considering the future path of their disease (their “prognosis”) does not lead to the best outcomes. When I was diagnosed, I was treated in the standard way – the step-up approach – which means first being given steroids, and then waiting to see if they work. They didn’t, so I progressed to 5-ASA and then when that didn’t work biologics, which were effective. My experience since then hasn’t been great – unpleasant hospital admissions, multiple surgeries. It has left me wondering, had I gone straight on to biologic therapy, and achieved control of my disease early on, could I have avoided those admissions and maybe the surgery?
Predicting disease course
While clinical pathways that tell doctors how to approach to IBD treatment have been improved throughout the years as new medications have been discovered, tools for doctors to predict disease course and prescribe accordingly have remained unavailable. To make things better for patients, many doctors think that giving those at risk of more severe disease stronger medication first (the ‘top-down’ approach) is vital, which has given rise to a hunt for predictive ”prognostic” biomarkers.
One such biomarker was identified by clinical immunologist Kenneth Smith’s team, at the University of Cambridge. They found a genetic signature relating to ‘T-cell exhaustion’, a kind of immune dysfunction, which can affect how bad your IBD is. In IBD, where the body is in effect attacking itself, each person’s experience is dependent on the state of their own immune system. T-cell exhaustion is important because when in this state, the immune system is weakened, meaning less inflammation and a milder disease.
The potential of this gene signature, and evidence that it can accurately predict long-term disease outcome at the time of IBD diagnosis, led to the “spinning out” of start-up company PredictImmune from the University of Cambridge in 2017 to translate the biomarker into a prognostic blood test suitable for clinical use. Could this test truly answer the burning question: how bad will an individual patient’s IBD become?
The science – why the test matters
The blood test, called PredictSURE IBD, can tell you whether you are more or less likely to suffer multiple flare ups in the first year after diagnosis. Currently, standard treatment pathways are ‘one size fits all’ which can either under treat or over treat patients, as their disease course is unknown. This test could take away a lot of the guessing game that surrounds newly diagnosed patients with Crohn’s disease, leading to appropriate treatments, improved outcomes and improved quality of life. The test is already approved for use in the UK, but not yet available on the NHS, which is the ultimate goal.