The challenges facing UC patients

Ulcerative colitis is a debilitating inflammatory bowel disease affecting approximately 1 in 500 people in the UK. Dr. Peter Irving, UK Gastroenterologist speaks to Galapagos Medical Advisor, Claire Hamilton about the main challenges facing patients with UC in the UK today. 

Claire: Let’s start with what is UC and what are the main symptoms?  

Peter: Well, UC is a chronic inflammatory condition that affects the colon. It is partly genetic in nature and partly environmental. It can really present at any age, but it tends to occur first in the teenage years, peaking in the first few decades of life, but there are later peaks in people in their 50s and 60s.

It causes a variety of symptoms, but mainly rectal bleeding, diarrhoea and urgency. I think urgency is probably, in some ways, the worst of those symptoms because it can result in incontinence and that’s a very, very disabling symptom. The time of presentation is often a very stressful time. People may have had symptoms for a long time, even years before getting a diagnosis. Depending on what age they are, people might think they’ve got bowel cancer and, in fact, the diagnosis of UC can almost come as a bit of a relief in some ways.  

Claire: In terms of quality of life, what’s it like for someone living with UC?

Peter: Well that depends how well we treat it or are able to treat it. If you looked at the rates of depression and anxiety in people with inflammatory bowel disease, then they’re higher than in the general population for understandable reasons. If you think about the effects on daily living, on people’s ability to attend school, on people’s attendance at work when they have ulcerative colitis, on their ability to go out, see their friends and visit restaurants, colitis has a sometimes devastating effect on people’s quality of life.  

I think sometimes patients hope that we can cure ulcerative colitis and we can’t. But, like many other medical conditions, we can manage it. I think what many of them do want, is treatment that controls their disease to the point that they are able to have good quality of life and where the risks of the medication they’re taking are balanced appropriately with the effectiveness of the drugs that they’re taking.   

Claire: And what are the biggest challenges facing the patients in the UK?

Peter: I think right now it’s probably dealing with COVID. Some patients have to come to hospital to have their medications as infusions, and those infusion services potentially were disrupted. Patients were also worried about coming to hospital, and were told to stay at home, and possibly even being told to shield. There’s obviously huge uncertainty and anxiety in people with chronic disease and I think many have found the COVID pandemic particularly challenging.  

If we put COVID to one side, living with the uncertainty of having a flare up can be challenging and if you do have active disease then there is a significant impact on your life, on your relationships and on your work. Unfortunately, there is a group of people where the medication that we use is not effective and their disease is poorly controlled. For these patients surgery can be required.

Claire: For you specifically Peter, what are your biggest concerns about treating patients?

Peter: I think my concerns are based around the fact that we have a growing population of patients with inflammatory bowel disease. People are living longer and so we have a compounding prevalence. So there are challenges in relation to the healthcare system and our ability to cope with all these patients. Then there are challenges posed by the drugs that are available to us because we don’t have the perfect drug yet and there are some patients, that despite an increasing number of treatment options, we still can’t get on top of their disease.  

Claire: What do you think about the information on UC that’s available to patients?

Peter: The abundance of information that is available on the internet can be a problem. The majority of it is completely unregulated and I think it can be tough, particularly if you have a new diagnosis, to be bombarded with information. Some of it is of poor quality, some of it is fantasy, but a lot of it’s very good. I think it’s tough for people to be able to know what is what. 

Claire: How do you think the doctors reading this can be encouraged to help patients to talk more openly about their condition and get the right information?

Peter: Try to find time to listen. I think one has to accept that time is a very limited resource in the NHS and so that is a challenge. Often you will be thinking about that time pressure when you’re seeing a patient knowing how many patients are waiting or how many more patients you have to see and yet one has to do one’s best to give the patient time.  

I think that we have to remember to allow patients to lead some of the conversation, allowing them to talk about what they want to talk about but also using questions addressing some of those areas which we wouldn’t typically address during a medical conversation because often we’re very symptom focussed.  

Claire: And that brings me on quite nicely to the final question, as a partnership, how can the Pharma Industry continue to work to improve the lives of patients with UC?

Peter: It’s undoubtedly true that the interaction with pharma companies can be beneficial for patients, not just in the provision of new treatments, which of course is an essential part of care of UC, but the collaborations between researchers and industry. They allow us to explore how drugs can be used better in individuals, but also how we can establish better pathways of treatment.  Treating to target is something that’s been talked about a lot over recent years.  And some of the trials that have been done in that area have been funded by pharma companies and, to be honest, they wouldn’t be done otherwise. I think it’s really important for us to continue to work in a symbiotic way to improve care for patients with UC over the years.  

Claire: Thank you, Peter. I really appreciate your time.  

Peter: Pleasure.   

This conversation has highlighted 

·       There are unmet need for patients: both newly diagnosed and those living with UC

·       COVID has introduced additional challenges for UC patients

·       the importance of making good quality information easily accessible to them

·       that for patients regaining their pre-diagnosis quality of life is a key goal.

There is a pivotal role for the pharmaceutical industry and companies such as Galapagos to play as a partner to physicians, to develop new treatments that can bring new options to patients currently suffering from the symptoms of UC.