Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD), affecting more than 300,000 people in the UK. New prevalence figures emerging from a number of studies indicate the actual number could be significantly higher (one study at the University of Edinburgh has revealed that one in 125 people in Edinburgh have Crohn’s or Colitis). Yet they are largely hidden diseases that cause stigma, fear and isolation.

Because of this, Crohn’s & Colitis UK are always looking for opportunities to raise awareness of these conditions and the needs of people with them. Making a submission to the Scottish Medicines Consortium – part of Healthcare Improvement Scotland – when a new drug is being appraised for routine use within the NHS in Scotland is a vital part of what we do to support those with Crohn’s and Colitis.

Our role as a patient group is to ensure SMC Committee members consider the difference that potential treatments may make to the lives of people with Crohn’s and Colitis and their carers. Medicines are vital to managing and treating the symptoms of Crohn’s and Colitis, as well as extra-intestinal symptoms and complications. Being able to access the widest and most innovative range of evidenced-based drug treatments is therefore fundamental.

Plenty of support and advice is provided by SMC’s public involvement team, who work in partnership with you throughout the submission process. They can help with developing the written patient group submission and provide support in participating at the committee meeting. The team is very approachable, and I would encourage any patient group with an interest in access to new medicines in Scotland to get in touch with them.

We gather a lot of the evidence for our submissions from patients via our website and social media channels. Those who respond tend to be keen to actively participate and contribute to decisions about future treatments and new technologies. For me, what makes a good patient group submission are the ‘nuggets’ of reality that we and those we support can provide. Everyone knows someone living with Crohn’s or Colitis, yet how much do most of us understand about the impact of these conditions on people’s education, work and relationships?

These are lifelong diseases with lifetime medical costs comparable to other major diseases such as diabetes and cancer.  It costs the NHS two to three times more to treat people experiencing a flare up of their condition compared to those in remission. Careful use of patient quotes to illustrate factors like these, the true impact of these conditions on people’s daily lives and the difference a new medicine could make if it was routinely available in NHSScotland are what really makes the difference in a good patient group submission.

However, our two most recent submissions to SMC had different outcomes. Darvadstrocel (Alofisel) is an innovative stem cell technology to treat complex perianal fistulas. Perinal fistulas can be extremely debilitating, causing intense pain and discomfort and meaning even simple activities such as sitting down can be difficult. Unfortunately SMC did not recommend this medicine because the evidence from the manufacturer on the cost-effectiveness was not deemed strong enough to merit routine use within the NHS. Nevertheless I believe that our submission was strong in terms of highlighting the huge unmet need for patients in this area and the sometimes gruelling nature of living with fistulae.

More recently we made a submission on new oral drug tofacitinib (Xeljanz) for ulcerative colitis. This was accepted for use in Scotland. For some people with ulcerative colitis, treatment options run out or they may carry on with a limited quality of life when they lose response to medicines. For them, tofacitinib offers fresh hope, particularly for those wishing to avoid or delay surgery to form a stoma or pouch (for example to complete studies or have children). I believe that the testimonies within our submission helped to make the case for this new option clearer.

As Crohn’s & Colitis UK develop our new Patient Engagement Strategy, we will be asking all those who respond to calls for evidence around Health Technology Appraisals to join our Patient Voices Network. I hope that in future members of this network will have the opportunity to influence and contribute to decisions about medicines.

By taking an active role in engaging with bodies like SMC that regulate the availability of treatments on the NHS, I believe we are punching above our weight as a patient group, harnessing the powerful and valuable voices of patients and their carers to make a real difference for the future.

Nancy Greig is the Health Service Project Manager for Crohn’s & Colitis UK.

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