Have you taken ozanimod, upadacitinib or risankizumab- share your experience

If you live with Ulcerative Colitis and have taken upadacitinib or ozanimod or live with Crohn’s and have taken risankizumab, we'd like to hear from you.  These medications aren’t yet widely available on the NHS, so it is likely that the treatments were prescribed as part of a clinical trial.

We've been asked by the National Institute for Health and Care Excellence (NICE) to share with them your experiences of taking these medicines. NICE is the body that decides which medicines can be prescribed on the NHS across England, Wales, and Northern Ireland.  Sharing your experiences will help them to decide whether these medicines are good value for money and give enough of a health benefit to be made available on the NHS across England, Wales, and Northern Ireland.  The Scottish Medicines Consortium (SMC) has this role for Scotland.

To be able to respond to their request, we want to know:

• What effect has the medicine has had on your symptoms?
• What effect has the medicine had on your everyday life?
• How does the medicine compare to other medicines you have taken for your Ulcerative Colitis or surgery?

We would also like to hear from people for whom all available medicines have not worked or are no longer working. 

• How does this impact your day-to-day life?
• What alternative treatment(s) have you been offered? 

CONTACT US

Please share your experiences by emailing policy@crohnsandcolitis.org.uk

Please make it clear which medicine you were prescribed in your email. If you would be interested in sharing your experience in person with the NICE Committee (via Zoom), please make a note of this in your email and we will get back in contact with you.

We may use anonymous quotes to help bring our submission to life but will not share personal details. We might also use the views you share to inform our submissions to other bodies that make decisions about the availability of medicines in other parts of the UK, such as the Scottish Medicines Consortium or All Wales Medicines Strategy Group. 

More about these medicines and this process

Upadacitinib is part of the class of drugs called Janus kinase (JAK) inhibitors. JAKs are enzymes that play a role in activating the body's immune response.

Ozanimod is in a class of medicines called sphingosine l-phosphate receptor modulators. It works by stopping a type of inflammatory cell, called lymphocytes, travelling to the bowel and causing inflammation. Ozanimod comes as a capsule that you swallow.

Risankizumab is a biologic medicine that targets a  chemical messenger called interleukin-23. By blocking interleukin-23 activity, it helps reduce inflammation. Risankizumab is given by injection under the skin.

In the UK, before a medicine or technology (e.g. diagnostic test or device) can be recommended for routine use by the NHS, it has to be judged for its clinical and cost-effectiveness. The UK organisations responsible for this include the National Institute of Health and Care Excellence (NICE), Scottish Medicines Consortium (SMC) and All Wales Medicines Strategy Group (AWMSG). Crohn's & Colitis UK ask for your experiences because they give decision-makers a real insight into what it's like to live with these conditions. Sharing your experiences can make a massive difference to the final decision about whether a medicine should be widely available for people across the UK. 

There have been significant changes to the way in which NICE makes decisions about medicines and technologies. In response to feedback from patient organisations like us, NICE has taken steps to make the process more flexible, fairer to access, and sped up the time it takes to consider certain medicines and technologies. For more information visit the NICE website.

For more information about this consultation, visit the NICE website,

Find out about biologics, biosimilars and other drug treatments. 

Read how we work to improve access to the most effective treatments for people with Crohn’s and Colitis.