Nick and Claire both have Crohn's Disease. When they took part in the ustekinumab (Stelara) drug trial, which started in September 2012, it transformed their health.
When Nick was very ill in the early 2000s, even walking to the newspaper shop was a struggle and all he could do when he got back was lie down. Two severe flare-ups left him in hospital.
Claire also had a rough patch before the trial. She was signed off work, was feeling really low, and had symptoms of bad arthritis.
Within a couple of months of starting the drug, however, both Nick and Claire noticed a great improvement to their health.
By spring Nick was beginning to improve quite drastically. He was going on walking holidays with his wife and long walks with his brother.
Crohn’s & Colitis UK was seeking patients to provide their experience with the drug. It was a call-out for patient evidence that would feed into the drug’s National Institute for Health and Care Excellence (NICE) appraisal process.
After submitting their testimony, they were asked to be patient experts at the appraisal.
They each prepared a statement using a questionnaire, which asked what it was like to live with IBD, what their experience of treatments had been in the past and the benefits of the trial.
At the ustekinumab hearing, as well as evidence from the drug company, there were submissions from a number of patient and professional associations, including Crohn’s & Colitis UK and the British Society of Gastroenterology.
The pair’s efforts paid off and they received the excellent news that ustekinumab would be approved by NICE to treat Crohn’s Disease on the NHS in England and Wales. It has also now been approved north of the border by the Scottish Medicines Consortium.
This is part of an article from the Spring 2018 edition of Connect magazine . If you'd like to read the full article, and also enjoy all of the other features in Connect, become a member.
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