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.
What it does to you mentally is sometimes almost as bad as what it does to you physically. You stop having a social life. It was frustrating, not doing any of the activities my wife and I used to be able to. And not being able to look after my kids in the same way that my friends were doing was hugely frustrating.
Nick
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.
To go from even the smallest things being a struggle to being able to leave the house and actually do my job was amazing. I went back to work after a couple of months, when I started to feel the effects of the drug, and continued to feel good for the year I stayed on it
Claire
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.
I was convinced that this was something I could do to say thank you to all the people who’d looked after me.
Nick
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.
I felt the patient voice was being heard. There was a lot to go through on the day – presentations about statistics and finance – but we were encouraged to talk. Ultimately, if people don’t speak out then the patient voice doesn’t get heard.
Claire
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.
I was delighted! The relief I felt was coupled with a sense of having contributed to something that other people might benefit from.
Nick
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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