…Why yes actually, I spent a very engaging 6 hours in hospital taking part in a first-of-its-kind phase III clinical gene therapy trial.
Could have done with an actual day off though, come to think of it.
So I’m currently taking part in the UK’s only ongoing major gene therapy trial for Cystic Fibrosis patients. To be considered you have to be well enough to be living a fairly ‘normal’ life with a lung function that is mild to moderately affected, but ill enough for them to clearly observe any potential improvements as a result of the trial. I am one of those lucky people.
As far as I’m concerned, it’s my first real attempt to ‘give something back’ to the CF community. I have fundraised before, but never to a significant level. I’ve filled out a few surveys in hospital and taken part in some very brief product trials but nothing more. I thought it was an appropriate time to do more and of course, with a potential benefit to myself.
Here’s the catch though. Like any major medical trial these days, there has to be a placebo involved in order to verify results for the wider world. This means, every 2nd person on the trial, will be taking a placebo treatment for the entire duration, (obviously) without their knowledge.
The trial is a year long, with monthly appointments that take a minimum of 4 hours and a maximum of 8. That is at least 72 extra hours I will spend at hospital this year, in addition to other routine appointments I must attend every other month. Not to mention any unscheduled time for treatment due to illness.
I must do this around a full-time job with hours that often extend over 9-6. I also have several side projects on the go, not to mention my career ambitions, regular exercise (an essential part of staying well) friends and family to see, a life to live and a decent amount of shopping to fit in too.
I could spend all that extra hospital time receiving nothing more than a simple saline solution with no medical benefit to my lungs. Which is why, I think, it’s very important to take part in things like this for reasons other than my own health. By participating, I’m helping scientists and doctors help the next generation of CF sufferers live healthier, longer lives, and perhaps even bring that all-elusive cure a step closer for us all.
That, I think, is a venture worth taking part in.