Cystic fibrosis treatment leaves charity redundant

After watching his daughter Courtney battle through ill health during her teenage years, Mike Read set up Cystic Fibrosis Guernsey – alongside another father whose daughter was a sufferer – to help raise awareness and funds to help islanders with the condition to get the right treatment.

‘We set it up in 2016,’ said Mr Read, who has become a health campaigner locally in the following years and now sits on the Health & Social Care Committee as a non-voting member.

‘We weren’t really intending setting up it as a charity, it was really Courtney having a tough time having just left school at 18, and really struggling with CF.

‘We didn’t know any other families over here and you get to a stage where you’re just feeling a little bit helpless, particularly as a parent. What can you do to help your child?

‘The only thing I could think of was let’s just try and raise awareness of cystic fibrosis and what Courtney is going through, and if I could raise some money at the same time and maybe find some other families locally, then we can we can share stories,’ he said.

‘I was aware that Courtney was the oldest of a cohort of younger people with CF coming through, so the idea was that we were all going through the same path but separately, so we could share pooled experiences and take it from there.

‘But we raised some money, attracted the interest of the CF Trust, because that’s who we sent the money to. Things kind of snowballed, other families wanted to be involved, and it just developed into a charity.’

At the time the charity was formed Miss Read was struggling with her illness and Mr Read said that things were looking quite bleak for her daughter – the ‘clock was ticking’ to find her a treatment.

‘The timing worked because the drugs and treatment issues were surfacing at the time. The NHS was battling with drugs companies and a particular one called Vertex, who were manufacturing probably the first of the medicines, specifically for cystic fibrosis.

‘It was available many places through Europe and America, but it wasn’t available in the UK, and obviously not Guernsey or Jersey as well, and that was the sort of drugs for where Courtney was getting to with her health, where we needed intervention because otherwise things were looking pretty bleak at that stage,’ he said.

‘It turned into a bit of a campaign to try and get drugs for those with CF, but also in doing that, we couldn’t just get it for those with CF, we needed to widen the scope because it needed a policy change over here, which is where the NICE TA drugs and treatments came in.

‘So from 2018 onwards it turned into working with deputies, discussing with HSC what the barriers to it were, and just getting the momentum behind reviews of where we were.’

In November 2020 the States secured a deal with ithe NHS to extend the use of CF drugs Orkambi and Symkevi for local sufferers.

Having achieved what it was originally formed to do, Mr Read said that the charity had ‘reached a dead end’ and that if new people with new ideas did not step forward the trustees would dissolve Cystic Fibrosis Guernsey.

‘We feel as if we’ve done all we can. As a charity, we’ve essentially just got money sitting there that we’re not doing anything with,’ he said.

‘We’ve done what we can for those at this period in time, so it’s time either to draw a line under it or potentially there are five other families over here with CF at the moment and we’re not doing anything to help them, they’re independent, which is great, which is always what we wanted to achieve, but if they wanted to develop it in some way in the future, then they can get in contact with us.

'But time’s running out on that.’

Mr Read said that the charity being taken over would be an ideal solution, but would-be campaigners needed to be aware that there was no particular campaign for them to work on at the moment.