Campaigner calls for ‘common sense’ around Cystic Fibrosis drugs

A CYSTIC Fibrosis campaigner from Castlederg has called for ‘common sense to prevail’ after it emerged that a number of ‘life-changing’ drugs used to treat the condition have been deemed too expensive to be prescribed on the NHS.

Liam McHugh was speaking out after the National Institute of Health & Care Excellence (NICE) made a draft decision indicating that it would no longer recommend the prescription on the NHS of effective modulator drugs in the treatment of Cystic Fibrosis (CF).

These drugs – Orkambi, Symkevi and Kaftrio – have been described as ‘life-saving’ and work to tackle the underlying cause of CF.

When these drugs were made available on the NHS in 2019 and 2020 as a treatment for Cystic Fibrosis, it was agreed that the clinical and costeffectiveness of these therapies would be reviewed in four years by NICE.

That review was conducted last year, and NICE concluded that, while the drugs have been shown to be effective in the treatment of the condition and had brought significant benefits to people with Cystic Fibrosis, they do not consider them to be value for money at the current price, and would no longer recommend their use on NHS.

But Mr McHugh said he hoped the drugs would be allowed to be prescribed to everyone who needs them.

He said, “I hope common sense prevails, and they start prescribing these life-changing drugs again.

“There is some good news that they will continue the treatment of people who are already on the drugs, but not prescribing these drugs to new people is disgusting.

“If they do not change their minds about this, we will take our placards down out of the attic and start protesting again.

“I can’t stress how amazing these drugs are and the difference they make on people with CF’s lives.”

Mr McHugh added, “I would like to thank Caroline Devine and all the councillors at Derry City & Strabane for lobbying for these drugs to be returned.”

A motion calling on Derry City and Strabane District Council to lobby for the drugs to be reinstated was brought forward by Derg councillor, Ms Devine, and unanimously passed.

She said, “Our council recorded our support for the need for these life-changing medications to be made available on the health service to people with Cystic Fibrosis back in 2017, backing the campaign that was led here by Liam McHugh.

“While these are just draft recommendations at this stage, and that review process is continuing, it is understandable that this has caused concern for those with Cystic Fibrosis, particularly for parents of children with the condition.

“It’s important to emphasise that the latest update from NICE confirms that no-one will lose their current access to the modulator treatments while the NICE appraisal is ongoing, and anyone assessed as needing them will be able to start the treatments.”

However, she added, “Given the major uncertainty and concern that now exists among Cystic Fibrosis sufferers and their families, council agreed with my proposal to write to NICE and the British Prime Minister expressing our deep concern and opposition to the removal of these modulator drugs on the NHS and that they reverse this decision.”