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Availability of CF drug ‘Christmas come early’

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‘IT’S like Christmas has come early’ said a trustee of Cystic Fibrosis Guernsey after it was announced that life-saving drugs are to be made available locally.

Mike Read, whose daughter, Courtney, has cystic fibrosis, at the protest outside the Royal Court earlier this year calling for life-saving drugs to be made available. (Picture by Adrian Miller, 26392077)

Health & Social Care spent two weeks negotiating a deal with drug manufacturer Vertex for local CF patients to have access to Orkambi and Symkevi, although when they will start receiving treatment is unclear.

CF Guernsey trustee Richard Bray, whose daughter has the condition, said the charity was delighted when news came that HSC had negotiated the drugs’ availability.

‘It’s been a long battle,’ he said. ‘We were delighted when the news came from the UK about the deal with Vertex. Some have said it’s like Christmas has come early.’

The nature of the genetic condition means that the drugs will not suit everyone, but Mr Bray said that three or four of the islanders with CF should be able to receive it. He thought there were probably about six CF patients in the island in total.

Cystic fibrosis is a genetic disorder which causes the lungs and digestive organs to become clogged with mucus. The average life expectancy of someone living with this condition is around 35 years.

‘The encouraging thing about this drug [Orkambi] is the way it works,’ said Mr Bray, saying that it ‘stopped the clock’ of the condition’s progression.

Clinical trials of the drugs have shown they slow by 42% the decline of lung function, the main cause of death among people with cystic fibrosis.

CF Guernsey president Mike Read described news of the drugs’ availability as ‘an overwhelming and emotional turning point for our CF sufferers and their families’.

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‘These drugs will significantly improve the quality of life of our most seriously ill sufferers, potentially adding decades to their lives,’ he said.

‘For others it will allow an almost normal life and future, unrestricted by their CF.’

Mr Read’s daughter, Courtney, 23, has campaigned for the drugs to be made available locally, and she and family members staged a lie-down protest outside the Royal Court earlier this year.

Agreement was finally reached in October in the UK for the drugs to be made available free on the NHS in England.

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Channel Island CF patients’ care is controlled by NHS multi-disciplinary teams at specialist centres in the UK, which could have led to a situation where islanders’ NHS consultants would have been in a position where they were able to give the life saving drugs to NHS patients, but not to Guernsey children or adults in the same ward.

‘We are incredibly grateful that Deputy Heidi Soulsby and HSC has responded so rapidly and changed the future for CF sufferers in Guernsey,’ said Mr Read.

‘HSC are proposing to widen access to hundreds of other NHS drugs and treatments, benefiting thousands of local patients with other serious and life-threatening conditions. States members will have the opportunity of supporting the HSC proposals in January.’

. HSC is not releasing details of the costs of the drugs: ‘The terms of the deal are subject to a confidentiality agreement,’ it said.

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