Guernsey Press

Deal for cystic fibrosis drug, now to find money

ACCESS to lifesaving cystic fibrosis drugs has been secured for the Bailiwick, however its availability is yet to be announced.

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Health & Social Care president Deputy Heidi Soulsby. (Picture by Peter Frankland, 26356527)

The deal to secure Orkambi and Symkevi for people living with CF in the Bailiwick took around two weeks to complete and is similar to that secured in England last month.

The availability of the drugs locally, although not suitable for all, will improve the lives of people living with CF in patients with certain types of genetic mutations as the drugs target those rather than solely the symptoms as other drugs would.

Health & Social Care president Heidi Soulsby said she was delighted with the deal.

‘As soon as the existence of the NHS England deal became public knowledge, officers in Guernsey were in contact with Vertex, the manufacturers of the drug, to identify the terms of the deal and the potential for it to be extended to the Bailiwick,’ she said.

‘Though the UK have been in talks for a long time, we’ve been able to take advantage and it’s only been around a fortnight since those discussions started.

‘We’re a small community and those that it will benefit have been on tenterhooks about whether it would become available in the island. Although there’s not a huge number of people who will benefit from this drug, those who will do so will be ecstatic, it will change their lives.’

Clinical trials have shown to slow by 42% the decline of lung function, the main cause of death among people with cystic fibrosis, and reduce pulmonary exacerbations in patients given the drugs.

The two drugs are precision medicines which Deputy Soulsby thinks will change the face of medicine.

‘Precision medicines are a game-changer,’ she said. ‘I think the landscape of medicines will change in the future with the introduction of these types of drugs that target genetics rather than symptoms.’

Practicalities and funding of them, however, are yet to be decided.

‘Discussions are ongoing with Vertex in respect of practical arrangements,’ said Deputy Soulsby. ‘Both parties are keen that the drugs be made available to patients as soon as possible.

‘We are also working hard with colleagues in the States to identify the most appropriate funding source.

‘The availability of this drug locally will improve the lives of people living with CF.

‘This is part of our commitment, as outlined in the Partnership of Purpose, to continually strive to improve the health and wellbeing of islanders.’

In England, the five-year access deal was finally agreed on the NHS on 24 October after years of negotiations and will give around 5,000 people in the UK with life-limiting cystic fibrosis the chance to benefit from the drugs.