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"No plans" to stop providing "life changing" drug to those with cystic fibrosis

Manx Care has no plans to review Kaftrio provision, despite NICE recommendations

A drug described as "life changing" to those with cystic fibrosis will continue to be provided on the Island for the foreseeable future.

The National Institute for Health and Care Excellence (NICE) says Kaftrio is too expensive, and has recommended that NHS England stop giving it to new patients. 

It currently costs between £100,000 and £160,000 per year, per patient.

However, Manx Care says it has no current plans to review the offering here.

There is no cure for cystic fibrosis (CF), which is a genetic life-shortening condition affecting around 11,000 people in the UK.

Those who have it have inherited a faulty gene from both parents, which causes sticky mucus to build up in the lungs and digestive system, and requires daily medication to manage the effects of it.

Kaftrio, available on the NHS for specific strains of CF, has changed the lives of those able to take it.

Here on the Isle of Man, around 10 people have the condition.

Leanne Harper is one of them.

She's been telling Manx Radio what her life's been like with CF, and how it's changed since taking Kaftrio two years ago:

So what's going to happen here on the Isle of Man?

In a statement, Manx Care has told Manx Radio that Kaftrio is currently commissioned by the Department of Health and Social Care, while Manx Care funds and provides the drug for children aged six and over in line with NHS England.

If Kaftrio was decommissioned, it would be the decision of DHSC, although the department currently has no plans to review or withdraw funding here.

It adds there's no legal obligation for the DHSC to automatically follow a UK policy decision on treatments, however, if it is reviewed and removed by NHS England, then we may decide to undertake our own review.

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