Daily Express

‘We can’t wait four years for wonder drug’

- By Chris Riches

THE parents of a girl with cystic fibrosis whose condition makes her cough up blood have joined our campaign to bring “wonder drug” Trikafta to the UK.

Because of her gene mutation, seven-year-old Darcie Jones cannot take the existing CF drugs that the Daily Express has helped make available on the NHS.

But her mum and dad are now calling on the NHS, pharmaceut­ical giant Vertex and UK drugs appraiser Nice to begin working on an early deal so Trikafta – or Triple Therapy – can be rolled out here as soon as it is licensed next summer.

It is thought the new medication will be able to help twice as many CF sufferers as current drugs such as Orkambi – with profound life-changing results.

Darcie’s adoptive mum Ana, 37, said: “Trikafta is a gamechange­r drug that can have miraculous effects. It could give Darcie a normal life.

“CF children like Darcie need and deserve a life unlimited.” Carer Ana and her husband Thomas, 36, adopted Darcie when she was three after spending months researchin­g CF.

The youngster had already suffered significan­t damage to her lungs as her birth mother did not manage her condition. And because she is more vulnerable to infections, Darcie often finds herself coughing up blood.

“It is horrible,” Ana said. “She cannot go to school and is very ill.

“We do not blame her birth mother as she simply could not cope, but she would smoke by Darcie. That has not helped her lungs.”

Ana, who is also adoptive mum to Toby, three, added: “Darcie is the most amazing, beautiful little girl in the world.

“She hasn’t deserved what has happened to her in her short life. We did our research before we adopted her but that doesn’t prepare you for the sight of seeing her so ill.”

In one year alone, Darcie – who has a permanentl­y collapsed lung – has been hospitalis­ed six times so intravenou­s antibiotic­s can be pumped straight into her veins.

Her family has also moved from Leeds to the Yorkshire Dales in a bid to live where the air is as clean as possible.

But Ana told us: “What she really needs is Trikafta as soon as possible.

“When it is licensed in the UK next summer, it must be immediatel­y available for CF-ers like Darcie who desperatel­y need it.”

In October, after a four-year campaign by CF sufferers and their families, Health Secretary Matt Hancock signed a deal with US drugs company Vertex to make CF drugs Orkambi, Symkevi and Kalydeco available on the NHS in the UK.

Around half of the country’s 10,500 CF patients will benefit from the three current drugs – but it is thought Trikafta will help 90 per cent of all sufferers.

Ana said: “It took four years for Orkambi to finally be made available on the NHS after being licensed here. There can be no delay like that for Trikafta.”

 ??  ?? Appeal... CF sufferer Darcie Jones
Appeal... CF sufferer Darcie Jones

Newspapers in English

Newspapers from United Kingdom