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Couple's joy as drug made available on NHS could add 23 years to daughter's life

PUBLISHED: 12:54 27 October 2019 | UPDATED: 16:17 27 October 2019

Two-year-old Esme Ives (left) has cystic fibrosis, her family are now celebrating as a life-extending drug called Orkambi becomes available on the NHS. Here she is pictured with her sister Willow. Picture: Ella Wilkinson

Two-year-old Esme Ives (left) has cystic fibrosis, her family are now celebrating as a life-extending drug called Orkambi becomes available on the NHS. Here she is pictured with her sister Willow. Picture: Ella Wilkinson

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A couple have spoken of their joy after hearing their two-year-old daughter could get a life-saving drug which could add more than 20 years to her life.

Two-year-old Esme's family are celebrating as the life-prolonging drug Orkambi becomes available on the NHS to treat her cystic fibrosis. Pictured here with parents Mark and Claire Ives and sister Willow. Picture: Ella WilkinsonTwo-year-old Esme's family are celebrating as the life-prolonging drug Orkambi becomes available on the NHS to treat her cystic fibrosis. Pictured here with parents Mark and Claire Ives and sister Willow. Picture: Ella Wilkinson

A deal has been reached to provide cystic fibrosis (CF) drugs on the NHS which could help thousands of sufferers.

Around 5,000 NHS patients will now have full access to Orkambi following an agreement between Vertex Pharmaceuticals and NHS England.

One of those patients is two-year-old Esme Ives from Attleborough.

Mum Claire Ives, 35, of Bracken Drive, said: "It was amazing news, total disbelief at first."

A deal has been reached to provide lifesaving cystic fibrosis drugs on the NHS. Picture: Handout/PA WireA deal has been reached to provide lifesaving cystic fibrosis drugs on the NHS. Picture: Handout/PA Wire

When Esme was born on August 30, 2017, her parents Claire and Mark were told she may only live until her early 40s.

Since then, the family had joined hundreds of others in the fight to get the drug available on the NHS.

Such was their desperation that they even considered leaving family and friends behind to relocate to Scotland, where the drug has been available on the health service since September 12.

Mrs Ives, a teacher at Thomas Bullock Primary Academy in Shipdham, said: "I didn't think it would happen anytime soon, my husband thought it we would get it for children aged over 12.

Two-year-old Esme's family are celebrating as the life-prolonging drug Orkambi is available on the NHS to treat her cystic fibrosis. Pictured here with parents Mark and Claire Ives. Picture: Ella WilkinsonTwo-year-old Esme's family are celebrating as the life-prolonging drug Orkambi is available on the NHS to treat her cystic fibrosis. Pictured here with parents Mark and Claire Ives. Picture: Ella Wilkinson

"In our minds we didn't want to get our hopes up.

"We wanted to enjoy her life but we knew she was given about 40 years, that's what the doctors say, but you hear about children dying at 11 and you can't relax.

"You try to do everything you can because you don't know how long she's got."

The couple also married on August 18 this year to create special memories with Esme and her four-year-old sister Willow. 
"We got married due to Esme's CF and me wanting to have the same family name," Mrs Ives said.

Esme's family are celebrating now a life-prolonging drug called Orkambi has become avaialble on the NHS to treat her cystic fibrosis. Here she is pictured with her mum Claire Ives. Picture: Ella WilkinsonEsme's family are celebrating now a life-prolonging drug called Orkambi has become avaialble on the NHS to treat her cystic fibrosis. Here she is pictured with her mum Claire Ives. Picture: Ella Wilkinson

CF causes sticky mucus to build up in the lungs, increasing the chances of serious lung infections and breathing problems.

It is caused by a defective gene, and one in 25 people carry the faulty DNA.

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Mr and Mrs Ives were told Orkambi - which is prescribed to patients over the age of two - could give Esme an extra 23 years.

Esme's family are celebrating now a life-prolonging drug called Orkambi has become avaialble on the NHS to treat her cystic fibrosis. Here she is pictured with her dad Mark Ives. Picture: Ella WilkinsonEsme's family are celebrating now a life-prolonging drug called Orkambi has become avaialble on the NHS to treat her cystic fibrosis. Here she is pictured with her dad Mark Ives. Picture: Ella Wilkinson

The drug is said to slow decline in lung function - the most common cause of death for people with cystic fibrosis.

"When we first started campaigning Esme was going to turn two," Mrs Ives said. "We needed the drug to be made available."

As there is no cure for CF, people with the condition may need to take different medicines everyday to help digest food and treat and prevent lung problems, as well as undergo daily physiotherapy, antibiotics, and take enzyme tablets with food.

One of the problems with the condition, Mrs Ives said, was her daughter appearing seemingly healthy.

Two-year-old Esme (left) has cystic fibrosis, her family are now celebrating as a life-extending drug called Orkambi becomes available on the NHS. Here she is pictured with her sister Willow. Picture: Ella WilkinsonTwo-year-old Esme (left) has cystic fibrosis, her family are now celebrating as a life-extending drug called Orkambi becomes available on the NHS. Here she is pictured with her sister Willow. Picture: Ella Wilkinson

"She doesn't appear to be ill," she said. "She'll get the occasional cough and she currently has a bug which is symptomless."

Vertex said patients will be able to access the drugs on prescription within 30 days.

Mrs Ives hopes to begin the process of getting Esme on the new medication in January.

"The NHS is probably getting bombarded with calls," she said in jest.

Two-year-old Esme has cystic fibrosis, she is now celebrating as a life-prolonging drug called Orkambi has become avaialble on the NHS. Picture: Ella WilkinsonTwo-year-old Esme has cystic fibrosis, she is now celebrating as a life-prolonging drug called Orkambi has become avaialble on the NHS. Picture: Ella Wilkinson

The breakthrough follows a three-year row between the pharmaceutical firm and the NHS over the cost of Orkambi.

When the announcement was made on Thursday, October 24, the family celebrated by having a meal at The Stag in Attleborough.

"Everyone was texting and sharing stuff online it was amazing news, we didn't see it coming," Mrs Ives said.

NHS England said the deal was made possible by the company agreeing confidential commercial terms that constitute good value for British taxpayers.

Two-year-old Esme has cystic fibrosis, she is now celebrating as a life-prolonging drug called Orkambi has become avaialble on the NHS. Picture: Ella WilkinsonTwo-year-old Esme has cystic fibrosis, she is now celebrating as a life-prolonging drug called Orkambi has become avaialble on the NHS. Picture: Ella Wilkinson

The National Institute for Health and Care Excellence (Nice) has backed the agreement, and Vertex will submit its drugs in due course for their appraisal.

Health Secretary Matt Hancock tweeted: "I know personally how important this is - and I've met many sufferers. Things like this are the reason I do this job.

"For those who say the system doesn't work, this proves them wrong. We can get lifesaving drugs at a fair price, thanks to Nice and the NHS. We should all reject calls to undermine that."

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