Letters backing cystic fibrosis drug to be delivered to London today, including 200 from Havant school

TODAY, more than 1,000 letters from children with cystic fibrosis will be handed to the prime minister pleading to make a life-changing drug free on the NHS.

Wednesday, 16th May 2018, 7:00 am
Updated Friday, 8th June 2018, 8:24 am
Chloe Drinkwater with parents Sarah and Darren

Around 200 of those letters are from the classmates and school friends of young Chloe Drinkwater.

The five-year-old, from Havant, has cystic fibrosis which causes a thick, sticky mucus to clog up her lungs and digestive systems.

She has penned a heartfelt letter to Theresa May calling for Orkambi to be on the NHS.

Sign up to our public interest bulletins - get the latest news on the Coronavirus

Sign up to our public interest bulletins - get the latest news on the Coronavirus

Chloe Drinkwater with parents Sarah and Darren

Currently, the treatment is only available privately as it costs £104,000 per year per patient.

Chloe’s hand-written letter and the letters from her school, Fairfield Infants, will be delivered to Downing Street by Portsmouth mum Gemma Weir and her daughter Ivy, who has the condition.

In her letter, Chloe said: ‘My name is Chloe, I am five and I have CF.

‘There is a tablet called Orkambi that will help me live longer and keep me healthy.

‘Please can you allow the tablet to be given to me.

‘Thank you very much.’

As previously reported in The News, other young cystic fibrosis sufferers have also written to Mrs May with a similar message to Chloe.

Although Orkambi does not cure the condition, it does stop it from getting worse.

Parents have said it means their children can lead a practically normal life.

Currently, people with cystic fibrosis have to take multiple medication and vitamins, do daily physiotherapy and have regular trips to the hospital.

Chloe’s mum, Sarah, said: ‘Chloe is such a caring, bright and brave little girl who deserves a chance to live a life unlimited.

‘Her daily routine consists of physiotherapy, nebulisers, antibiotics, vitamins and enzymes which she has to take every time she eats or drinks anything with fat in.

‘Chloe also has cystic fibrosis-related liver disease which could mean the need for a transplant at some point in her life.’

Due to its expensive price, the National Institute for Health and Care Excellence (Nice) has not recommended its use for the NHS.

But the drug is available in other countries like Germany, Greece, the United States and the Republic of Ireland.

A campaign by Gemma and fellow Portsmouth mum Michelle Frank has seen Orkambi debated in parliament after a petition got 114,000 signatures.

There have also been protests in London and MPs have been written to, asking for their backing.

David Ramsden, chief executive of the Cystic Fibrosis Trust, said: ‘Cystic fibrosis is a terrible condition.

‘Significant advances in medical science mean new precision medicines are available or in development that have the potential to transform the lives of people with cystic fibrosis.

‘We urge the prime minister to ensure they are available for the thousands of children and adults who have been waiting far too long.’

The nationwide campaign has seen NHS England and pharmaceutical company Vertex enter discussions about moving forward.

A spokesman from Vertex said: ‘When hundreds of children with cystic fibrosis are compelled to write to the prime minister because they cannot access the first medicine to treat the underlying cause of their condition, it sends a clear signal we do not have time to waste.

‘We share the cystic fibrosis community’s sense of urgency and in recent weeks the clinical community has also written to the NHS leadership asking for an urgent resolution.’