WATCH: Portsmouth girl, six, with cystic fibrosis pens heartfelt letter to PM to get life-changing drug on NHS

Emma Frank with dad

Mark, brother Oliver and mum Michelle.
Picture : Habibur Rahman PPP-181105-171949006 — Emma Frank with dad Mark, brother Oliver and mum Michelle. Picture : Habibur Rahman PPP-181105-171949006

Emma Frank, six, has had cystic fibrosis her entire life and makes regular visits to hospital for medics to treat the illness which causes a thick mucus to form on her lungs and digestive system.

Her mum Michelle, from Paulsgrove, has joined a nationwide campaign with other parents to get drug Orkambi free on the NHS.

The treatment means Emma’s cystic fibrosis would not get any worse and she could live a practically normal life.

Her letter, along with hundreds of others from people with the condition, will be delivered to Theresa May in Downing Street by Paulsgrove mum Gemma Weir and her daughter Ivy, who also has the illness.

Emma’s letter said: ‘Please can you give me Orkambi because I have cystic fibrosis.

‘Orkambi will make me better and I won’t have to stay in hospital every three months to have a Picc line for IV (intravenous) medication.’

As well as stays in hospital, on a daily basis Emma has to take oral and nebulised antibiotics and do physiotherapy to clear the mucus.

Emma with her letter to the prime minister

She takes an enzyme before any meal or snack and has to have supplements to help her put on and maintain weight.

Emma’s eight-year-old brother Oliver has also penned an emotional letter to Mrs May. He says the family needs her help.

It said: ‘Dear prime minister, please can we have Orkambi. It will be really good for my sister Emma, six, who suffers from cystic fibrosis.

‘It will change her life, because she will be much more healthier like me, and I don’t want to lose my sister! We need your help, we need Orkambi now!’

As reported in The News, Orkambi is not available on the NHS after the National Institute for Health and Care Excellence (Nice) recommended it was not cost-effective. Currently the drug, which does not cure cystic fibrosis but stops the condition from getting worse, costs £104,000 per patient per year.

Gemma and Michelle launched a petition earlier this year which got 114,000 signatures. It was delivered to Downing Street and debated in parliament.

Since then, fresh talks have taken place between Orkambi producers Vertex Pharmaceuticals and NHS England.

In a statement last month, Vertex said it was committed to working with NHS England to come to an agreement.