LIAM’S STORY
MOTHER-of-two Kay Sadler is furious that US drug firm Vertex is holding UK cystic fibrosis children to ransom.
Crown Prosecution Service lawyer Kay, 38, and her partner Duncan Sharp, 36, were shattered when doctors told them baby son Liam had the condition.
Now aged 22 months, Liam has a rigorous daily routine starting with physiotherapy at home at 6.15am followed up with medication before every meal.
Kay, of Howsham, in North Lincolnshire, said it is “ridiculous” that a drug that could halt his future health decline is being withheld over money.
She said: “We are so far quite lucky with Liam in that he hasn’t needed a feeding tube and is a happy little boy and we have our routine.”
But she added: “Ask any CF mum or dad and they will tell you, you have to be incredibly organised every hour or every day. It is tough.
“I think the farce around Orkambi is infuriating as there is a drug that could really help young people and it is sitting on a shelf over money.” Kay says she hopes Vertex will sit down and iron out a fair agreement not only for Orkambi, but other drugs it hopes to introduce.
She worries: “The Government could use the law to allow other companies to make a cheaper version of Orkambi but would that affect the chance CF people have of getting access later to the other new drugs they have in the pipeline?
“It is a difficult decision to weigh up but I just pray the matter is dealt with swiftly and people in power on both sides make the right choice.”