Bromsgrove mum's fear for her children over CF life-saving drug row - The Bromsgrove Standard

Bromsgrove mum's fear for her children over CF life-saving drug row

Bromsgrove Editorial 22nd Feb, 2019   0

A BROMSGROVE mum has pleaded with NHS bosses to strike a deal for a drug which could extend her children’s lives.

Two of Jade Allsop’s children, Leighton, 12, and nine-month old Lydia, have cystic fibrosis, a genetic disorder which affects the lung, pancreas, liver, kidney, and intestine.

Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.

US-based drug company, Vertex Pharmaceuticals, has been locked in a fight over the NHS’s rebuffed £500million offer for its life-saving drug Orkambi.




The medication has remained unavailable on the NHS since its approval in 2016, during which time it is feared many cystic fibrosis sufferers have died.

Jade said: “Both of my children have the mutation DF508 so they would be eligible for Orkambi if an agreement on the price could be made between Vertex and NHS England.


“Leighton has already been through so much – including hospital admissions and having a vascular port fitted.”

Both of Jade’s children undergo hours of treatments everyday to keep them well, they also take medication daily.

“This wonder drug could add years to their lives.

“How could anyone put a price on a child’s life?”

The impasse on Orkambi has led to the Health and Social Care Committee launching an inquiry, which will be held in Parliament on March 7.

Vertex is the world’s main developer of cystic fibrosis drugs and of the 70,000 people worldwide who suffer from it, around 10,400 are in the UK.

Visit www.nhs.uk/conditions/cystic-fibrosis/ for more information.

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