Orkambi

Bambos Charalambous Excerpts

Monday 4th February 2019 Commons Chamber

[Bill Wiggin (North Herefordshire) (Con)]

Last week, one of my constituents, whose daughter suffers from cystic fibrosis, came to see me. He explained that every year that access to Orkambi or other such similar drugs is delayed takes 10 years off the life of his daughter.

My constituent explained how the long hours in hospital and in treatment mean that cystic fibrosis defines his daughter’s life. However, clinical trials by Vertex seven years ago marked the start of a new hope. Vertex’s amazing progress suggested that he might not outlive his daughter, that she could have the fullest life now possible, and that he would not have to tell her that she was likely to die when barely into adulthood. The whole House will understand that never in his worst nightmares did he consider the fact that these drugs would succeed yet be unavailable to his daughter.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

Is the hon. Gentleman aware that Orkambi, which is manufactured by Vertex, is licensed and available in Ireland and the Netherlands where there are only 1,000 cystic fibrosis sufferers, but not available in the UK where there are more than 10,000 sufferers? Does he agree that that is a terrible shame?

[Bill Wiggin]

I suggest that the hon. Gentleman hears the rest of the speech before he expects to draw any conclusions.

Cystic fibrosis is a life-limiting genetic disorder. Patients with cystic fibrosis experience a build-up of thick mucus in their lungs. This can have a wide range of effects on their respiratory, digestive and reproductive systems. The disease is widespread in the UK. One person in 25 carries the faulty cystic fibrosis gene. Statistically, that is 26 Members of this House whose future generations could be affected by this cruel disease.