Pendle MP, Andrew Stephenson has taken up the fight to make the Orkambi drug available to children suffering from Cystic Fibrosis, raising the issue with Government Health Ministers.
This was after he was urged to do so by the North West Parents Cystic Fibrosis Support Group, which is campaigning to make the drug available on the NHS.
Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system causing lung infections and problems with digesting food. It worsens over time and despite improvements in treatments available, shortens life expectancy.
Orkambi is licensed for use in the UK but has been rejected by the National Institute for Clinical and Care Excellence (NICE), the body that is tasked with offering independent guidance to the NHS on which drugs it can use to treat a number of conditions. In 2016, NICE decided against using Orkambi on the basis of the cost set by Vertex, the pharmaceutical company behind the drug. The cost of Orkambi is £104,000 per year for each patient.
Mr Stephenson took up the concern of parents of Cystic Fibrosis sufferers by raising the availability of Orkambi with Health Ministers. They confirmed that they are working with pharmaceutical companies and healthcare organisations to speed up how new medicines are approved, following an Accelerated Access review, and called on Vertex to continue to negotiate with the NHS.
Mr Stephenson said, “Learning about how Cystic Fibrosis affects young children is harrowing. Better treatments are being developed all the time but it is important decisions about cost and effectiveness are made by the experts.
“I am pleased Ministers are pushing for drugs like Orkambi to be approved for use quicker, and I want Vertex and NHS England to reach an agreement as soon as possible to this drug can be made available to children suffering from Cystic Fibrosis in Pendle”.