Julian Shows Support for Cystic Fibrosis Sufferers in Parliament
December 16, 2016
Earlier this week Julian spoke in a Westminster Hall Debate on Cystic Fibrosis and the implications of the Accelerated Access Review after being contacted by constituents who are directly affected by the illness.
Just over a year ago he spoke in a similar debate after supporting its application, and called for NICE and NHS England to become more flexible in how they consider new and innovative medicines.
The Accelerated Access Review, which reported on 24th October, made a number of recommendations including an ‘accelerated access pathway’ for transformative medicines, an enhanced horizon scanning process, more flexible pricing arrangements, and gathering of real-world data to prove how effective the drug is.
In July 2016 the National Institute for Care Excellence (NICE) did not recommend the commissioning of Orkambi on cost grounds. The Government, NHS England and the pharmaceutical company Vertex who own Orkambi were not able to reach an agreement. It is reported that the current pricing of a year’s worth of Orkambi treatment is £100,000.
New data made available since this decision has shown that Orkambi slows the decline in lung function by 42%, and in the debate Julian made the point that if Orkambi was to be made available then hospital admissions and other treatments would certainly decline.
Speaking after the debate Julian said, “I was pleased to hear that the Minister is receptive to the recommendations of the Accelerated Access Review, and I understand that the Government will produce a comprehensive response in due course.
“Price is clearly the main barrier to Cystic Fibrosis sufferers getting access to Orkambi, and I believe that the changes to the way that new drugs are considered that is recommended in the Accelerated Access Review could help the Government and the NHS to reach a compromise that is good for patients and the tax-payer. I will continue to lobby Ministers on this very important issue that affects thousands of people across the country.”