Julian lobbies government on access to new Cystic Fibrosis drug
March 21, 2018
Julian has acted to support local residents affected by Cystic Fibrosis by writing to the Health Secretary and tabling written parliamentary questions to the Department of Health regarding the provision of the drug Orkambi on the NHS.
Orkambi can have a life-altering impact on the lives of people with Cystic Fibrosis, helping to alleviate some of the debilitating symptoms of this condition. Data suggests that this medicine can slow lung decline by 42% and reduce the number of infections requiring the hospitalisation of sufferers by 61%.
The National Institute for Health and Care Excellence (NICE), the body responsible for recommending drugs for use, decided not to recommend Orkambi in July 2016 on the basis that it would not be cost-effective for the health service, and that there was not enough long-term data on its use. It is reported that the current pricing of a year’s worth of Orkambi treatment is £100,000.
Discussions are ongoing between the drug’s manufactuer, Vertex, NHS England and NICE over agreeing arrangements that will allow it to be recommended for use, and Vertex has recently put forward new data on the drug’s effectiveness, and a revised financial offer. NICE are scheduled to review their guidance on Orkambi again in 2019, but there are calls for this process to be speeded up in view of the needs of patients, and the new information from Vertex.
Julian said: “Having been contacted by affected constituents and by the Yorkshire Parents Cystic Fibrosis Support Group, I thought it was vital to write directly to the Health Secretary, and to table written parliamentary questions to the Department of Health.
I hope that NICE, NHS England and the Department of Health listen to calls from me and other MPs to bring forward its scheduled 2019 review of its decision not to recommend Orkambi to treat Cystic Fibrosis. I believe the new data on the effectiveness of Orkambi, and the new financial proposals by its manufacturer make it essential this is done as soon as possible.
I have supported calls for easier access to new medicines for Cystic Fibrosis sufferers for several years, speaking in parliamentary debates, and supporting the application for a debate back in December 2015. I will continue to lobby the government so that people in York living with this condition can use this life-changing drug”.