Julian continues to lobby the Government on precision medicine to treat Cystic Fibrosis
January 20, 2016
In December Julian spoke in a debate which focused on access to medicines for people with Cystic Fibrosis and other rare diseases. Following the debate Julian decided to table some additional questions to George Freeman MP, the Parliamentary under Secretary of State for Life Sciences.
Firstly, Julian asked the Minister ‘what representations he has received on reforming NICE’s procedure of appraisal of medicines.’ In response the Minister stated:
‘We receive representations about the National Institute for Health and Care Excellence’s (NICE) technology appraisal programme from hon. Members, members of the public, clinicians and the pharmaceutical industry. NICE is the independent body that provides guidance on the prevention and treatment of ill health and the promotion of good health and social care and is responsible for its own processes and methodology. NICE regularly reviews these and its internationally renowned technology appraisal programme has evolved constantly to meet new challenges. NICE has demonstrated its ability to adapt to changes in the health and care environment, and we expect it will continue to evolve in the future, in particular through the recommendations of the Accelerated Access Review which NICE is centrally involved in. Further guidance on NICE’s processes of technology appraisal is available at:
www.nice.org.uk/article/pmg19/chapter/Foreword.’
Julian also asked the Minister ‘when he expects Orkambi to be appraised by NICE?’ In response he stated:
‘The National Institute for Health and Care Excellence (NICE) is currently developing technology appraisal guidance on the use of Orkambi (lumacaftor in combination with ivacaftor) for the treatment of cystic fibrosis in people who are homozygous for the F508del mutation. NICE’s anticipated publication date for this guidance is July 2016. Further information is available at: www.nice.org.uk/guidance/indevelopment/gid-tag530.’
Reflecting on these responses Julian said:
‘I am pleased to read that NICE is currently developing technology appraisal guidance for the use of Orkambi and I look forward to reading this guidance in July. In the meantime I will continue to lobby the Government over this important matter to ensure people can access precision medicine as and when they need it.’
