Orkambi - Breaking news 2 June

YesOrkambi

A YesOrkambi group involving parents and people with CF in Ireland has posted a video on facebook in support of the reimbursement of Orkambi in Ireland. This is the first in a series of videos that includes people with CF who have benefitted from Orkambi as part of the clinical trials.
https://www.facebook.com/yesorkambi/

 

News from CFI 

The head of the NCPE Professor Michael Barry has indicated that both the HSE (Corporate Pharma Unit) and the drug manufacturer ‘Vertex’ are willing to negotiate on Orkambi in relation to price. CFI has urged that this process is completed as soon as possible and the drugs company should significantly reduce the price of Orkambi as part of these negotiations.

 

Selection of Media coverage

June 1
NCPE issue statement that Orkambi ‘reimbursement not recommended at the submitted price’
http://www.ncpe.ie/drugs/lumacaftorivacaftor-orkambi/

June 2
Jillian McNulty (PWCF); Philip Watt (CFI) and later Professor Michael Barry NCPE on RTE ‘Morning Ireland’
http://www.rte.ie/radio1/morning-ireland/#2195140

Orla Tinsley (PWCF) and Brian McCarroll (PWCF) on Sean O’Rourke’s RTE Programme
http://www.rte.ie/radio1/today-with-sean-o-rourke/category/health-and-fitness/#2195256

Terri and Aisling Golden (Sligo branch) on Ray D’Arcy programme
http://www.rte.ie/radio1/ray/

Irish Times website has regular updates
http://www.irishtimes.com/news/health/ncpe-calls-for-five-fold-reduction-in-cost-of-cf-drug-orkambi-1.2669942

There is also coverage in today’s Daily Mail, Irish Independent and Examiner and on local radio stations including Galway Bay FM; Clare FM and on Cavan radio involving CFI board and branch members including Kieran McCarthy and Lorraine O’Neill. Jillian McNulty will be on RTE and UTV television news this evening (Thursday 2 June).