I have been on Orkambi for almost 3 years and it has transformed my life. In 2015 I got 1 year hospital and Intravenous Antibiotic free. Something I never thought possible due to the sharp decline in my CF in the year before starting Orkambi. I can now live a relatively normal life, I have boundless energy which I didn't have before Orkambi. I have had no progression in my CF since Orkambi. Orkambi is not a cure so I still need my daily meds, physio etc but it has improved my quality of life. Orkambi has given me my life back.
Last week the National Centre for Pharmacoeconomics did not recommend Orkambi due to submitted cost. My hospital stays pre Orkambi were 6-9 months a year and these can cost hundreds of thousands of Euro's: IV antibiotics, nursing staff, doctors, physiotherapists, dietitians, phlebotomists, CT scans, X-Ray's, possible surgeries are all required while an in patient. A patient on Orkambi will not require as much hospitalisations/IV antibiotics so they will not be a strain on the health system.
It is now down to Simon Harris, Minister for Health & the HSE Corporate Pharmaceutical Unit to negotiate a new price with Vertex. I am asking that a price be negotiated quickly so that no more lives are lost to the cruel unforgiving illness that is Cystic Fibrosis.
