[lise-hunter]

Recently very disappointed at grand daughters last cf clinic appt. She just turned 7 yrs old and so far she’s not been hospitalized. Our disappointment was when we asked an out starting her on Orkambi. She has correct genes codes but we were told it’s too expensive and not covered. I asked how much and the nurse 250000.yearly. well we obviously aren’t able to cover the cost. So she goes without this drug that practically reverses the defect. I am writing to Christine Elliot our Minister of Health with a mere hope of getting a reply or action.