Received: 14 July 2018
Accepted: 29 May 2019
First Online: 17 June 2019
Ethics approval and consent to participate
: The study was approved by the Hunter New England LHD ethics committee. All participants provided written consent for their information to be used and to deidentified data to be published. Subjects agreed to participate with written informed consent.
: Vertex supplied the medication to patients through a compassionate access programme. However, they did not fund the investigators and played no role in devising the investigations or writing the manuscript.The authors; PW, KC, JB and TT are employees of Hunter New England LHD.PW is an associate editor for the journal <i>BMC Pulmonary Medicine</i>.There are no other competing interests to declare.