Latest News

Kaftrio 35

The HSE has confirmed the Health Technology Assessment for the Kaftrio 35 will be given ‘priority’. Vertex have confirmed to CFI that their dossier to inform the HTA will be submitted before the end of December 2022. CFI urges the process to be completed before the end of January 2023. CFI has written to the Joint Oireachtas Committee on Health for an urgent meeting in January.

CFI will make a patient group submission to the NCPE including outcomes from a survey (latter to be circulated before Christmas). There remains major gaps and weaknesses in the drug reimbursement system in Ireland including the failure to establish the National Medicines Agency promised in the Programme for Government.

For most comprehensive/recent analysis of the Kaftrio 35 dispute visit the Claire Byrne Show on RTE 1.

Soft Opt Out Organ donor consent

Changing the organ donor consent system in Ireland has long been an ambition of CFI working with our colleagues in the Irish Donor network (IDN). The first stage of the legislative process to enact this change was agreed by the Cabinet in recent weeks. There will be a feature on this in the next issue of Spectrum.

Organ donation and transplant progress

Legislation

On November 29th, Cabinet approval was given for the first stage of Human Tissue (Transplantation, PostMortem, Anatomical Examination and Public Display) Bill. This Bill will change organ donor consent from opt in to soft opt out. The composite Bill will, for the first time, provide a national legislative framework for operating donation and transplant services in Ireland.

Post-transplant CF Consultant for the Mater

The HSE approved the appointment of a Cystic Fibrosis Consultant at the Mater Hospital to look after People with Cystic Fibrosis post transplantation. That Consultant will be able to prescribe CF Modifier Drugs in line with HSE protocols. CFI will continue to urge this appointment as soon as possible as it has been a policy priority for us.

CF Transplant Model of Care

Launched in RCSI in November 24th, 2022, this is an important addition to the overall CF Model of Care launched in 2019. There are 2 pathways identified for post-transplant care. For those in the greater Leinster area their main centre of post-transplant care will be the Mater Hospital with the welcome addition of the forthcoming consultant (see above). A shared/hybrid model will apply to those outside the Leinster area.

Conference 2023

We would be delighted if you could join us for our

60th Anniversary Conference Dunboyne Castle March 31st - April 1st

1963 2023

The invite to the CFI Conference in the Dunboyne Hotel and Spa will be issued shortly. It will take place between 31st March and 1st April 2023 in Dunboyne Castle. The 2022 AGM will in on 1st April 2023.