Overwatch Report

Cystic Fibrosis Ireland

September–December

[Health] Access to Kaftrio drug therapy for 35 children with CF

Public Officials Lobbied

{'name': 'Stephen Donnelly', 'role': 'Minister (Department of Health)'}

Cystic Fibrosis Ireland

January–April

[Health] Photoshoot and advocacy with 53 TDs and Senators in Buswells Hotel 13 March re Beaumont 20 bed inpatient unit and soft opt out organ donation

Public Officials Lobbied

{'name': 'Jack Chambers', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': 'Alan Kelly', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': "Darragh O'Brien", 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': "Kieran O'Donnell", 'role': 'Senator (Seanad)'} {'name': 'Maria Byrne', 'role': 'Senator (Seanad)'} {'name': 'Tommy Broughan', 'role': 'TD (Dáil Éireann, the Oireachtas)'}

Cystic Fibrosis Ireland

January–April

[Health] 20 February Meeting with Minister Finian McGrath re Beaumont

Public Officials Lobbied

{'name': 'Finian McGrath', 'role': 'Minister of State (Department of Health)'}

Cystic Fibrosis Ireland

January–April

[Health] Informal Meeting with Simon Harris in Dundalk as part of his participation to the annual CFI conference on 07 April

Public Officials Lobbied

{'name': 'Simon Harris', 'role': 'Minister (Department of Health)'}

Cystic Fibrosis Ireland

May–August

[Transport] Lobbying TDs to secure support for promised replacement transport schemes

Public Officials Lobbied

{'name': 'Finian McGrath', 'role': 'Minister of State (Department of Health)'} {'name': 'Charlie McConalogue', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': 'Éamon Ó Cuív', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': 'Catherine Murphy', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': 'Róisín Shorthall', 'role': 'TD (Dáil Éireann, the Oireachtas)'} {'name': 'Michael Healy-Rae', 'role': 'TD (Dáil Éireann, the Oireachtas)'} + 14 more

Cystic Fibrosis Ireland

September–December

[Health] Meeting in AV Room Leinster House facilitated by Senator Catherine Noone

Public Officials Lobbied

{'name': 'Catherine Noone', 'role': 'Senator (Seanad)'}

Cystic Fibrosis Ireland

January–April

[Health] Lobbying for an agreement between the HSE and Vertex Pharmaceuticals for the provision of Orkambi and Kalydeco drug therapies

Public Officials Lobbied

{'name': 'Meeting All Oireachtas Members', 'role': "Meetings with TD's aimed at raising awareness about the reimbursement of key CF drugs"} {'name': 'Meeting All Oireachtas Members', 'role': "Meeting with TD's in AV Room Leinster House"} {'name': 'Lobby day All Oireachtas Members', 'role': 'Support of 3 protests organised by Jillian McNulty in December 2016, February 2017 and April 2017'}

Cystic Fibrosis Ireland

January–April

[Health] CFI undertook lobbying in relation to access to new and innovative medications including the drug therapies Orkambi and the extension of Kalydeco.

Public Officials Lobbied

{'name': 'Lobby day All Oireachtas Members', 'role': "Meetings with TD's in the Oireachtas. Issuing statements to the national media. Undertaking press interviews."} {'name': 'Submission All Oireachtas Members', 'role': 'Circulation of information to support access to Orkambi and Kalydeco drugs'} {'name': 'Simon Harris', 'role': 'Minister (Department of Health)'} {'name': 'Finian McGrath', 'role': 'Minister of State (Department of Health)'}

Cystic Fibrosis Ireland

May–August

[Health] Lobbying to ensure that the Management of Beaumont Hospital would progress the commitment in the programme for government

Public Officials Lobbied

{'name': 'Simon Harris', 'role': 'Minister (Department of Health)'} {'name': 'Finian McGrath', 'role': 'Minister of State (Department of Health)'}

Cystic Fibrosis Ireland

September–December

[Health] Lobbying TDs, Senators and County Councillors to secure support for soft opt out consent to organ donation in the upcoming Human Tissue Bill

Public Officials Lobbied

{'name': 'Email All Oireachtas Members', 'role': ''}

Cystic Fibrosis Ireland

September–December

[Health] Letter to Ministers' of Health Harris and McGrath and to the lead re importance of Government keeping its commitment to Beaumont Hospital in December 2017

Public Officials Lobbied

{'name': 'Simon Harris', 'role': 'Minister (Department of Health)'} {'name': 'Finian McGrath', 'role': 'Minister of State (Department of Health)'}

Cystic Fibrosis Ireland

January–April

[Health] Meeting with Minister Leo Varadkar and senior officials in Department of Health in relation to Cystic Fibrosis services and facilities in Ireland

Public Officials Lobbied

{'name': 'Submission All Oireachtas Members', 'role': 'A petition of some 40,000 people was given to the Minister \nA written submission was given to the Minister collected by patients but not coordinated by CFI'} {'name': 'Leo Varadkar', 'role': 'Minister (Department of Health)'} {'name': 'Leo Varadkar', 'role': 'TD (Dáil Éireann, the Oireachtas)'}

Cystic Fibrosis Ireland

May–August

[Health] In relation to access to new therapies; understaffing in Cystic Fibrosis Centres; sustaining the lung transplant programme and related transplant and donor issues including soft opt out and CF hospital infrastructure

Public Officials Lobbied

{'name': 'Simon Harris', 'role': 'Minister (Department of Health)'}

Cystic Fibrosis Ireland

September–December

[Health] National Rare Disease Plan Oversight Group

Public Officials Lobbied

{'name': 'Dr John Devlin', 'role': 'Chief Medical Officer (Department of Health)'}

Lobbying Tracker

Most Lobbied TDs