Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 20 Jan, 2018

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2017 to 31 Dec, 2017

Specific Details 1.ILFA submission to the public consultation on The Human Tissue Bill 2.ILFA invited Minister McGrath to launch the ‘ILFA 15’ special edition magazine 3.ILFA met Minister Harris to discuss soft opt-out organ donation system 4.ILFA wrote to Minister Harris to thank him for September meeting/to confirm details of same 5.ILFA wrote to Ministers Harris /McGrath re lack of funding for resources 6.ILFA contacted Minister Harris office re lack of allocated funding by phone /email

Intended results 1.To give ILFA'a position on the introduction of a soft opt-out system for organ donation. 2. Invitation to Minister Finian McGrath to oficially launch 'ILFA 15' magazine. 3.ILFA met with Minister Simon Harris on 21 September to discuss the soft opt-out organ donation system. 4.ILFA wrote to thank Minister Harris for the September meeting and to reiterate the need to further engage with ODTI officials. 5.ILFA wrote to Ministers Harris and McGrath, to highlight ILFA’s concerns around the lack of additional funding made available in the budget for resources, for the Transplant Unit, at the Mater Misericordiae hospital. 6.ILFA contacted the office of Minister Harris on 30 November by phone and email, to ask if there was any possible surplus in the budget that could be made available for the National Transplant Unit at the Mater.

Name of person primarily responsible for lobbying on this activity Nicola Cassidy, Gemma O'Dowd

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? No

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Social Media (2-5)

In September the Irish Lung Fibrosis Association (ILFA) made a submission to the public consultation on The Human Tissue Bill that includes Organ Donation and Transplantation, and encouraged others to do the same on our social media.

Letter (1)

The Irish Lung Fibrosis Association (ILFA) wrote to Minister Finian McGrath on 6 September 2017, inviting him to launch the ‘ILFA 15’ special edition magazine taking place on Friday 22 September, in Buswells Hotel, Molesworth Street, Dublin 2. He was unavailable to attend.

Meeting (1)

The Irish Lung Fibrosis Association (ILFA) met with Minister Simon Harris on 21 September at Leinster House to discuss the soft opt-out organ donation system. Nicola Cassidy, David Crosby and Pamela Martin attended. There were emails back and forth organising with the Ministers office, confirming meeting details and attendees.

Letter (1)

ILFA wrote to Minister Harris on 17 October, to thank him for the meeting in September, confirming details discussed at the meeting and to reiterate the need to further engage with ODTI officials.

Letter (2-5)

On 13 November the Irish Lung Fibrosis Association (ILFA) wrote to Minister Simon Harris and Minister Finian McGrath, following the budget announcement, outlining ILFA’s concerns around the lack of additional funding made available for resources for the Transplant Unit, at the Mater Misericordiae Hospital, following confirmation of that funding of €1.6m was applied for it, in the budget submission. No response to date.

Phone call (2-5)

The Irish Lung Fibrosis Association (ILFA) contacted the office of Minister Harris on 30 November by phone and email, to ask if there was any possible surplus in the budget that could be made available for the National Transplant Unit at the Mater, which would be crucial for resources related to the soft opt-out consent system. No response to date.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Simon Harris Minister (Department of Health)

Finian McGrath Minister of State (Department of Health)