Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 16 Sep, 2020

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2020 to 31 Aug, 2020

Specific Details Illness Benefit for Cocooning People in conjunction with the Irish Cancer Society and other vulnerable groups

Intended results To highlight illness benefit for a vulnerable group and raise this issue in the NPHET

Name of person primarily responsible for lobbying on this activity Nicola Cassidy, Irish Lung Fibrosis Association

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.

Letter (1)

ILFA was a co-signatory on a letter from the Irish Cancer Society and other patient groups to Minister Regina Doherty, Department of Employment Affairs and Social Protection regarding illness benefit for those cocooning.

Letter (1)

ILFA wrote to Minister Donnelly, Minister for Health in July 2020 requesting a meeting to discuss a ‘Clinical Care Programme and National IPF Registry and the Opt-out organ donation consent model and in support of the Irish Thoracic Society (ITS).

Letter (1)

ILFA continued to correspond with the Health Protection Surveillance Centre (HPSC) to have lung fibrosis listed as an extremely medically vulnerable condition.

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.

Regina Doherty TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly Minister (Department of Health)