Irish Lung Fibrosis Association

Lobbying Organisation Irish Lung Fibrosis Association

Date published 21 May, 2020

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2020 to 30 Apr, 2020

Specific Details ILFA prepared a lobbying document in advance of the 2020 general election that was shared on the ILFA website, and on our social media channels for our members to access.

Intended results For ILFA patients and members to get better access to medical cards, oxygen supplies, the introduction of an opt out organ donation system, healthcare inclusivity for lung fibrosis patients and funding for the national IPF Registry and and more health resources funding.

Name of person primarily responsible for lobbying on this activity Nicola Cassidy, Director of the Irish Lung Fibrosis Association (ILFA)

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 (1)

ILFA follows Ministers Simon Harris TD, Leo Varadkar TD and Simon Coveny TD and some other TDs and MEPs on social media and has tagged, liked and retweeted some of the Ministers posts in relation to the Covid 19 pandemic. Simon Harris liked two tweets that ILFA shared on our Twitter account.

Social Media (2-5)

Letter (1)

Representatives from ILFA wrote to the HSE and Department for Health regarding the omission of lung fibrosis as an extremely medically vulnerable condition as part of the cocooning guidelines. This omission was highlighted in some tweets to Simon Harris TD and Facebook posts. A patient advocate known to ILFA also contacted Simon Harris TD and Finian McGrath independently to request help with getting lung fibrosis deemed an extremely medically vulnerable condition

Informal communication (1)

Minister Simon Harris TD is on the ILFA mailing list and would have received a printed copy of our Spring newsletter in April 2020.

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)

Simon Coveney Tánaiste and Minister (Department of Foreign Affairs)

Leo Varadkar Taoiseach (Department of the Taoiseach)