Irish Haemochromatosis Association

Lobbying Organisation Irish Haemochromatosis Association

Date published 20 May, 2020

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2020 to 30 Apr, 2020

Specific Details €80 unfair Venesection Charge for Haemochromatosis patients who don't have a medical card or private insurance

Intended results We specifically requested that individual politicians and public representatives include a committment to bring this to the Dail for discussion or include the matter in their health manifestos prior to election

Name of person primarily responsible for lobbying on this activity Margaret Mullett, Chair, IHA and Miriam Forde, Executive Director, IHA

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.

Email (11-20)

Margaret Mullett and Miriam Forde emailed politicians and public representatives to ask them to discuss the unfair venesection charge of €80 per venesection for haemochromatosis patients who have neither a medical card or private insurance. This is an unnecessary burden for many patients who may need up to 4 venesections per month in some cases.

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)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Catherine Byrne TD (Dáil Éireann, the Oireachtas)

Frank Feighan TD (Dáil Éireann, the Oireachtas)

Declan Ryan Adviser to Minister (Department of Health)

Louise O'Reilly TD (Dáil Éireann, the Oireachtas)

Caoimhghín Ó Caoláin TD (Dáil Éireann, the Oireachtas)

Róisín Shorthall TD (Dáil Éireann, the Oireachtas)

Richard Boyd Barrett TD (Dáil Éireann, the Oireachtas)

Eamon Ryan TD (Dáil Éireann, the Oireachtas)

Micheál Martin Taoiseach (Dáil Éireann, the Oireachtas)

Mary Butler TD (Dáil Éireann, the Oireachtas)