Irish Haemochromatosis Association

Lobbying Organisation Irish Haemochromatosis Association

Date published 20 Jan, 2020

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2019 to 31 Dec, 2019

Specific Details Email communication to Simon Harris, Alan Kelly and Stephen Donnelly ref - Unjust charge for venesection for patients with Haemochromatosis. This communication via email was sent by our Chair, Margaret Mullett.

Intended results Objective - that Simon Harris and other elected representatives would relook at hospital charges within the HSE/Department of Health and agree to remove this unjust charge of €80 per venesection for Haemochromatosis patients which is being unfairly charged to patients who have neither a medical card or private health insurance. In some cases patients may have to pay €80 per week, for up to a year when initially diagnosed with haemochromatosis.

Name of person primarily responsible for lobbying on this activity Chair of Irish Haemochromatosis Association - Margaret Mullett

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 (2-5)

Email to Simon Harris, Alan Kelly and Stephen Donnelly regarding an unjust charge of €80 per venesection for Haemochromatosis patient members who have neither a medical card or private health insurance and who may undergo up to four venesections per month. We asked Simon Harris, Alan Kelly and Stephen Donnelly to assist the Irish Haemochromatosis Association and its members in removing this unfair burden on patients.

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)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)