Health Research Charities Ireland

Lobbying Organisation Health Research Charities Ireland

Date published 20 Sep, 2018

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 May, 2018 to 31 Aug, 2018

Specific Details Briefing Deputy O'Reilly on the work of the MRCG and IPPOSI with regard to access to medicines, and in particular the difficulties associated with patients access to orphan drugs. Presented Deputy O'Reilly with copies of the Drug Iceberg Report V.1 and V.2.

Intended results That Deputy O'Reilly as Vice Chair of the Joint Oireachtas Committee for Health, would be fully informed of the patients perspective of the difficulties surrounding access to medicines

Name of person primarily responsible for lobbying on this activity Dr Avril Kennan

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.

Meeting (1)

Meeting took place on May 15th 2018 at 12pm, Leinster House. Representatives of IPPOSI, MRCG, and Rare Disease Ireland were in attendance as the relevant umbrella bodies representing patients in Ireland.

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.

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