Health Research Charities Ireland

Lobbying Organisation Health Research Charities Ireland

Date published 21 May, 2018

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2018 to 30 Apr, 2018

Specific Details Call for 1. A new National Strategy to promote access to new & innovative drug therapies 2. Immediate direct engagement between the Dept of Health & relevant stakeholders, including patient organisations & industry, to seek consensus on drug access 3.Faster operationalisation of the Rare Diseases/Medicinal Products Technology Review Committee to consider orphan drug therapy submissions. 4.Resources for the NCPE to develop appropriate clinician & patient involvement in reimbursement/access to med

Intended results 1.An explicit commitment from Government that it is not embarking on a course of developing a de facto ‘drug rationing policy’ arising from an imbalance between the weight of views given to those in public expenditure versus those who are primarily concerned with access to better health, including better access to drug therapies in Ireland. 2.Clarification, consistency and transparency on the post-HTA phase of the drug approval process in Ireland. 3. The development and implementation of a new national strategy on access to new and innovative drug therapies in Ireland, based on the principles of fairness, equality, value for money, transparency, effectiveness and sustainability. 4. The full ring-fencing of the anticipated savings from the current and future agreements between the state and pharmaceutical companies for new, innovative and/or improved drug therapies. 5. An immediate review of the present IPhA Agreement to ensure that the savings of up to €750m will be fully realised. 6. Companies that are presently not members of IPhA be required to be part of a new and sustainable national strategy on access to new and innovative drug therapies in Ireland. 7. A clear policy on developing and resourcing patient registries to be developed 8. Greater consideration by Government of the potential of European Reference Networks (ERN’s) and the possibility of drawing on the expertise of patient bodies active at a European level regarding access to drugs debate at EU/Council of Europe level 9. Patient groups will be included in discussions on macro health policies in relation to drug assessment and reimbursement including, for example, in future agreements that presently only involve the Government and the pharmaceutical industry.

Name of person primarily responsible for lobbying on this activity Linda McGrath

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 (1)

A report titled 'Steering a course to avoid the ‘Drug iceberg’- the challenges of accessing new and innovative medicines in Ireland and the call for a new National Strategy – Version 2' was emailed to all members of the Joint Oireachtas Committee on Health on February 22nd. This report was jointly produced by the MRCG and IPPOSI.

Letter (1)

A hard copy of the report 'Steering a course to avoid the ‘Drug iceberg’- the challenges of accessing new and innovative medicines in Ireland and the call for a new National Strategy – Version 2' was posted to all member of the Joint Oireachtas Committee on Health on February 22nd.

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.

Bernard Durkan TD (Dáil Éireann, the Oireachtas)

Michael Harty TD (Dáil Éireann, the Oireachtas)

Billy Kelleher TD (Dáil Éireann, the Oireachtas)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Kate O'Connell TD (Dáil Éireann, the Oireachtas)

Margaret Murphy O'Mahony TD (Dáil Éireann, the Oireachtas)

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

Colm Burke Senator (Seanad)

John Dolan Senator (Seanad)

Rónán Mullen Senator (Seanad)

Keith Swanick Senator (Seanad)