Kyowa Kirin International (Kyowa Kirin Limited)

Lobbying Organisation Kyowa Kirin International

Date published 13 May, 2022

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Jan, 2022 to 30 Apr, 2022

Specific Details Raise awareness of Cutaneous T-cell Lymphoma (CTCL), the experience of patients and the ultra-rare nature of the condition including the high unmet need. Highlighted the challenges associated with bringing treatments to patients with very rare conditions in Ireland and the importance of recent developments with respect to improving access for patients, and the need for these to deliver improvements to patients in Ireland.

Intended results Raise awareness of Rare Lymphomas such as Cutaneous T-Cell Lymphoma. Raise awareness of the importance of patient involvement in the reimbursement process to ensure the patient voice is represented Raise awareness of the need for progress in the use of rare disease data registries as called for in the National Rare Disease Plan for Ireland 2014-2018

Name of person primarily responsible for lobbying on this activity Victoria Hayes, Director of Public Affairs

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.

Virtual Meeting (1)

One meeting with Colm Burke TD to discuss the challenges in access to medicines for patients with rare diseases on 11 January 2022 which took place virtually. Following this meeting, Mr Burke kindly agreed to ask the Minister to clarify progress on developing rare disease data registries and involvement of patients and carers in the health technology appraisal process for rare disease treatments.

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.

Colm Burke TD (Dáil Éireann, the Oireachtas)