Alpha One Foundation

Lobbying Organisation Alpha One Foundation

Date published 28 Mar, 2018

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 Sep, 2017 to 31 Dec, 2017

Specific Details Emails related to requests for the review and reversal of a decision by the NCPE and the HSE to reimburse an augmentation therapy called Respreeza for Alpha-1 Patients. This is a genetic disease and currently 19 patients were receiving the therapy on compassionate use grounds and the compassionate use programme had come to an end.

Intended results Reversal of the decision by the HSE not to reimburse Respreeza. CSL Behring and the HSE to agree on the supply and administration of the therapy to 21 patients who were on a compassionate use programme HSE to provide funding for a 6 month period following a decision by CSL Behring to continue to provide the therapy for a 6 month period from December 2017 - June 2018

Name of person primarily responsible for lobbying on this activity Geraldine Kelly

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?) Yes

Current or Former Designated Public Official(s)

Mr John Brassil (Currently employed as a DPO) TD (Dáil Éireann, the Oireachtas)

Billy Kelleher (Currently employed as a DPO) TD (Dáil Éireann, the Oireachtas)

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)

Requesting support from TD's to put pressure on the Minister for Health Simon Harris to intervene in a decision by the HSE not to reimburse the drug Respreeza.f

Email (2-5)

Requests to meet with TD's to discuss the reimbursement of Respreeza - requesting his support

Meeting (1)

Meeting with John Brassil and Billy Kelleher to discuss the situation with Respreeza and the decision by CSL Behring to supply the therapy free of charge for a period between Dec 2017 and June 2018. Also to discuss the plan for the HSE to provide the funding to administer the therapy for this period

Meeting (1)

Meeting requested with John Brassil and the CEO for the Alpha One Foundation in the United States. Further updates provided to John Brassil on advancements in the US

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.

John Brassil TD (Dáil Éireann, the Oireachtas)

Billy Kelleher TD (Dáil Éireann, the Oireachtas)

Simon Harris Minister (Department of Health)

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

Michael Healy-Rae TD (Dáil Éireann, the Oireachtas)

John Curran TD (Dáil Éireann, the Oireachtas)

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

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Colm Burke Senator (Seanad)

Keith Swanick Senator (Seanad)

Rónán Mullen Senator (Seanad)