Alpha One Foundation

Lobbying Organisation Alpha One Foundation

Date published 03 May, 2017

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 Jan, 2017 to 30 Apr, 2017

Specific Details Reimbursement of Respreeza, a new therapy for Alpha-1 Antitrypsin Deficiency patients. This followed an NCPE assessment not to reimburse this therapy by the department of Health.

Intended results Representation for 21 Alpha-1 patients that are receiving this therapy on a compassionate based programme from CSL Behring. Also for another 40 Alpha-1 patients who would also benefit from this therapy.

Name of person primarily responsible for lobbying on this activity Kitty O'Connor, CEO, Alpha One Foundation

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? Yes

What is the directive you gave to the grassroots campaigners? We suggested that Alpha-1 patient may like to make representation to their local public officials.

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (21-30)

Emailed TD's and Senators in relation to access of new therapies (RESPREEZA) for Alpha-1 Antitrypsin Deficiency patients.

Email (21-30)

Emailed TD's and Senators in relation to an AV room briefing in Leinster House on 12th April 2017

Letter (21-30)

Letters sent to Minsters and member of the Oireachtas Health Committee and the Health Service Executive (HSE) in relation to access of new therapies ( RESPREEZA) for Alpha-1 Antitrypsin Deficiency 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.

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Simon Harris Minister (Department of Health)

Clare Daly TD (Dáil Éireann, the Oireachtas)

Michael Harty TD (Dáil Éireann, the Oireachtas)

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

John Dolan Senator (Seanad)

Micheál Martin TD (Dáil Éireann, the Oireachtas)

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

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

John Brassil TD (Dáil Éireann, the Oireachtas)

Mary Butler TD (Dáil Éireann, the Oireachtas)

Seán Sherlock TD (Dáil Éireann, the Oireachtas)

Aindrias Moynihan TD (Dáil Éireann, the Oireachtas)

Declan Breathnach TD (Dáil Éireann, the Oireachtas)

Gerry Adams TD (Dáil Éireann, the Oireachtas)

Fiona O'Loughlin TD (Dáil Éireann, the Oireachtas)

Colm Burke Senator (Seanad)

Paul Daly Senator (Seanad)

Robbie Gallagher Senator (Seanad)

Keith Swanick Senator (Seanad)

Mattie McGrath TD (Dáil Éireann, the Oireachtas)

David Stanton Minister of State (Department of Justice and Equality)

Eamon Scanlon TD (Dáil Éireann, the Oireachtas)

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

Jackie Cahill TD (Dáil Éireann, the Oireachtas)

Róisín Shortall TD (Dáil Éireann, the Oireachtas)

Timmy Dooley TD (Dáil Éireann, the Oireachtas)

Paul Ward Councillor (Kildare County Council)

Darragh O'Brien TD (Dáil Éireann, the Oireachtas)

John Curran TD (Dáil Éireann, the Oireachtas)

James Lawless TD (Dáil Éireann, the Oireachtas)

Peter Fitzpatrick TD (Dáil Éireann, the Oireachtas)

Peter Burke TD (Dáil Éireann, the Oireachtas)

Enda Kenny Taoiseach (Department of the Taoiseach)