Alpha One Foundation

Lobbying Organisation Alpha One Foundation

Date published 26 Jul, 2017

Relevant Matter Matters involving public funds

Public Policy Area Health

Period 1 May, 2017 to 31 Aug, 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 To highlight the need for negotiations in relation to access of Respreeza for Alpha-1 patients in Ireland

Name of person primarily responsible for lobbying on this activity Alpha-1 patients and Kitty O'Connor, CEO Alpha One Foundation, D2 Communications

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? Briefing documents were given to Alpha-1 patients

Was this lobbying done on behalf of a client? No

Mass communications

Email All TDs An invitation was emailed to Td's and Senators to a meeting in the AV room in relation to Alpha-1 an Respreeza in Leinster House on 12th April 2017

Social Media All Oireachtas Members TD's tweeted to outline Alpha One Foundation's disappointment at the decision by the Minister of Health to decline funding of Respreeza despite the clear benefits of the drug. Minister for Health being urged to reconsider the decision

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Social Media (2-5)

TD's tweeted (Billy Kelleher, Michael Healy -Rae) to outline Alpha One Foundation's disappointment at the decision by the Minister of Health to decline funding of Respreeza despite the clear benefits of the drug. Minister for Health being urged to reconsider the decision

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.

Gerry Adams TD (Dáil Éireann, the Oireachtas)

Seán Barrett TD (Dáil Éireann, the Oireachtas)

Richard Boyd Barrett TD (Dáil Éireann, the Oireachtas)

Tommy Broughan TD (Dáil Éireann, the Oireachtas)

Richard Bruton TD (Dáil Éireann, the Oireachtas)

Ray Butler TD (Dáil Éireann, the Oireachtas)

Jerry Buttimer TD (Dáil Éireann, the Oireachtas)

Catherine Byrne TD (Dáil Éireann, the Oireachtas)

Dara Calleary TD (Dáil Éireann, the Oireachtas)

Joe Carey TD (Dáil Éireann, the Oireachtas)

Áine Collins TD (Dáil Éireann, the Oireachtas)

Niall Collins TD (Dáil Éireann, the Oireachtas)

Michael Conaghan TD (Dáil Éireann, the Oireachtas)

Eric Byrne TD (Dáil Éireann, the Oireachtas)

Paudie Coffey TD (Dáil Éireann, the Oireachtas)

Michael Colreavey TD (Dáil Éireann, the Oireachtas)

Paul Connaughton Jr. TD (Dáil Éireann, the Oireachtas)

Noel J. Coonan TD (Dáil Éireann, the Oireachtas)

Marcella Corcoran Kennedy TD (Dáil Éireann, the Oireachtas)

Seán Conlan TD (Dáil Éireann, the Oireachtas)

Ruth Coppinger TD (Dáil Éireann, the Oireachtas)

Simon Coveney TD (Dáil Éireann, the Oireachtas)

Michael Creed TD (Dáil Éireann, the Oireachtas)

Seán Crowe TD (Dáil Éireann, the Oireachtas)

Jim Daly TD (Dáil Éireann, the Oireachtas)

John Deasy TD (Dáil Éireann, the Oireachtas)

Jimmy Deenihan TD (Dáil Éireann, the Oireachtas)

Pearse Doherty TD (Dáil Éireann, the Oireachtas)

Stephen Donnelly TD (Dáil Éireann, the Oireachtas)

Timmy Dooley TD (Dáil Éireann, the Oireachtas)

Andrew Doyle TD (Dáil Éireann, the Oireachtas)

Martin Ferris TD (Dáil Éireann, the Oireachtas)

Damien English TD (Dáil Éireann, the Oireachtas)

Frank Feighan TD (Dáil Éireann, the Oireachtas)

Frances Fitzgerald TD (Dáil Éireann, the Oireachtas)

Peter Fitzpatrick TD (Dáil Éireann, the Oireachtas)

Tom Fleming TD (Dáil Éireann, the Oireachtas)

Eamonn Gilmore TD (Dáil Éireann, the Oireachtas)

Brendan Griffin TD (Dáil Éireann, the Oireachtas)

Dominic Hannigan TD (Dáil Éireann, the Oireachtas)

Simon Harris TD (Dáil Éireann, the Oireachtas)

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

Martin Heydon TD (Dáil Éireann, the Oireachtas)

Heather Humphreys TD (Dáil Éireann, the Oireachtas)

Kevin Humphreys TD (Dáil Éireann, the Oireachtas)

Colm Keaveney TD (Dáil Éireann, the Oireachtas)

Billy Kelleher TD (Dáil Éireann, the Oireachtas)

Enda Kenny TD (Dáil Éireann, the Oireachtas)

Séamus Kirk TD (Dáil Éireann, the Oireachtas)

Michael Kitt TD (Dáil Éireann, the Oireachtas)

Frances Fitzgerald Tánaiste and Minister (Dáil Éireann, the Oireachtas)

Eamon Scanlon TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

Katherine Zappone TD (Dáil Éireann, the Oireachtas)

Michael Ring TD (Dáil Éireann, the Oireachtas)

Denis Naughten TD (Dáil Éireann, the Oireachtas)

Simon Harris TD (Dáil Éireann, the Oireachtas)

Leo Varadkar TD (Dáil Éireann, the Oireachtas)

Simon Coveney TD (Dáil Éireann, the Oireachtas)

Seán Canney TD (Dáil Éireann, the Oireachtas)

Richard Bruton TD (Dáil Éireann, the Oireachtas)

Joe McHugh TD (Dáil Éireann, the Oireachtas)

Richard Bruton TD (Dáil Éireann, the Oireachtas)

Michael Noonan TD (Dáil Éireann, the Oireachtas)

Frances Fitzgerald TD (Dáil Éireann, the Oireachtas)

Enda Kenny TD (Dáil Éireann, the Oireachtas)

Michael Creed TD (Dáil Éireann, the Oireachtas)

Donnchadh Ó Laoghaire TD (Dáil Éireann, the Oireachtas)

Maria Bailey TD (Dáil Éireann, the Oireachtas)

Katherine Zappone TD (Dáil Éireann, the Oireachtas)

Denis Naughten TD (Dáil Éireann, the Oireachtas)

Kevin "Boxer" Moran TD (Dáil Éireann, the Oireachtas)

Michael Harty TD (Dáil Éireann, the Oireachtas)

Michael Fitzmaurice TD (Dáil Éireann, the Oireachtas)

Catherine Connolly TD (Dáil Éireann, the Oireachtas)

Charles Flanagan TD (Dáil Éireann, the Oireachtas)

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

Michael Collins TD (Dáil Éireann, the Oireachtas)

Seán Canney TD (Dáil Éireann, the Oireachtas)

Eamon Ryan TD (Dáil Éireann, the Oireachtas)

Catherine Martin TD (Dáil Éireann, the Oireachtas)

Bríd Smith TD (Dáil Éireann, the Oireachtas)

Paul Murphy TD (Dáil Éireann, the Oireachtas)

Gino Kenny TD (Dáil Éireann, the Oireachtas)

Mick Barry TD (Dáil Éireann, the Oireachtas)

Seán Sherlock TD (Dáil Éireann, the Oireachtas)

Jan O'Sullivan TD (Dáil Éireann, the Oireachtas)

Alan Kelly TD (Dáil Éireann, the Oireachtas)

Brendan Howlin TD (Dáil Éireann, the Oireachtas)

Joan Burton TD (Dáil Éireann, the Oireachtas)

Maurice Quinlivan TD (Dáil Éireann, the Oireachtas)

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

Donnchadh Ó Laoghaire TD (Dáil Éireann, the Oireachtas)

Eoin Ó Broin TD (Dáil Éireann, the Oireachtas)

Carol Nolan TD (Dáil Éireann, the Oireachtas)

Denise Mitchell TD (Dáil Éireann, the Oireachtas)

Martin Kenny TD (Dáil Éireann, the Oireachtas)

Kathleen Funchion TD (Dáil Éireann, the Oireachtas)

Pat Buckley TD (Dáil Éireann, the Oireachtas)

John Brady TD (Dáil Éireann, the Oireachtas)

Niamh Smyth TD (Dáil Éireann, the Oireachtas)

Eamon Scanlon TD (Dáil Éireann, the Oireachtas)

Anne Rabbitte TD (Dáil Éireann, the Oireachtas)

Frank O'Rourke TD (Dáil Éireann, the Oireachtas)

Kevin O'Keeffe TD (Dáil Éireann, the Oireachtas)

John Lahart TD (Dáil Éireann, the Oireachtas)

Seán Haughey TD (Dáil Éireann, the Oireachtas)

Pat the Cope Gallagher TD (Dáil Éireann, the Oireachtas)

Lisa Chambers TD (Dáil Éireann, the Oireachtas)

John Curran TD (Dáil Éireann, the Oireachtas)