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Lobbying Records (Page 1 of 1)
2022-01-10
Politician(s) lobbied: Micheál Martin (Taoiseach), Dáil Éireann, the Oireachtas; Stephen Donnelly (TD), Dáil Éireann, the Oireachtas
Intent: Prioritization of vulnerable group with medical condition called Alpha-1 Antitrypsin Deficiency for receipt of a booster shot of Covid19 vaccine
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | Lobbied ministers to prioritize the booster vaccine for vulnerable groups specifically those with Alpha-1 Antitrypsin Deficiency |
| — | These patients suffer with sever COPD |
| — | Emphysema and other lung diseases which may make them particularly vulnerable to the effects of COVID 19 |
2021-04-29
Politician(s) lobbied: Stephen Donnelly (Minister), Department of Health
Intent: Patients with serious Alpha-1 antitrypsin deficiency specifically ZZ and SZ types to be moved to group 4 cohort for vaccination
Methods: Letter
Details & Methods:
| Method | Description |
|---|---|
| — | Change to public policy related to the distribution of the COVID vaccine to high risk groups with an underyling health condition. In this case it was related to people diagnosed with Alpha-1 Antitrypsin Deficiency. This is a genetic condition which can affect the lungs and can cause COPD which creates a very high risk of severe illness requiring hospitalisation in the event of contracting COVID-19. Consultant for the condition would determine those patients requiring early vaccination. |
2019-08-21
Politician(s) lobbied: Mary Butler (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (TD), Dáil Éireann, the Oireachtas
Intent: Help with support for relocation of patient from Waterford to Galway under HAP scheme. Patient required move in order to secure a place on the lung transplant list
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | Contacted 2 politicians requesting help for ALpha-1 Patient regarding lung transplant list and request for assistance with relocation to new social houseing |
Politician(s) lobbied: John Brassil (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Micheál Martin (TD), Dáil Éireann, the Oireachtas
Intent: Payment and administration approval for Respreeza for Alpha1 patients for the rest of their lives - permanent compassionate use programme
Methods: Email, Phone call
Details & Methods:
| Method | Description |
|---|---|
| — | Request support for HSE and Phama company supply and administration for Respreeza for 19 Alpha1 patients |
2018-09-20
Politician(s) lobbied: John Brassil (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Simon Harris (Minister), Department of Health; Micheál Martin (TD), Dáil Éireann, the Oireachtas
Intent: Reimbursement by the HSE for a therapy for approximated 60 patients with a genetic condition called Alpha-1 Antitrypsin Deficiency
Methods: Email, Meeting
Details & Methods:
| Method | Description |
|---|---|
| — | Communication to political representatives related to the reimbursement of a Therapy for Alpha-1 patients |
Politician(s) lobbied: Micheál Martin (TD), Dáil Éireann, the Oireachtas; Simon Harris (Minister), Department of Health; John Brassil (TD), Dáil Éireann, the Oireachtas; Alan Kelly (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; John Curran (TD), Dáil Éireann, the Oireachtas; Billy Kelleher (TD), Dáil Éireann, the Oireachtas
Intent: Detailed update on outcome of the meeting detailed above and proposed plan for 19 ALPHA One patients.::Commitment that the HSE would continue to fund the administration of the therapy supplied free of charge by the Pharma company
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | Emails to Simon Harris requesting a meeting to discuss the funding of Respreeza for 19 Alpha One patients |
| — | and to get an update from him on thge outcome of a meeting between the HSE and CSL Behring the Pharmaceutical company who developed and supplied the therapy. |
Politician(s) lobbied: 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
Intent: 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
Methods: Email, Meeting
Details & Methods:
| Method | Description |
|---|---|
| — | 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. |
2017-07-26
Politician(s) lobbied: 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; Simon Coveney (TD), Dáil Éireann, the Oireachtas; Seán Canney (TD), Dáil Éireann, the Oireachtas; Richard Bruton (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
Intent: To highlight the need for negotiations in relation to access of Respreeza for Alpha-1 patients in Ireland
Methods: Social Media
Details & Methods:
| Method | Description |
|---|---|
| — | 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. |
2017-05-03
Politician(s) lobbied: 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
Intent: 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.
Methods: Email, Letter
Details & Methods:
| Method | Description |
|---|---|
| — | 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. |