Politician(s) lobbied: Michael Healy-Rae (Minister of State), Department of Agriculture, Food and the Marine; Naoise O'Cearúil (TD), Dáil Éireann, the Oireachtas; Cian O'Callaghan (TD), Dáil Éireann, the Oireachtas; Thomas Gould (TD), Dáil Éireann, the Oireachtas; Shónagh Ní Raghallaigh (TD), Dáil Éireann, the Oireachtas; Roderic O'Gorman (Minister), Department of Children, Equality, Disability, Integration and Youth; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Paul Lawless (TD), Dáil Éireann, the Oireachtas; James O'Connor (TD), Dáil Éireann, the Oireachtas; Albert Dolan (TD), Dáil Éireann, the Oireachtas; Ruth Coppinger (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; William Aird (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas
Intent: Swift implementation of SMA and SCID in NBS bloodspot screening programme
Methods: Email
Details by Method
Email
To raise specific parliamentary questions on the subject of newborn screening
Politician(s) lobbied: Michael Healy-Rae (Minister of State), Department of Agriculture, Food and the Marine; Naoise O'Cearúil (TD), Dáil Éireann, the Oireachtas; Cian O'Callaghan (TD), Dáil Éireann, the Oireachtas; Thomas Gould (TD), Dáil Éireann, the Oireachtas; Shónagh Ní Raghallaigh (TD), Dáil Éireann, the Oireachtas; Roderic O'Gorman (Minister), Department of Children, Equality, Disability, Integration and Youth; Duncan Smith (TD), Dáil Éireann, the Oireachtas; Marie Sherlock (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Paul Lawless (TD), Dáil Éireann, the Oireachtas; James O'Connor (TD), Dáil Éireann, the Oireachtas; Albert Dolan (TD), Dáil Éireann, the Oireachtas; Ruth Coppinger (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; William Aird (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Ryan O'Meara (TD), Dáil Éireann, the Oireachtas
Intent: Swift implementation of SMA and SCID in NBS bloodspot screening programme
Methods: Email
Details by Method
Email
To raise specific parliamentary questions on the subject of newborn screening
Politician(s) lobbied: Colm Burke (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Hildegarde Naughton (TD), Dáil Éireann, the Oireachtas; Barry Ward (TD), Dáil Éireann, the Oireachtas; Paul Murphy (TD), Dáil Éireann, the Oireachtas
Intent: Individuals with SMA who were <18yo when the medicine was approved continue to receive treatment into adulthood. However, their peers who were over 18 are excluded from treatment. This injustice continues, With a small number of adults excluded from treatment. We are campaigning to see that these adults are not discriminated from treatment simply according to age.
Methods: Unknown
Details by Method
Method not specified
SMA and adult access to treatment
Politician(s) lobbied: Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas
Intent: To get access to SMA medicine for the 20 or so adults currently excluded on the grounds that they were over 18 when the medicine was approved.
Methods: Email
Details by Method
Email
Email to request support to secure the AV room at Leinster House to give the presentation on adult access to SMA medicine.
Politician(s) lobbied: Unknown
Intent: Expand access to drugs currently available to under 18's Suffering from spinal muscular atrophy to the small number of adults who have thus far been excluded.
Methods: Email
Details by Method
Email
SMA Ireland wrote to every election candidate by email. SMA Ireland members took it upon themselves to write to Election candidates in their constituency.
Politician(s) lobbied: John Brady (TD), Dáil Éireann, the Oireachtas; Neale Richmond (TD), Dáil Éireann, the Oireachtas; Josepha Madigan (TD), Dáil Éireann, the Oireachtas; Micheál Carrigy (Senator), Seanad; Roderic O'Gorman (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Ged Nash (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Michael Creed (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; Seán Sherlock (TD), Dáil Éireann, the Oireachtas; Robbie Gallagher (Senator), Seanad
Intent: following the approval of SCID and SMA for inclusion in the newborn screening programme, we continue to campaign for implementation.
Methods: Email
Details by Method
Email
emailed public officials who had previously shown support/interest in our campaign and asked them to submit parliamentary questions on the subject of implementation of newborn screening for SMA
Politician(s) lobbied: Colm Burke (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Stephen Donnelly (Minister), Department of Health
Intent: Swift implementation of SMA and SCID in NBS bloodspot screening programme
Methods: Email
Details by Method
Email
Requesting a meeting with the Minister for health, Stephen Donnelly, on the subject of newborn screening implementation
Email
To raise specific parliamentary questions on the subject of newborn screening
Politician(s) lobbied: Josepha Madigan (TD), Dáil Éireann, the Oireachtas; John Brady (TD), Dáil Éireann, the Oireachtas; Neale Richmond (TD), Dáil Éireann, the Oireachtas; Micheál Carrigy (Senator), Seanad; Roderic O'Gorman (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Ged Nash (TD), Dáil Éireann, the Oireachtas; Anne Rabbitte (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; Michael Collins (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Michael Creed (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas; Seán Sherlock (TD), Dáil Éireann, the Oireachtas; Robbie Gallagher (Senator), Seanad
Intent: to see spinal muscular atrophy added to newborn screening heel prick test in Ireland
Methods: Email
Details by Method
Email
update on campaign progress and email thanks following initial approval by Minister for health
Politician(s) lobbied: Michael Collins (TD), Dáil Éireann, the Oireachtas; John Brady (TD), Dáil Éireann, the Oireachtas; David Cullinane (TD), Dáil Éireann, the Oireachtas; Neasa Hourigan (TD), Dáil Éireann, the Oireachtas; Holly Cairns (TD), Dáil Éireann, the Oireachtas; Michael Healy-Rae (TD), Dáil Éireann, the Oireachtas; Ged Nash (TD), Dáil Éireann, the Oireachtas; Michael Creed (TD), Dáil Éireann, the Oireachtas; Richard Boyd Barrett (TD), Dáil Éireann, the Oireachtas; John Lahart (TD), Dáil Éireann, the Oireachtas; Gino Kenny (TD), Dáil Éireann, the Oireachtas
Intent: addition of SMA to newborn screening blood spot test
Methods: Email
Details by Method
Email
request assistance raising subject of SMA in newborn screening in Parliament
Politician(s) lobbied: Pádraig O'Sullivan (TD), Dáil Éireann, the Oireachtas; Pauline Tully (TD), Dáil Éireann, the Oireachtas; Colm Burke (TD), Dáil Éireann, the Oireachtas
Intent: To see spinal muscular atrophy added to the newborn screening heel prick test without further delay.
Methods: Email
Details by Method
Email
Respectfully asked TD to consider raising Parliamentary question on the topic of SMA and newborn screening.
