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Lobbying Records (Page 1 of 1)
2025-08-29
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 & Methods:
| Method | Description |
|---|---|
| — | SMA and adult access to treatment |
2025-05-03
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 & Methods:
| Method | Description |
|---|---|
| — | SMA and adult access to treatment |
2024-12-07
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 & Methods:
| Method | Description |
|---|---|
| — | SMA and adult access to treatment |
2024-08-30
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 & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2024-05-01
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 & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2024-01-13
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 & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2023-09-04
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 & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2023-04-29
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 & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2022-12-07
Politician(s) lobbied: Unknown
Intent: Expand number of conditions screened for in heelprick test
Methods: Event / Reception
Details & Methods:
| Method | Description |
|---|---|
| — | Rare diseases and newborn screening of babies |
2021-01-13
Politician(s) lobbied: Anne Rabbitte (Minister of State), Department of Children, Equality, Disability, Integration and Youth; Mary Butler (Minister of State), Department of Health; Stephen Donnelly (Minister), Department of Health
Intent: For adults with SMA to be treated equally as children with this condition
Methods: Email
Details & Methods:
| Method | Description |
|---|---|
| — | Access for adults to compassionate use programme for SMA drug |