Meetings

P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

This page gives details of any meetings held which will, or did, discuss the matter, and includes links to the relevant Papers, Agendas and Minutes.

Note: Meeting Agenda can change at short notice. Particularly where future meeting dates are indicated more than a week in advance. Please check before planning to attend a Committee Meeting that the item you are interested in has not been moved.

 

 

Meeting: 07/01/2020 - Petitions Committee - Fifth Senedd (Item 4)

4 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The paper was noted.

Meeting: 19/11/2019 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered further correspondence and agreed to close the petition in light of the agreement reached to make Orkambi available to patients in Wales, and to offer their thanks and congratulations to the petitioner and the CF Trust on the successful outcome to their campaigning.

Meeting: 01/10/2019 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered further evidence and agreed to await Vertex Pharmaceuticals’ submission of evidence relating to Orkambi to the All Wales Medicines Strategy Group, which the Committee understands to be imminent, before seeking further updates.

 

Meeting: 09/07/2019 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from Vertex Pharmaceuticals and agreed to:

  • await a further update from Vertex Pharmaceuticals and confirmation that its evidence has been formally submitted for appraisal; and
  • write to the All Wales Medicines Strategy Group to seek information about the request by Vertex to submit evidence for appraisal on Orkambi as well as Symkevi as well as details of its discussion with the company in relation to appraisal of its cystic fibrosis treatments.

 

Meeting: 11/06/2019 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered further correspondence from the Welsh Government, the Cystic Fibrosis Trust and the petitioner and agreed to write to Vertex Pharmaceuticals to urge them to make a submission of evidence to the All-Wales Medicines Strategy Group for appraisal as a priority.

Meeting: 02/04/2019 - Petitions Committee - Fifth Senedd (Item 4)

4 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered further correspondence on the petition and agreed to keep a watching brief on developments in Wales and across the UK. The Committee also agreed to write to the Minister for Health and Social Services to ask for his view on the possibility of issuing a Crown licence pursuant to provisions contained within the Patents Act 1977 to potentially make use of the patent for Orkambi without the authorisation of the patent holder, if the current impasse in discussions cannot be resolved.

Meeting: 29/01/2019 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from Vertex and the Cystic Fibrosis Trust, and agreed to write to the Minister for Health and Social Services to ask him to consider whether there is an appropriate method for providing interim access to patients who would benefit from Orkambi, in light of the resumption of discussions with the company over the long-term availability of the medicine on the NHS.

 

Meeting: 27/11/2018 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from the Cabinet Secretary for Health and Social Services together with further comments from the petitioner and agreed to:

 

  • write to Vertex Pharmaceuticals to urge them to make a submission to NHS Wales or the All Wales Medicines Strategy Group for a specific arrangement to make Orkambi available to patients in Wales for either an initial pilot exercise or on an ongoing basis, an indication of the timescales for doing this, or for a justification from the company if it does not intend to do so; and

·         await the action taken by the Westminster Health and Social Services Select Committee in relation to a possible inquiry into the availability of Orkambi.

Meeting: 09/10/2018 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from the Cabinet Secretary for Health and Social Services, Vertex and the petitioner and agreed to:

  • write to the Cabinet Secretary for Health and Social Services to seek his response to the proposal made by the Cystic Fibrosis Trust for the Welsh Government to implement an interim arrangement to enable access to Orkambi for patients in Wales, and to the potential use of the UK CF Registry;
  • write to Vertex Pharmaceuticals to ask them to update the Committee on the outcome of any meeting with the All Wales Medicine Strategy Group; and
  • to explore sources of further advice or expertise who could support the Committee to consider this petition further.

 

Meeting: 15/05/2018 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from the Cabinet Secretary for Health and Social Services and Vertex Pharmaceuticals, along with further comments from the petitioner, and agreed to schedule evidence sessions with the Cabinet Secretary and Vertex for a future meeting. 

 

Meeting: 13/03/2018 - Petitions Committee - Fifth Senedd (Item 3)

3 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered correspondence from the Cabinet Secretary for Health and Social Services together with further comments from the petitioner and agreed to write to:

 

·         the Cabinet Secretary to ask whether the All-Wales Medicines Strategy Group has now contacted Vertex to ask them to submit their evidence and to request an update when any response is received; and

·         Vertex, to ask them for information about discussions they have held with the Welsh Government in relation to making Orkambi available to Welsh patients.

 

Meeting: 23/01/2018 - Petitions Committee - Fifth Senedd (Item 2)

2 P-05-797 Ensure access to the cystic fibrosis medicine, Orkambi, as a matter of urgency

Supporting documents:

Minutes:

The Committee considered the petition for the first time and agreed to write back to the Minister for Health and Social Services to share the information provided by the petitioners and ask whether the more recent long-term data referred to could form part of any further consideration by the All-Wales Medicines Strategy Group, before considering whether to take oral evidence on the issue.

 

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