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PE01399: Equitable access to therapy for Pompe disease

Health

Petitioner: Allan Muir on behalf of Association for Glycogen Storage Disease (UK) Ltd

Status:
Closed

Date Lodged: 02 September 2011

Calling on the Scottish Parliament to urge the Scottish Government to instruct the Chief Medical Officer (CMO) to revise the criteria to access IPTRs for Orphan diseases as these criteria are detrimental to patients suffering from Pompe disease.

Petition History:

Summary:

4 October 2011: The Committee took evidence from Alastair Kent, Chair, Rare Disease UK, Joan Fletcher, Family Support Officer, Association for Glycogen Storage Disease UK and Dr Lindsay Mitchell, Consultant Haematologist, Monklands Hospital, Airdrie and agreed to write to the Scottish Government, Procurement Scotland, the Scottish Medicines Consortium, NHS Greater Glasgow and Clyde, NHS Ayrshire and Arran and other NHS boards seeking responses to points raised in the petition and during the discussion. Link to Official Report 4 October 2011 (472KB pdf)

13 December 2011: The Committee agreed to write to the Scottish Government. Link to Official Report 13 December 2011 (470KB pdf)

6 March 2012: The Committee agreed to refer the petition to the Health and Sport Committee, under Rule 15.6.2, for further consideration of the issues raised in the petition. Link to Official Report 6 March 2012 (285KB pdf)

27 March 2012: The Health and Sport Committee took evidence from—

Stephen Nutt, Executive Officer, Rare Disease UK;

Joan Fletcher, Family Support Officer, Association for Glycogen Storage Disease (UK);

Lesley Loeliger, Founder and Chair, PNH Scotland. Link to Official Report 27 March 2012 (442KB pdf)

27 March 2012 (in private): The Health and Sport Committee considered its approach to future scrutiny of the issues raised in relation to the petitions and agreed to write to the Scottish Government and the Scottish Medicines Consortium.

12 June 2012: The Health and Sport Committee noted correspondence on the Petitions from the Scottish Medicines Consortium, NHS National Services Division, the Scottish Government and petitioners. The Committee agreed to consider the petitions again following its meeting on 18 September 2012. Link to Official Report 12 June 2012 (294KB pdf)

The Health and Sport Committee considered this petition, along with PE1398 and PE1401 as part of its Inquiry on access to new medicines. In December 2015, the Health and Sport Committee sought views on the effectiveness of the changes made to the system of approving new medicines. Following consideration of the views submitted, the Health and Sport Committee agreed at its meeting on 8 March 2016 to close the petition on the basis that the changes have been broadly welcomed, that a review of the effectiveness of the system is to be carried out and that the issue of access to new medicines will be a work in progress.

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