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Getting Vertex Pharmaceuticals’ Orphan Drug Kalydeco (Ivacaftor) To The UK Continues (September 28, 2012 Update)

October 1, 2012

       Getting Vertex Pharmaceuticals’ orphan drug Kalydeco (Ivacaftor) to the UK is continuing. This is an update to the Orphan Druganaut September 27, 2012 Blog Post.

        The Cystic Fibrosis (CF) Trust in the UK, issues a September 28, 2012 Kalydeco Q&A with updates to the status of Kalydeco in the UK :

1)  In September 2012 in England, the Clinical Priorities Advisory Group (CPAG) met & agrees that Kalydeco is clinically effective & suitable for those with the G551D mutation.  BUT cost-effectiveness discussions are deferred until October.  After October, a report on cost-effectiveness is sent to 4 Specialist Commissioning Groups (SCGs) around England in time for meetings in December. SCGs then will give advice/guidance to Primary Care Trusts, who will be able to make a decision on funding

2)  In November 2012 in Scotland, CF Trust is to make a Patient Interest Group submission to the Scottish Medicines Agency, which approves drugs in Scotland

3)  CF Trust is “actively engaged” with the appropriate groups in Wales & Northern Ireland

4)  CF Trust met with Welsh Government Officials & the All Wales Medicines Strategy Group will be assessing Kalydeco

5)  CF Trust is launching “Campaign for Kalydeco”, urging NHS & Vertex Pharmaceuticals to agree to a cost.  The campaign details will be available soon on the CF Trust’s website.

Copyright © 2012-2013, Ann-Teresa Cusenza and Orphan Druganaut Blog.  All rights reserved.

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