Petitioner: Marion Ferguson on behalf of Ivacaftor Patient Interest Group
Status:
Closed
Date Lodged:
03 December 2012
Calling on the Scottish Parliament to urge the Scottish Government to make additional funding available for the immediate prescription of Ivacaftor (Kalydeco) whilst awaiting SMC approval in order that patients do not suffer as a result of administrative delays.
Summary:
22 January 2013: The Committee agreed to close the petition under Rule 15.7 on the grounds that that the Scottish Government has announced a new fund to cover the cost of medicines for individual patients with rare conditions which are not available for routine prescription and further announced that it would take action to ensure there is no barrier to clinicians prescribing Ivacaftor. In closing the petition, the Committee also agreed to bring it and the petitioner's most recent submission to the attention of the Health and Sport Committee. Link to Official Report 22 January 2013 (393KB pdf)
Written Submissions:
We in Scotland, with Cystic Fibrosis, G551D are so grateful for this groundbreaking drug, the first of its kind for CF. It has been developed for our specific gene type.
It is routinely available for those in the USA and is having amazing almost miraculous results.
Unless there is additional and immediate funds made available, this wonderful drug will not be available to all the young people who need it in Scotland for some time.
Every week that goes by whilst patients with Cystic fibrosis G551D wait, they suffer irreversible lung and other organ damage. Some lose the battle to breathe. This is cruel.
However, whilst the powers that be have to measure this drug on it's COST - If they had to measure it on it's BENEFITS it would be Priceless.
This is a medicine that treats the Celtic Gene fault in Cystic Fibrosis. Why should those with this gene in Scotland be one of the last in Europe to benefit from it?