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PE01462: New Treatment For Cystic Fibrosis


Petitioner: Marion Ferguson on behalf of Ivacaftor Patient Interest Group


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.


Petition History:


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? 

My grandaughter has been on this medication foe 5 months and she has gained 15 lbs. and grown 2 inches. Five months ago she could barely walk up the stairs at her home and Saturday she ran a 5Krace in 42 minutes. This medication is truly a miracle drug and everyone with CF should be allowed to have this medication. It has saved her life and I pray all children can get it.

frances ross

23:09 on 03 Dec 2012

happy to help

lee hendrie

20:45 on 03 Dec 2012

Please sign

Margaret Connick

20:02 on 03 Dec 2012

I knew a brave girl who died of this disease

Melina Maclean

16:26 on 03 Dec 2012

No families of people with life threatening diseases should have to battle like we do to improve the lives of our loved ones

Olive Hughes

14:40 on 03 Dec 2012

it is important that these patients get the new treatment

william erskine

11:35 on 03 Dec 2012

i think it is important that any person with CF should be able to get the treastment as it is no fault of their own that they have this condition. drug addicts get veerything

sheona erskine

11:32 on 03 Dec 2012

Please ensure this is available NOW for all who can benefit

Morag Grant

10:09 on 03 Dec 2012

This is so important for anyone with CF , where you live shouldn't come into it....please please make this available to ALL that will benefit xXx

Marina McCuaig

20:30 on 02 Dec 2012

Kalydeco works, it is easy to make and it will transform lives. Each day that passes means more jeopardy for many very poorly children. There is no excuse for delay.

Oli Rayner

16:40 on 02 Dec 2012

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