Parliament Workbench

Petition · PE01462 · Session 4

New Treatment For Cystic Fibrosis

Closed Submitted 2 Oct 2012 Health
Signatures
11,163
5,232 online signatures with a country
Comments
418
Considered
1 meeting
in the Official Report

What it asks

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.

What the petitioner did first

I have written to and emailed numerous MSPs including The First Minister & The Health Secretary. I have spoken at length with the Cystic Fibrosis Clinicians. I have written to the Health Boards for clarification of the process. None of the above are able to give any assistance due to the existing procedures. Most of the above have come back to say that there is a 'robust' process in place.
As a patient group we have prepared a submission which we are going to submit to the Scottish Medicines Consortium, early November.
As a patient group, whilst the Scottish Petition website was under construction work, we did a UK Government petition, to raise awareness, which gathered over 11,000 names in just 3 months. (Finishing September 2012) http://epetitions.direct.gov.uk/petitions/34753. At this point we were unaware that we could still have lodged a petition with the Scottish Parliament and that only one signature is required.
We have met with and have the full support of the The Cystic Fibrosis Trust. We are currently working with The Trust to share their English Kalydeco campaign on all our social media platforms. The Cystic Fibrosis Trust is very concerned about the situation in Scotland with Ivacaftor / Kalydeco and believe that Scotland will be left behind the rest of the UK.

Where it was considered

Official Report
  1. 22 Jan 2013
    Public Petitions Committee
    New Petitions
    2 mentions

Signatures by country

5,232 online signatures
  1. Scotland3,195 61.1%
  2. Ireland622 11.9%
  3. United Kingdom519 9.9%
  4. England452 8.6%
  5. United States160 3.1%
  6. Northern Ireland102 1.9%
  7. Australia33 0.6%
  8. Wales21 0.4%
  9. Spain21 0.4%
  10. Canada12 0.2%
  11. 37 other countries95 1.8%

Comments

418 comments, oldest first
418 comments · showing 1–50
  1. Marion Ferguson 12 Nov 2012
    It's urgent now, that this petition for such a worthy cause, is signed and shared as soon as possible.
  2. Natalie Fee 12 Nov 2012
    This drug is a must! Why should people be left to suffer when there is a known medication available with MASSIVE benefits. How can you put a cost on someones life? Lets get this ASAP!!
  3. Teresa Super 12 Nov 2012
    The CF G551D community have tracked the the development of this drug for years. It is innovative, there is no alternative to it, they need access NOW
    - it is litterally life saving!
  4. Susan Hart 12 Nov 2012
    Instead of spending millions on drug addicts why not spend on the kids that want to live life to the full. These kids were born with CF they did not ask for it and spend too much of their lives taking med or in hospital when 2 blue pills would get rid and let them lead the lives they deserve.
  5. Teresa Fuller 12 Nov 2012
    Kalydeco is the first drug of its kind to treat the underlying cause of Cystic Fibrosis. It is truly a life saving drug for those with the G551D mutation. To deny this medication to those who could directly benefit is medical cruelty. For decades, patients with CF and their loved ones have waited and hoped for a groundbreaking medication like Kalydeco. Now it is finally here. Please show compassion and save lives by making it immediately available to all who can benefit.
  6. lorna white 12 Nov 2012
    it's terrible that people have to rely on donations for drugs like this, when the government is spending millions of pounds on Methadon users, and 90% of them have no intention of getting clean.
    our governments is needing to get their act together.
    the rules change when any of their childern become ill, and need some kind of special drug that is not available in this country,
    its time we started looking after our own sick people instead of sending all this money to other countries.
  7. Tony Caunce 12 Nov 2012
    This has dragged on too long stop haggling and provide this essential drug NOW
  8. Donna Vaughan 12 Nov 2012
    I have a 26 year old daughter with this gene. I have waited for this miracle for so long. These children were born with this. It is not self inflicted and yet the goverment. Still spend millions on drug addicts without any hesitation. It makes my blood boil. Our children need this lifeline. Please find it in your heart to fulfill our dreams. Would the decision be easier if it were your child?
  9. Angela McGowan 12 Nov 2012
    This new drug has helped my niece so much please make it available to everyone else please. Thank you
  10. hayley 12 Nov 2012
    i had a sister with this gene and sadly she past away 5yrs ago on her 18th birthday so in allways happy to help cf..just wish they would find a cure x
  11. Claire Whelan 12 Nov 2012
    Please start this now & save lives PLEASE, Save lives not money
  12. Sarah North 12 Nov 2012
    This will transform young peoples lives, enabling them to stay out of hospital, to have careers and live normally
  13. Laura Brown 12 Nov 2012
    My friends daughter has it and by god it would be amazing gor her to receive this drug. Her and her family suffer enough like you all do. God willing . All c.f. sufferers will be granted a life xxxxxx
  14. Bryan slaven 12 Nov 2012
    cut back on the funding given to drug addicts,and fund the cystic fibrosis treatment so badly needed.
  15. Kylie Ryan 12 Nov 2012
    Find a cure quickly and save those little lives!
  16. Lorraine Smith 12 Nov 2012
    It is your moral duty to make this drug available NOW! CF sufferers need to be put before people addicted to alcohol, drugs or food!
  17. Gareth Barwise 12 Nov 2012
    This will transform young peoples lives, lets do this!!
  18. Robert Aitken 12 Nov 2012
    As parent of two daughters with the gene, one of whom was on the drug trial preceding approval, I know what a huge difference it can make. A National Health Service which does not approve this is not worthy of the name.
  19. Julie Gordon 12 Nov 2012
    Please give our daughter Kate the future she deserves and all her fellow CF sufferers
  20. Peter Chisholm 12 Nov 2012
    The delay in making this drug available is cruel beyond comprehension. Make this available NOW!
  21. Katrina Howieson 12 Nov 2012
    This drug will add years to my young daughter's life and those of all CF G551D patients... but they must get it so very soon!
  22. Rebecca Schroeder 12 Nov 2012
    My son has been taking Kalydeco since Feb, 10 2011 and it has been nothing short of a life-changing miracle! Considering the degenerative nature of cystic fibrosis, it is extremely important to get this drug to patient's NOW! After seeing the impact of the drug first hand, I can honestly say that denying access to those with who need it should be considered torture and medically unacceptable.
  23. david merrigan 12 Nov 2012
    this drug will add years to my nephews life, make this available NOW!!!!!!
  24. Mathieu Carey 12 Nov 2012
    Please give CF sufferers a chance to live long and fruitful lives!
  25. frances clark ross 12 Nov 2012
    Please help save lives of children who are dying because they cannot get this medication. My grandaughter who lives in US, it saved her life by finally gettting on this medicine. Please don't you want to lie down at night and think about the lives of children, not dying but the ones of those lives that were saved because of YOU..
  26. Fiona Duthie 12 Nov 2012
    Please give CF sufferers a chance to live long and fruitful lives!
  27. Tilda Black 12 Nov 2012
    This drug will give my daughter a future. Please, please make Kalydeco available now!!!
  28. Emma whelan 12 Nov 2012
    my nephew has been through so much already and needs this for a longer life please get it out ASAP
  29. Gavin McLean 12 Nov 2012
    Please make Kalydeco available
  30. Eileen McLean 12 Nov 2012
    Please help all the CF sufferers in Scotland
  31. Maria McGivern 12 Nov 2012
    It's awful that it is being delayed it should be made more available. Please!
  32. Vicki Salvage 12 Nov 2012
    This drug should be made available to everyone with CF. I hope this petition helps to achieve this goal. . . .
  33. diane mcmillan 12 Nov 2012
    Kalydeco should be made available in Scotland, for all the people who would benefit from it!!
  34. John McLean 12 Nov 2012
    As you all sit round the table imagine your child has CF.
  35. William Vogelsang 12 Nov 2012
    Signing for a friend whose daughter suffers from this.
  36. Cindy Baldwin 12 Nov 2012
    Please make kalydeco available!
  37. dawn laverty 12 Nov 2012
    Surely anything to relieve the suffering of these unfortunate people must be made available now.
  38. Suzanne divers 12 Nov 2012
    Please get this cure for our babies!
  39. Karen-Ann Robertson 12 Nov 2012
    please help CF sufferes of Scotland,
  40. Kathryn walker 12 Nov 2012
    Please make funding available to help CF patients in Scotland.
  41. Paul Rudd 12 Nov 2012
    Please make this available NOW.
  42. Davina A Griffin 12 Nov 2012
    The change this drug would make to those with the G551D gene is awesome. PLEASE make this available in Scotland as soon as possible. If the drug is considered too expensive deduct medications, long, frequent stays in hospital, care of many professionals, equipment and other treatments which will be deductable from cost.
  43. June Barclay 12 Nov 2012
    Please ensure that Kalydeco is offered as treatment to those with CF in Scotland.
  44. Maureen 12 Nov 2012
    My great niece and nephew have CF...please give them all the help they can get to have a good quality of life
  45. E Gallagher 12 Nov 2012
    This drug would be beneficial for not only me but for my family member who also has C.F...
  46. Lorraine Hunter 12 Nov 2012
    Please help all the CF sufferers in Scotland
  47. Julie Askins 12 Nov 2012
    This drug must be made available for all G115D suffers to give them a Brighter, Happier and Healthier Life, They have the right to Breathe.
  48. Michelle Purdie 12 Nov 2012
    If any of you have a heart please make this treatment available. Thank you
  49. Andy Askins 12 Nov 2012
    Everyone that needs this should be getting it without having to fight!!!!
  50. gina burke 12 Nov 2012
    good luck with the petition,,lets hope it does some good,,,best wishes to all who suffer from this disease