Access to lifesaving drugs for children with Cystic Fibrosis

[aveline161]

https://petition.parliament.uk/petitions/650674?fbclid=IwAR2OSKwgzAptAOeJvx8wwL3WWK-MZZViLIs1UWvL96mfab6nMCA9SewWx78_aem_Ad1IKrzVqtk6AtvsACLVscND619tAp5bpIqwDCwShMpl17ZJ0ueBfBA-HknimoQ8LvU

please comment to help bump the thread- here is some heartbreaking context:

https://www.bbc.co.uk/news/uk-wales-67371751

I doubt this will actually happen. It's probably just to put pressure on the manufacturers to reduce the price of the drug to the NHS.

At least I truly hope so.

Signed. CF is a horrific disease and these newer drugs are transformative.

@DianaTiana
i agree this is what happened last time
NICE regularly reviewed the cost effectiveness of all drugs l.

Signed. These new drugs are indeed a life changer and it would be disastrous for anyone with cf to lose access to this treatment

Signed

Just for clarity, my understanding is they won’t take anyone who’s already on it off, but they won’t start anyone new on it, so anyone with babies and children has been told there is a cure then had that hope snatched away

Signed. My friend in the states' daughter takes Trikafta, it's been a life saver. Sick that UK people with CF might not have access.

The drug has saved my son's life. I am grateful every single day.

We have to keep fighting this. Please everyone sign and spread the petition with everyone you know and ask them to do the same xxx

Signed. DH lost a family member to CF about 20 years ago. I have a friend in her 20s with it and on one of these drugs and it is incredible, she lives a normal, full life with just the occasional chest infection. Day to day you'd never know she had it.

I was about to share this myself but spotted this thread so giving it a little bump instead.

Please keep signing and sharing.

Bump. Glad to see it being shared on fb.

Signed and bump

Signed and shared.
Bump

Signed. These drugs have been an absolute game changer for my two sons. They have gone from being on IVs every three months, daily oral antibiotics and multiple nebulisers to a vastly reduced medication burden. I actually dare to believe that they can have a normal life expectancy now.
It’s horrifying to think others won’t get the same chance and I hope an agreement is reached.
I will contact my MP but he’s a Boris-loving waste of space who has shown zero interest in any other CF issues I have contacted him about.