What would you do to save your child's life?

[CampaigningMum]

Seriously, I have gone from quiet, mind my own business person to sharing my facebook with neighbours & strangers, protesting outside Parliament, appearing on national TV (This Morning, Sky, BBC, ITN & 5 News) and sucking up to my local MP against all my instincts. I spend every evening writing letters, emails, researching. I'm campaigning for a medicine that will give my son years of extra life. He has Cystic Fibrosis and an incurable lung infection. Here's a Petition for him, if you would please sign & share I'd be so grateful: www.thepetitionsite.com/en-gb/675/307/488/vertex-lower-the-price-of-your-medicines-so-luis-amp-others-with-cystic-fibrosis-can-access-them/ We've campaigned since February but nothing has changed - I am seriously thinking we will have to chain ourselves to Parliament, or something similarly as drastic - what would you do? And can you offer any advice for our campaign...

Sorry to hear this, I have just been reading about Vertex - en.m.wikipedia.org/wiki/Vertex_Pharmaceuticals

I'm wondering if tweeting someone like Elon Musk might get him to buy enough shares he could then influence their pricing strategy as a major shareholder?

Or there is a someone new appointed to negotiate lower prices - www.thetimes.co.uk/article/former-glaxo-boss-andrew-witty-has-the-last-laugh-on-pharma-qpj5pw6f0

It is a disgrace that there is so little control over drug pricing in the US

We're in the UK. The drugs company is from the US.

Signed, I'm sorry you're having to battle over this

I have signed this for you.

@CampaigningMum - I'm not sure 'who' you are but I have been stood with you hollering at the top of my lungs outside parliament so we possibly already 'know' each other! 😀

We're getting there, one party will break soon, they cannot continue to let hundreds of people die over money, we need to keep in the public eye and keep the pressure on NHSE and Vertex.

From one CF mum to another - my boy is later stages and is pretty sick atm in hospital. We will get there.

Much love to you. We have CF in my our family and it's a vile disease. Appalling that the government isn't prioritising this

Thank you so much

Thank you so much

Not sure how to direct messages to each person! But thanks to all that have signed and Hi to the other CF Mum and person with CF in the family. Are you on the facebook campaign group ukneedsorkambi? So sorry to hear your son is so poorly @TitsalinaBumSquash (great User name). Have you got compassionate access to Vertex drugs for him? We just have to win this fight...

I have signed, it's disgusting that vital medication like this is denied on a cost basis.

I don't know tbh about compassionate access to it. Our consultant mentioned the possibly only yesterday because my sons lung function slipped into the 30's (FEV1 predicted)
I'm having a meeting with the whole team
Friday so I will be bringing it up. A lot of the consultants sit on the board of NHSE though so they're often quite tight lipped about it. I was surprised it was mentioned during ward round.
I'm on the FB group, fairly quiet on there though because I don't have an ounce of information compared to some of you but I always attend the protests and debates, my photos were used for a lot of the media coverage from the parliamentary debate protest.