[News] Cystic fibrosis drugs, some VERY good news

[Pevenseagull]

a cause very close to my heart, i.e. my lungs.

I know that a fair number of NSCers signed the petitions I shared on here a while back, it got the numbers, it got debated, negotiations were made and BINGO


https://www.bbc.co.uk/news/health-50144742


this is going to make a phenomenal difference to people growing up with CF, adding quality years to the lives of the poor sods with this absolute **** of a disease.

cheers folks

 

[Pevenseagull]

I'm a bid of an odd one so this medication isn't for me, but I see the state of the poor sods with this ******* disease and have spent quite a lot of time with the parents of kids with CF. As of today there are a few thousand mums and dads who are looking at their kid thinking they're not going to have to watch them die drowning in their own phlegm, Which is nice.

 

[Thunder Bolt]

When I was a teenager growing up in the 60s, I lost a mate, who lived in Shoreham, aged 15, to this dreadful disease.

I really hope this works for those who have it.

 

[Klaas]

Great news.

 

[portlock seagull]

It’s heartening to read an actual medical story where available immediately. And on mass. Normally it’s news about a possible breakthrough which means ten years at least and that’s if the trials go smoothly which they never do. Great news and I’m really pleased to hear it’s going to make such a big difference.

 

[blue-shifted]

Excellent that this is now available.

The previous position that the drug companies would charge £100k per patient put the NHS and the taxpayer in an impossible position. To me this raises questions of how we get the drugs we need to treat these conditions.

 

[Lyndhurst 14]

My niece had this horrible disease and sadly died of it a few years ago. I remember that her life was extended many years beyond the original expected time as new discoveries were made and she eventually had a double lung transplant. She still managed to achieve her dreams which were to get married and become a doctor. She left her body for medical research into CF. I still remember seeing my sister and brother in law pummeling her chest to clear the mucous. They would be so happy that this new drug has been available for others.

 

[Fred Oliver - Legend]

As a father of two young cf children today feels like all Christmas have come at once, very emotional and we haven’t stopped crying with joy. Thanks to all who sign petitions and helped spread the word. You have just saved my children’s lives.

 

[crookie]

A friend of mine mid 20's with CF died a few months ago. This was something he was desperate to have. Sadly too late for him, but I'm glad that it will provide a much better quality of life for thousands of people going forward. A horrible conundrum for the NHS in situations like this when a drug is so expensive. Although you can't put a price on a life, there isn't an unlimited budget. Fair play to the manufacturer and the NHS for reaching an agreement that allows this to be available to those in need at a more reasonable cost

 

[S'hampton Seagull]

As a father of two young cf children today feels like all Christmas have come at once, very emotional and we haven’t stopped crying with joy. Thanks to all who sign petitions and helped spread the word. You have just saved my children’s lives.

Like this post [emoji3060]

Sent from my SM-G950F using Tapatalk