ORKAMBI

[Hacienda]

Watched "Lucy" on BBC 1 News this Morning. She like Thousand other Young People who have CF, are being Denied this Amazing Medication as The Cost is aprox., £100.000 per person. It has been proven to have amazing results for CF. I did sign a Petition for this Med to be introduced here, ( The petition came from Ireland) that was about 2 years ago. The American Pharmacutical Company have passed all Trials on this Drug. It is the Cost that is denying our Young People a Better quality of Life. There will be a few of you on Here with Youngsters in your families, You probably already Know of This. Just thought I would mention it for you. Best of Luck to you all. Let's Hope UK/Government get it Sorted ASAP.

[Hidden]

Can we get the petition on here? As far as I understand it this drug targets one of the genetic componants that some cfs have. Denying it them whilst spending on other things ( won’t say what for fear of bringing brick bats down on my head) is a disgrace.

[Hacienda in reply to Hidden]

Hi Hun, I don't have the Link, But if you Type in your Browser " Orkambi"

That should take you to the correct site. Hugs XXX

[Hacienda in reply to Hidden]

I Feel for you Hun, I did read The comments. Stay Strong and carry on. Hugs xxxx

[Hidden in reply to Hacienda]

Thanks. I hope that you are having a good day today.x

[Hidden in reply to Hacienda]

Actually thinking of leaving the site today. I give so much of myself and sometimes I wonder why.

[Hidden in reply to Hidden]

For the same reason I have posted hundreds of my rhymes/poems whatever you want to call them. In my case just to entertain the members like yourself who dispense all the knowledge and advice to new members. You leave and I'm wasting my time here because new members come here for help not to read me waffling on. If you go I will be reconsidering my position as politicians say.

[Hidden in reply to Hidden]

Oh Don, you keep us all going and ‘grounded’ as well as giggling.

[Caspiana in reply to Hidden]

Oh no you don't Hidden . 😏 You are very much needed. *HUG* 🌼

[sassy59]

Hello Carolina, I also saw Lucy this morning and can’t believe the drug companies can’t do better with costings. Such a good drug that could help so many.

Let’s hope some good comes from highlighting this and soon.

Enjoy your day. Xxx 😘😘😘

[Hacienda in reply to sassy59]

Yes Carole, it was Discovered 4 years ago and now too expensive for our Government to take on, I hope I'm proved wrong as there are to be Discussions Tomorrow re This Amazing Drug. Love to you Both. xxxxx

[sassy59 in reply to Hacienda]

Love to you too 💕💖

[peege]

Thanks Hacienda, it's a travesty. My daughters lovely friend has CF. a beautiful young woman. She now cannot have her transplant because her other organs are too ravaged from serious infections. So sad. X

[sassy59 in reply to peege]

That’s very sad peege. Xxx

[peege in reply to sassy59]

Yes, she'd have been a lovely mum. She ended her long term relationship because she new she wouldn't be able to have a family. I'll be looking for the petition.

[sassy59 in reply to peege]

Me too xxxx

[sassy59 in reply to peege]

Just checked and the petition is closed. Xx

[Hacienda in reply to peege]

Very very Sad peege. When you think of all the young people dying on our streets. Because of ignorance. And sick Children can't receive this amazing treatment. The mind Boggles. Hugs. Xxx

[cofdrop-UK]

Lucy was amazing this morning. I hope everyone who attends the meeting will have watched her. You couldn’t fail to be moved by this articuate young woman and the piece demonstrated to some extent how difficult it is to live with this condition, along with all the mediations and treatments.

It seems unbelievable that in the 21st century people with cf are deteriorating when there is a proven safe effective drug which would benefit them.

I missed this petition - is it still available to sign do you know?

Let’s hope there is a good outcome following the meetings.

Cx

[Hacienda]

Don't you Dare Leave. You are a big influence to us and your information on Bronc, is so valuable, it's Lungs and we are all together Hun. Love n Hugs. Xxx

[cofdrop-UK]

Found it but sadly the deadline was May.

petition.parliament.uk/peti...

Cx

[Hacienda in reply to cofdrop-UK]

Yes, it was 2 years ago I signed it, didn't know the closing Date. Xxx

[Ergendl]

I would love to see the drug company's costing to justify the price it has set. I understand that research costs are included and need to be recouped but am a little suspicious that it has such a rounded price tag.