Orkambi - suitability for Non-CF Bronchiectasis?

[Claudine]

I hear today that Orkambi has been given the go-ahead to be used on the NHS at a more reasonable cost than originally. Is there a chance that this drug could help those with Non-CF Bronchiectasis? That would be interesting to know.

[2greys]

Sorry but it only works for CF which has the lumacaftor and ivacaftor.

Here from the Orkambi website:

orkambi.com/how-orkambi-works

[Hidden]

Sorry Claudine, I agree with 2greys. Unfortunately not all cf patients are suitable because they have to have a particular gene.

[Claudine in reply to Hidden]

Thank you both for your replies. Just as well to know the situation before I start to get excited! I should have known it was too good to be true for us.

[Hidden in reply to Claudine]

Yes, the orphans as always.

[Hidden]

I wondered that Claudine. But I've known CF patients who didn't have Bronchiectasis. By I'm sure it would prevent CF patients from developing Bronch. I'm sure someone will know.

[Claudine in reply to Hidden]

It's very technical judging from 2greys' reply. We do have some similar symptoms to CF patients but obviously the cause and solution is not the same. I remember a GP commenting once that Bronchiectasis is rather an anti-social condition. I feel that very much and also this time of the year we are forced to be rather isolated.

[Hidden in reply to Claudine]

If I had taken that nonsence fron a GP I would have had no life! I have lived a very full life since I was diagnosed at the age of 3. I am 69 now and I would be furious to be described as anti social. It’s all a matter of proper management. Medical and personal.

[Tiger1012]

HiClaudine

This time year I feel really isolated! The weather really effects my lungs so much!! Mine get really tight. Also have trouble exhaling! Even thou I exercise doesn’t matter!! So darn frustrating!

Kristy

[lKeith]

Claudine

I would be very interested to hear whether it can be useful for other uses and a wider audience now if the drug can be extended for others through the NHS prescription service

to treat other diseases/ailments?

IKeith