British Lung Foundation
33,729 members41,203 posts

Can you help us please ?

Hi, I am one of 9,000 cystic fibrosis suffers, I have endstage cf and have just attended the Freeman hospital for an assessment for lung transplant. We are trying to get the drug, Kalydeco, available in the uk that has been manufactured by Vertex in America. At the moment the genes that have been tested will only help 360 of the cf population, but they are trialing the next gene. This is one of the most expensive drugs made and the NHS are dragging their feet prescribing it. We need to get the drug into parliament to be discussed and are running a petition, but need more help. There was a link recently that it could help other people with lung disorders, mentioned COPD in the future.

Could I ask you to sign our petition online, it only takes 30 seconds and please pass to any family, friends, workmates, etc who you think could help us. Second link is a little info from one of the mums on our closed facebook group.

If you need anymore info, please contact me on - cfchez @ azhz . co. uk (no spaces in address).


Cheryl - a fellow lung sufferer

8 Replies

Thanks Cheryl, wishig you every success with this.


Petition signed, good luck.



Signed..hope this helps.


:) signed


I don't feel able to sign your petition. Believe me, having been in hospital many times with CF pts I'm completely on your side in the fight for new drugs & treatments, and have campaigned for them myself, but there is absolutely no chance of NICE approving funding for Kalydeco, the cost of which is £100k per person per year. If Kalydeco were prescribed to all 360 people with the G551D gene it would cost, obviously, £36million per year. The NHS simply doesn't have enough resources to spend that kind of money on 360 people, nor will it ever have. It's simply unrealistic.

Bear in mind NICE recently turned down an application to approve inhaled mannitol, which costs a comparably tiny £6k per patient per year and would benefit many more people with CF.

I think it would be much better to start a campaign for Vertex to lower the ridiculously high price of this drug to something which is actually affordable.

FF x


Thank you to those of you who have signed. fairyfootsteps Vertex have been involved in many meeting meetings over here with NICE (who are now not involved with this drug, as they feel that as it does not benefit all cf's yet, the number of patients it will benefit are too low). So this has now been passed to the individual PCT's who Vertex are now dealing with and the CF Trust. They have never once said at any of the meetings how much they are going to be charging to any country outside the USA. In the US, they do offer it free of charge to people on benefits or on min. wage.

It has been reported that Vertex have already covered the cost of bringing the drug to market with the very high costs they have charged the insurance companies in the US, so they are now making profit. And as my doctor said, they know we are going to be on this drug for life, so they need to not be so greedy, because as you point out the NHS will not fund it if they go in too high.

At the moment they are offering it on compassionate grounds to cf with the two genes with lung function of under 40% and those on the transplant list. My doctors are trying to obtain this for me, but we still need to try and get it for the others who will benefit from it. One young lady in our group has been on the drug a month now and 4 days after taking the drug whe walked round a shopping centre for 90mins, without her oxygen & wheelchair. this is her blog.


I know we cf's are a huge drain on the NHS, but people in America on Kalydeco have come off their nebulised drugs, Pulmozyme cost £900 per month, Tobi £1,500 per month and Cayston £1,800 per month and ventolin, plus they are using less or no insulin and their creon usage has gone down. Plus they are no longer having iv drugs, I have home iv's every two months and the drugs I am on are £3,000 per two week course. I don't take up a hospital bed which would be more a drain on the NHS. As I get worse though, I will have to go into hospital, be put on a Pap machine on a night to help me breath, overnight feeding. Different and more expensive iv drugs. I am also on Home oxygen 24/7, I know it is not cheap for my PCT per month, and could find this costing.

Home oxygen therapy is provided

to about 85,000 people in

England, costing approximately

£110 million a year1.

So I guess if Vertex were to bring it down to say £50,000. It wouldn't be too far off things that I would no longer need if I was taking the drug.

Thanks anyway for taking the time to read my post.




Signed - hope this helps.


signed, hope it helps too.



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