Clearly not quite what brosis haled promised BUT why would those who are wealthy have to sweat on it when can fly to these countries and get these latest drugs.
After its all it’s only us who suffer like girl In article who OUR ELECTED LEADERS are apost to represent.
This may enlighten you a little and is far more comprehensive than anything the daily mail produce.
I neither voted for Boris or Brexit but just on this one occasion i think i can not lay the blame,if there is any,on the government as it appears that neither the european or uk government have yet to approve Trikafta let alone negotiate availability and prices with Vertex it's manufacturer ?
Is that not what I said ... also this six doctors round U.K. than can prescribe new drugs
But can’t if know one ask CLEARLY daily mail might not be all BUT got it out there for others to see AS our ministers drugs watch dog are to busy TO worry about nations lung health
As to brexit IT dose not mater who did or did not vote for it BUT as we have seen it’s going to happen SO we need our advocates to fight our corner
No it is not what you said. The two new drugs available are under the nice agreement to be recommended and prescribed dependent on clinical need the new triple therapy drug TRIKAFTA has not yet been trialled and certified fit for purpose yet by the relevant European and UK authorities and are simply not legally approved. Read the article from the Cf community who have far more insight than the daily mail
The article i referred to you healthunlocked.com/api/redi... is from a recognised UK based charity that has far more knowledge on the subject than both you or i.
Well-argued ski. I agree with your observations about TRIKAFTA and also about clinical trials and NICE. I for one did not vote for Brexit as did many in Scotland nor do I read the Daily Mail or other Populist rags.
Hi Jeff, as this drug has now been approved by the FDA it is likely that NICE will now approve it. It is specifically targeted at a specific cf gene mutation and so would be of no benefit in other lung diseases.
As a non cf bronch patient I have long had the galling experience of watching other drugs being developed and even trialling a couple as a control, which worked on me, are then approved but refused as a therapy for non cf on the grounds that there have been no clinical trials for its use in non cf. Of course it is actually cost and the fact that the cf lobby have a huge machine behind them which garners public opinion, funding and government action.
Very frustrating.
in reply to
Hi littlepom most lung disease are born in issues with ctfr gene ITs drug process I for one would not mind trying AS this loads of cf healthy carriers that have been dismissed as ok who go on to develop lung disease.
Myself I have none cf Bronchiectasis and that is linked to cf and ctfr genes ALSO my medication was born used in treatment of cf SO to dismiss something especially when so interlinked is madness
Clearly I won’t be handing back my inhaler that was made for cf treatment OTHERS can if they like all take my chance with something that might than something that won’t especially as it’s all new target therapy.
The meds I have for my non cf bronch are all used for cf. I have been tested for cf genes every time a new one is discovered but I do not have any of them therefore the drugs targeted at the specific cf genes wd not work for me. Have you been tested for the cf genes? It might be useful for you.
Your comments are unkind and selective to a decent man. I didn’t vote for Brexit or Boris, neither did Skis and I for one do give a wink of people’s opinion and their right to express them without fear of harsh comments.
I missed your post RedSox but I have just looked at it. It didn’t seem to me that anyone had ‘muugged’ you for your deeply held and valued views, only that some did not hold those views themselves, but appeared to respect you and your right to your belief, so to pick out one person seemed a little unfair.
Your sincere Christmas wish is appreciated and in turn I woud like to wish you a very Happy Christmas and better health for the coming year.
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