SO Much FOR New UK 🇬🇧 USA Trade Aggremets POST Brexit Re Lung Health ..... Yup We Are Someway Down List WHEN Comes To New Drugs

Yup am talking about trikafta ... that patient’s with cf are enjoying success with when it comes to lung health.

Sure it’s for cf but this lot of drugs lung disease suffers take born from them used for cf

Anyway new drugs watch dog minaster AS said they are to busy to look into making avable over here till 2021.

youtu.be/DPK7WZzkLWA(Not working as expected?)

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.

dailymail.co.uk/health/arti...

[skischool]

cysticfibrosis.org.uk/the-w...

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 ?

[Hidden in reply to skischool]

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

[skischool in reply to Hidden]

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

[Hidden in reply to skischool]

Why would I need to read something from other site AM not intrested in anything EU or NICE have to say or don’t

Some of us have lived long enough with with what they have said and not said or done.

Point being it should be prescribed over here 👈

[skischool in reply to Hidden]

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.

[Hidden in reply to skischool]

Well we can read stuff till blue in face BUT we need action.

Only way to raise issue is to ask our doctors AND am going to doing that.

My lung doctor is one of the six NOT like you would think to talk to him

[Cateran in reply to skischool]

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.

[Hidden]

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.

[Hidden in reply to Hidden]

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.

Here is interesting read on cf and none cf

bronchiectasisnewstoday.com...

[Hidden in reply to Hidden]

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.

[cofdrop-UK]

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.

C

[cofdrop-UK]

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.

Cx