Just seen my consultant today and he said that Mepolizumab was rejected by Nice because of its high cost, now it went into additional consultation and Asthma UK also contributes into that consultation
I've been waiting for this injections for 2 years, as many other people with eosinophilic asthma , and now got a response that it might be not approved!
I've got severe breathlessness , not controlled by steroids, and this was the only
treatment that could help
Just want to know if Asthma UK / BLF arei intending to contribute into that discussion and if they collect any evidence from this forum members
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Polzovatel
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Hi I am sorry to hear this. If you want to contact BLF use the message system. Refresh your page and you will see 'further information,,,,'. Click on that and send a BLF moderator a message about it. They don't routinely read the posts and certainly Asthma Uk don't. You will need to ask them on their site. x
I have A1AD alpha one antitrypsin deficency, I was diagnosed 9 yrs back, my condition requires replacement therapy through IV it's hugely expensive around 2 thousand a wk but we are classed as rare disease so easy to ignore sweep under the carpet etc,etc, I have only the middle sections left of both lungs I have done everything in my power to stabilise my condition our life span is short, I was 45 when it started its passed on by 2 faulty genes from both parents one each it's a devasting condition and incurable! Most Country's in Europe access the therapy I need, including bankrupt Greece! It's a total disgrace that the 5 th richest nation in the world fails us this way, we have been fighting for years for our rights to it here still no further...so I wish you well, USA had this therapy for alpha since 1987 ! Our life span officially is 54 but with the many we can go into our 60 's they offer lung transplantation but that's it, it's abismal my advise is go to Germany or look abroad .
If a therapy is not recommended by Nice (not cost effective) , is there a way to get it privately at least for a few treatments to check if it helps at all?
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Feeling a bit rejected by work.
IMPORTANT: Very high levels of air pollution currently in Southern UK
Lung Volume Reduction Surgery (valves) - One week on.
