I saw Tyniesha's post on this so thought I would update everyone.
Bronchitol has been extensively trialled in the UK and I was on the bronchiectasis trial at the Brompton & am now getting it on compassionate grounds. It's amazing! I haven't had a single chest infection in the 2 yrs I've been on it, and my FEV1 has increased from 66% to 80%.
It has already been licensed for cystic fibrosis (the trials for bronch are due to finish in autumn 2012) but to date NICE has turned it down, on grounds of cost-effectiveness, even though it's not expensive. I've set up a petition to fight this stupid decision and you can sign it here
avaaz.org/en/petition/Persu...
Also it would be very helpful if you could let NICE know your views directly. It only takes about 5 minutes & they DO take notice of patients' views
THE DEADLINE FOR THIS IS 3 JULY SO THERE'S NOT MUCH TIME!!!
Go to guidance.nice.org.uk/TA/Wav...
All you need do is:
(a) go to where it says "click here to identify yourself" & fill in your details - note you must not identify yourself or your medical condition in any way.
(b) tick the Data Protection box
(c) scroll down to section 1 headed "Appraisal committee's preliminary recommendations" and "click here to add your comments". Make sure you don't exceed the 1,200 characters. I suggest you confine your comments to this section (see suggestions below), cos unless you've tried Bronchitol you won't really have anything to say in the other sections, so just put "None" in each of those
(c) then click Submit - you get a chance to edit your comments before finally confirming, and then NICE will send you an acknowledgement email
Back to section 1 - all you need say (use your own words obv) is something like as the therapy has been shown to (a) improve lung function (b) reduce infections (and thereby drug treatment and hospital stays) (c) is inhaled rather than nebulised so is much easier to fit into school, uni & working lives, and (d) is much pleasanter than hypertonic saline, it should be made available to CF patients as an alternative to hypertonic saline. Also it would cut down on antibiotic prescriptions (leading to less resistance) and hospital admissions for IVs, thereby saving NHS money.
These really are the main points but the crucial thing is that you say something and send it in to NICE! This is so important.
Thanks everyone! Any queries or if you want more info, please send me a message
xxx
fingers crossed. maybe a TV interview would help a lot - try Breakfast TV ? or This Morning ?
