NICE approves inhaled mannitol for cystic fibrosis
Cystic Fibrosis (CF) is one of the UK's most common life-threatening diseases in children and young adults. It is a burdensome, harsh and disruptive condition and many sufferers still die in their 20s. It is caused by a faulty gene which makes the internal organs, especially the lungs, become clogged with thick, sticky mucus, resulting in infection and inflammation and making it hard to breathe. Inhaled Mannitol (brand name Bronchitol) is the first and ONLY inhaled therapy which, instead of just relieving symptoms, actually helps CF sufferers rid their lungs of this horrible, destructive mucus.
Two large, worldwide clinical trials have shown that Mannitol significantly improves lung function, reduces the number of chest bugs, and therefore helps prevent the lung damage which is so life-threatening. The quality of life of CF patients in the UK could be greatly enhanced if Mannitol were made available on the NHS. It is quick, portable and convenient, enabling sufferers to fit it into their school, uni and work lives. CF sufferers already have to endure chest physiotherapy 2 or 3 times a day, plus other drug regimes, and are frequently ill and hospitalised with chest infections, disrupting their education and development. Mannitol can help prevent this, and improve the lives of these young people, yet NICE has issued preliminary guidance which recommends that it should NOT be available on the NHS.
NICE’s argument is largely based on cost, yet a year’s supply of Mannitol is a paltry £6,000, surely less than the cost of even one 2 week stay in hospital for intravenous antibiotics (and CF sufferers often need hospital admission 5 or 6 times per year). Patients will need fewer antibiotics, and fewer admissions to hospital, to the benefit of themselves and reduced cost to the NHS.
This therapy, with its potential to both reduce the suffering of CF patients and prolong their lives, should be strongly recommended. NICE has announced a consultation period until 3 July, during which anyone can submit their views and urge NICE to approve this exciting new therapy. NICE’s final decision will then be announced in August. So we have only a few weeks to change their minds.