New data show doubling of deadly lung disease IPF

Numbers of people living with deadly lung condition idiopathic pulmonary fibrosis (IPF) are more than double those previously thought, according to new data from the British Lung Foundation (BLF).

The findings were released yesterday from the BLF's three-year Respiratory Health of the Nation project – the most comprehensive study of lung disease in the past decade.

A little-known, but fatal, respiratory disease – characterised by permanent scarring of the lungs that makes it increasingly difficult to breathe – IPF has no known cause, is often misdiagnosed and average life expectancy following diagnosis is just three years.

Now these new figures show that approximately 32,500 people in the UK are living with a diagnosis of IPF – far more than the 10,000-15,000 identified in earlier figures from organisations such as NICE.

With 6,000 new cases being diagnosed every year, BLF chief operating officer Steven Wibberley pointed out the huge impact that IPF has, in terms of the NHS and service provision, resulting in nearly 9,000 admissions and 86,000 hospital bed days per year.

In fact, one in every 100 deaths in the UK is now caused by IPF, more than many better-known conditions, such as leukaemia, stomach, liver and skin cancers. But, with leukaemia research receiving more than 50 times the funding for IPF – over £30 million compared to barely £600,000 in IPF research – Wibberley said the huge gap needed to be filled, speaking at a Royal Society of Medicine conference.

Although clearly IPF doesn't have the same profile or awareness as these diseases, the BLF believes that 'for a condition with no known cause or cure and such poor survival rates, this urgently needs to change'. Central to this is access to improved care and support for patients – to ensure they are referred earlier to specialist services diagnosis and given access to specialist nurses who can help them navigate the NHS and manage their disease.

"This is the kind of attention IPF patients would receive if their disease were a cancer," Dr Toby Maher, consultant respiratory physician at the Royal Brompton Hospital, told the meeting. "There is no reason why, given the symptoms and reduced life expectancy associated with IPF, they should continue to endure a lesser standard of access to care."

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For further information, read Inspiration, a report bringing together patients, patient groups and globally-renowned clinicians and dedicated to raising awareness of IPF and the need for early and accurate diagnosis, which was published recently by pharmaphorum media and Boehringer Ingelheim.