3 days popular7 days popular1 month popular3 months popular

New figures reveal twice as many people in the UK are living with incurable lung disease idiopathic pulmonary fibrosis (IPF)

New figures released today by the British Lung Foundation (BLF) show that approximately 32,500 people are living with the lung condition idiopathic pulmonary fibrosis (IPF) in the UK. This is over twice as many as the 10,000 to 15,000 previously thought. The BLF have called for increased prioritisation of IPF care in light of the data.

In people with IPF scar tissue builds up in the lungs, making them thick and hard and increasingly unable to take in oxygen. There is no known cause or cure and average life expectancy following diagnosis is three years. Common symptoms include persistent coughing, wheezing and breathlessness. If IPF was a cancer, it would be the eighth most common in the world.

The new data – the first to be released from the BLF’s ‘respiratory health of the nation’ project – will be revealed by our Chief Executive Dr Penny Woods at a Royal Society of Medicine conference on Tuesday, 26 April.

Key findings include:

  • IPF claims 5,300 lives a year, compared to the 5,000 a year previously estimated. This equates to almost one in 100 UK deaths and is more than better-known conditions such as leukaemia, stomach, liver and skin cancer
  • There are around 6,000 new cases diagnosed a year, which is more than the 5,000 a year previously estimated
  • Although the gender split varied, between 2008 and 2012, death from IPF was around 60% more common in men than women (around 14,000 male deaths against around 8,500 female deaths over the period)

Dr Penny Woods, Chief Executive of the British Lung Foundation, said:

“We don’t know whether these figures show that IPF rates are rising or whether this is just a more accurate picture than we’ve had previously. What we do know is that they show more clearly than ever before that tackling IPF needs to be made a priority in this country.

“IPF kills more people a year than conditions such as leukaemia. Yet while over £30m is invested in leukaemia research a year, barely £600,000 is invested in IPF research. For a condition with no known cause or cure and such poor survival rates, this urgently needs to change”.

Dr Toby Maher, Consultant Respiratory Physician at the Royal Brompton Hospital:

“These data confirm what many of us who treat IPF have long suspected: that IPF is far more common than official figures from organisations like NICE suggested.

“This adds more weight than ever to our calls for IPF care in this country to be improved. We need NICE Guidelines to be followed in full, for all patients to be given access to a specialist nurse to help them manage their disease, and for better signposted pathways of care with rapid access to specialist centres to ensure accurate, early diagnosis and treatment for all patients with this life threatening condition.

“This is the kind of attention IPF patients would receive if their disease were a cancer. 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”.

A full overview of the new data is available on the BLF website.

K.M. Antoniou, E.K. Symvoulakis, G.A. Margaritopoulos, C.Lionis, A.U. Wells, “Early diagnosis of IPF: time for a primary-care case-?nding initiative?,” The Lancet, DOI: 10.1016/S2213-2600(13)70283-2vol. 2, pp. e1 (Correspondence), January 2014