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New IPF research offers hope for the future

Lucinda Roberts is encouraged by the latest research developments.

Lucinda Roberts thumbThis year, 5,000 people will be diagnosed with idiopathic pulmonary fibrosis (IPF) in the UK. Just half of those will live for more than three years after their diagnosis.

Despite being one of the most common interstitial lung diseases, there is a real lack of treatment options available at the moment.

Twenty years ago HIV was a death sentence. Now it’s a manageable long-term condition. That’s what we’re fighting towards for IPF – and it’s why I headed off to one of the world’s most important respiratory health conferences last week.

Doctors, researchers and pharmaceutical companies from across the globe gathered in San Diego for this year’s American Thoracic Society conference to share ideas and present the very latest research. I came away really excited about the progress we’re making.

Two pharmaceutical companies presented some incredibly encouraging trial results – a major breakthrough in treatment options for people with IPF. One of these showed how a drug called nintedanib can slow the progression of the disease by about 50 per cent. Hopefully we’ll see this making a difference for people living with IPF in the UK very soon – there are a few hurdles to cross first, but these are incredibly encouraging signs.

The second drug I was shown is called pirfenidone. This was also shown to significantly slow the rate of lung function decline – and the good news is it’s already available in the UK.

As well as this glimpse into exciting new research, there were a number of discussion sessions about IPF at the conference. I heard about the devastating impact IPF has on people’s lives, and from doctors and researchers who are dedicating their lives to fighting it.

Steven Wibberley ATS Conference 2014Steven Wibberley from the BLF spoke about the effects of IPF in the UK, and the work we’re doing to make a difference for anyone affected. It was incredibly promising to see so much action about IPF at the conference. As one doctor told me, ‘this is a historic day for IPF’.

We’re not there yet – there’s a long way to go, but all the right developments are taking place. That’s why we are fighting for more research into the condition and working for a future where people living with IPF have lots of effective treatment options and choices.

We’re also campaigning to make sure doctors in the UK are more aware of the condition. We want to make sure people are diagnosed earlier and have access to pulmonary rehabilitation, oxygen treatment and assessment for lung transplant, if appropriate.

You can join the fight against IPF today - make a donation to fund research. Do you have any questions about the new IPF research and how it affects you? Ask a question for next month’s online surgery.


It is certainly encouraging to see more attention devoted to IPF. I was diagnosed six years ago so I suppose I am now on borrowed time. I tried Pirfenidone last year but the side-effects were more than I could stand, and made me worse rather than better so my consultant took me off it. I would be interested to try nintedanib and will be asking my consultant about it today.
I think it is brilliant if these two drugs can slow, things down,the sooner the better for all of us with iPF. can Penifodrome be subsribed by my consultant now? thank you, arthur blackwell
The BLF has helped to establish a support group for IPF/ILD in Newcastle upon Tyne that welcomes anyone affected by this condition. The next group meeting is on Thursday 19 June at 1.30pm. Contact BLF helpline for details - 03000 030 555 or
I think the need is great for us all to be mindful in keeping our air clear and clean and free of carcinogens. Beware for instance of our ready use of barbecues on our otherwise green and open spaces, spoiling the air for those who live near by and inflicting those who cannot speak for themselves by allowing barbecues often adjacent to children's play areas in our public parks.
I raise money, in a modest way by making and selling items, for research into IPF following of the death of my husband Brian Homer from IPF. Absolutely delighted progress is being made.
Is any research being done for NSIP - everything seems to revolve around COPD!
Hi Lynda, The current studies have been carried out in patients with IPF and not those with other ILDs, so at this point we cannot say.
Are any of the new treatments suitable for nsip or other types of ild. Thanks

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4 June 2014