Boehringer launches IPF initiatives
pharmafile | February 29, 2016 | News story | Medical Communications, Research and Development, Sales and Marketing | Boehringer Ingelheim, Esbriet, Roche, idiopathic pulmonary fibrosis, ofev
Boehringer Ingelheim has launched a collaborative initiative aimed at raising awareness and understanding of the rare lung disease Idiopathic Pulmonary Fibrosis (IPF).
Working with pharmaphorum media, the company brought together patients, patient groups and globally renowned clinicians to launch a report into IPF called Inspiration – the results of which have been launched on Rare Disease Day 2016. Boehringer has also launched the Inspiration magazine, which aims to give patients a voice and put the debilitating condition in the spotlight.
In the UK, more than 15,000 people have IPF, a fatal condition characterised by permanent scarring of the lungs and gradual loss of lung function. The condition is gradually diagnosed an average of one to two years after the onset of symptoms, and the majority of patients will not live more than three years from diagnosis.
“I am impressed by the efficacy and easy reading of the whole report. It really catches the attention on the important points and is something that so far has not been available to the community,” comments Professor Luca Richeldi, University of Southampton. “With the number of people being diagnosed with IPF in the UK steadily increasing year on year, government and policymakers need to prioritise this condition as though it were a cancer. This report will go a long way towards achieving this aim.”
Results of an international survey of more than 500 people living with IPF in more than 20 countries worldwide reveal the real-life emotions faced by those with the disease. When asked ‘what do you think of when you think of IPF?’, breathlessness – one of the most common symptoms of IPF – was the most frequent response, at 33%. As the condition causes the lung tissue to become thickened, stiff and scarred over time, this shortness of breath makes it difficult for people affected by IPF to carry out every day that healthy people take for granted.
The research also reveals that the progressive and unpredictable nature of this fatal lung disease places an emotional burden on those affected by the condition; almost a quarter (23%) of respondents said they fear not being able to do the things they used to do before having IPF and one in three people said they feel “frustrated” by the condition (29%).
Dr Toby Maher, consultant respiratory physician at the Royal Brompton Hospital in London, UK, says: “This thought-provoking research echoes what my patients talk to me about when we discuss life with IPF. Thankfully our understanding of the treatment of IPF has moved forward a lot in the last few years. As physicians we can help address the negative emotions many patients experience at diagnosis and improve how they see their future with the disease so they feel positive about starting effective treatment.”
The survey also reveals the importance of patient advocacy groups in helping people live with the condition; 42% of respondents said these groups made them feel less isolated and provide access to important information.
Mike Bray, chairman of the charity Action for Pulmonary Fibrosis (APF), adds: “Living with IPF can be distressing and too few people appreciate just how isolating living with a rare disease like IPF can be. This research and the launch of the collaborative magazine Inspiration are important ways for those of us who are affected to be heard, so that understanding and support for the IPF patient community continues to improve.”
Progress in treating IPF has been made in recent months. Last September, at the European Respiratory Society (ERS) congress in Amsterdam, Roche revealed positive data from trials of its drug Esbriet (pirfenidone), and more recently, Boehringer itself last week said pooled analysis data of Ofev (nintedanib) showed it to be effective at slowing progression of the disease.
Joel Levy
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