Idiopathic pulmonary fibrosis (IPF) community emphasizes the power of united support for patients during IPF World Week 2013
Patients encouraged to embrace digital advances which allow “networking to a degree that previously might not have been possible”
BRISBANE, Calif., Sept. 20, 2013 /PRNewswire/ — This year’s IPF World Week (September 21-29) sees healthcare professionals, patient advocacy groups, people living with idiopathic pulmonary fibrosis (IPF), who have an estimated median survival time of two to five years,(i )and their families calling for an integrated approach to further strengthen the national and international network of people working to support patients with this fatal orphan lung disease. The fundamental aim is to lessen patients’ isolation and fear by demonstrating that there is a growing community of support.
This year’s campaign theme of the awareness week, which was founded only two years ago in order to address the issue that people with the disease felt overlooked, is ‘Breath of Hope’. In Europe, around one hundred initiatives will take place in IPF centers of excellence, which will involve IPF experts, patients and wider communities. In the United States many initiatives are taking place during IPF World Week, some of which have extended throughout the month of September, driven by two leading patient associations, the Coalition for Pulmonary Fibrosis (CPF) and the Pulmonary Fibrosis Foundation (PFF).
“IPF is a serious and rare illness and by being a rare and poorly understood disease, patients often feel secluded and alone. There is a European network of IPF patient advocacy groups working to support patients and their families. We must bring hope to those who live with IPF and show that their needs are now being better recognized. This year, images representing the ‘Breath of Hope’ campaign were selected by European, American and Canadian IPF associations through an international public photo and video competition. The two winning images represent support across generations, using soap bubbles as the symbol chosen to promote IPF awareness,” said Rosalba Mele, President of Ama Fuoridalbuio, one of the most active patient associations in Europe.
She added, “In today’s social media age we can help patients embrace digital advances and the power of online communities, such as RareConnect(ii) or IPFWorld,(iii )allowing individuals to connect and share experiences; networking to a degree that previously might not have been possible.”
IPF is a progressive, irreversible and ultimately fatal orphan lung disease which causes scarring of the lungs, irreversibly destroying normal lung architecture and hindering a patient’s ability to breathe. It is often characterized in adults above 45 years old by non-productive cough, breathlessness and the sound of crackles when listening to the chest, sounding like Velcro being slowly torn apart.((iv))
Approximately 30,000-35,000 new patients will be diagnosed with IPF in the 27 EU countries each year. The disease typically occurs in adults and is more common in men than women.(v)
“It’s the role of physicians, patient advocacy groups and medical companies to raise awareness of conditions in order to help and provide the tools for individuals with the disease, and their families, to help them cope better. It’s also important for physicians to look for and recognize the signs of IPF much earlier than is current practice, given that the lung damage associated with IPF is irreversible,” said Professor Jim Egan, Director of the National Advanced Lung Disease Program and Director of the National Organ Donation and Transplantation Office, Ireland.
InterMune (NASDAQ: ITMN) is leading the world in research and development for IPF. The company is dedicated to working in close collaboration with top physicians, patients and the broader IPF community so that patients can ultimately look forward to new therapeutic options and better health outcomes. The company proactively supports and endorses IPF World Week through action and support of the community.
European, American and Canadian IPF associations that are participating in IPF World Week will be posting their events on www.ipfworld.org.
About IPF Week
IPF World Week aims to raise awareness of IPF around the world and bring hope to those who live with the condition.
Winning entries of 2013 ‘Breath of Hope’ photo contest:
Idiopathic pulmonary fibrosis (IPF) is an irreversible, unpredictable and ultimately fatal disease characterized by scarring (fibrosis) in the lungs, hindering the ability to process oxygen. IPF inevitably leads to worsening lung function and exercise tolerance, and shortness of breath. Every IPF patient follows a different and unpredictable course and it is not possible to predict if a patient will progress slowly or rapidly, or when the rate of decline may change. Periods of transient clinical stability in IPF, should they occur, inevitably give way to continued disease progression. The median survival time from diagnosis is two to five years,(i) with a five-year survival rate of approximately 20-40 percent,(vi,vii) which makes IPF more rapidly lethal than many cancers, including breast, ovarian and colorectal.(viii,ix) IPF typically occurs in patients over the age of 45, and is more common in men than in women.( )(iii)
InterMune is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and orphan fibrotic diseases. In pulmonology, we are focused on therapies for the treatment of idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease. Pirfenidone, the only medicine approved for IPF anywhere in the world, is marketed by InterMune in the EU and Canada as Esbriet® and is currently in a Phase 3 clinical trial to support regulatory registration in the United States. InterMune’s research programs are focused on the discovery of targeted, small-molecule therapeutics and biomarkers to treat and monitor serious pulmonary and fibrotic diseases. For additional information about InterMune and its R&D pipeline, please visit www.intermune.com.
(i )Meltzer EB, Noble PW. Idiopathic pulmonary fibrosis. Orphanet Journal of Rare Diseases. 2008; 3:8.
(ii) EURORDIS, NORD. Idiopathic Pulmonary Fibrosis (IPF) Community. Available at: https://www.rareconnect.org/en/community/idiopathic-pulmonary-fibrosis [Last accessed: September 2013]
(iii) Ama Fuoridalbuio. IPF World. Available at: http://www.ipfworld.org/ [Last accessed: September 2013]
((iv)) NICE clinical guideline 163: Idiopathic pulmonary fibrosis June 2013
((v)) American Thoracic Society/European Respiratory Society. International multidisciplinary consensus classification of the idiopathic interstitial pneumonias. Am J Respir Crit Care Med 2002;165:277-304.
(vi) Raghu G et al. Incidence and prevalence of idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 2006; 174: 810-16. All others: Incidence and Prevalence Database, Timely Data Resources, Inc.
(vii) Cancer Facts and Figures 2009, American Cancer Society. PAH data source: Hamilton, N. and Elliot C. 13.
(viii) Raghu G et al. Incidence and prevalence of idiopathic pulmonary fibrosis. Am J Respir Crit Care Med 2006; 174: 810-16. All others: Incidence and Prevalence Database, Timely Data Resources, Inc.
(ix) Cancer Facts and Figures 2009, American Cancer Society. PAH data source: Hamilton, N. and Elliot C. 13.
SOURCE InterMune, Inc.