InterMune® Supports Launch of First Ever European Patient Charter on Idiopathic Pulmonary Fibrosis (IPF) in European Parliament
MUTTENZ, Switzerland, September 30, 2014 /PRNewswire/ --
InterMune® is pleased to support the launch of a new European Patient Charter for people with idiopathic pulmonary fibrosis which is being presented in the European Parliament on 30th September, during IPF World Week 2014.
The Charter, which has been developed by 11 patient organisations* and healthcare professionals from 9 EU countries advocating the well-being of people living with IPF, calls for more standardised care and equal access to diagnosis and treatment for patients with IPF in Europe. The initiative aims to reach 35,000 signatures via an online public petition, equal to the number of people in Europe who are newly diagnosed with IPF each year.[1],[2],[3],[4]
Following a series of meetings with advocacy groups and healthcare professionals, the Charter was compiled based on a consensus on the key priorities for IPF patients. It includes recommendations on equal access to treatment and diagnosis as well as the importance of holistic management of the condition and improvements in palliative care.
The intention is that the Charter is presented in the European Parliament to raise awareness of these issues and to bring them to the attention of European policy makers. It will also be used to engage key stakeholders in the EU countries to help drive change and improve the lives of people with the condition.
IPF is an irreversible, progressive and ultimately fatal fibrotic interstitial lung disease[5],[6],[7] IPF has a projected survival rate of only 20-40% after 5 years[8],[9] making it more rapidly lethal than many types of cancer.[10] The disease causes scarring of the lungs, irreversibly destroying normal lung architecture and hindering a person's ability to breathe.[11]
Rosalba Mele, President of the Italian Association "AMA Fuori dal Buio" in Modena, Italy - one of the 11 patient organisations promoting the initiative, said: "The development of the Charter represents the greatest joint effort that was ever realised by the IPF community in Europe. For the first time patient organisations from across Europe spoke with a unified voice to shed light on the needs of IPF patients. This would not have happened without the support of InterMune® which has supported us and provided the opportunity for patient groups across Europe to come together, share their challenges and develop this Charter which we hope will support the need for change in the management of IPF and give a better future to patients living with IPF."
Giacomo di Nepi, Executive Vice President and Managing Director of InterMune® in Europe, stated: "We are proud to play our part in supporting the Charter initiative, which will be essential for improving care and access to healthcare services across Europe. The development of a Charter provides clinicians, patient advocacy groups and patients the opportunity of working together to identify the key concerns that can and must be addressed by policy makers."
InterMune® is proud to support European patient associations in their commitment to develop an IPF Charter that will benefit IPF patients. InterMune® has contributed financially to the organisation of two meetings, media support and the launch in the EU parliament.
Notes to Editors
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is an irreversible and ultimately fatal disease characterized by progressive loss of lung function due to fibrosis (scarring) in the lungs, which hinders the ability of the lungs to absorb oxygen.[5],[6],[7]IPF inevitably causes shortness of breath, lung function deterioration and decreased exercise tolerance.[5],[9],[12],[13] IPF patients follow different and unpredictable clinical courses and it is not possible to predict if a patient will progress slowly or rapidly, or when the rate of decline may change.[12],[13] Periods of transient clinical stability in IPF, when they occur, inevitably give way to continued disease progression.[6] Without treatment, the median survival time from diagnosis is 2-5 years,[5],[9],[12],[13] with a five-year survival rate of approximately 2040 percent[8],[9] which makes IPF more rapidly lethal than many malignancies, including breast, ovarian and colorectal cancers.[10] IPF typically occurs in patients over the age of 45[14] and tends to affect slightly more men than women.[6],[14]
About InterMune®
InterMune® is a biotechnology company focused on the research, development and commercialization of innovative therapies in pulmonology and orphan fibrotic diseases. In pulmonology, InterMune® is focused on therapies for the treatment of idiopathic pulmonary fibrosis (IPF), a progressive and fatal lung disease. Pirfenidone is approved for marketing by InterMune® in the EU and Canada as Esbriet▼®. Pirfenidone is not approved for marketing in the United States. InterMune® resubmitted the pirfenidone New Drug Application (NDA) to the U.S. FDA on May 23, 2014, to support regulatory registration in the United States. The resubmission has been accepted by the FDA and assigned a target PDUFA date of November 23, 2014. The FDA has granted pirfenidone Breakthrough Therapy Designation. On August 24, 2014, Roche and InterMune® announced they had entered into a definitive merger agreement for Roche to fully acquire InterMune® at a price of $74.00 per share in an all-cash transaction. The closing of the transaction is expected to take place in 2014. 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 http://www.intermune.com. A full summary of product characteristics can be found on the Electronic Medicines Compendium.[15]
* 11 patient organisations including AMA Fuori dal Buio, Belgische vereniging voor longfibrose, British Lung Foundation, Association pour la fibrose pulmonaire idiopathique, Irish Lung Fibrosis Association, Action for Pulmonary Fibrosis, Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopatica, Lungenfibrose, Longfibrose Patientenvereniging, LOT Austria, Long Fonds.
References
1. Gribbin J, et al. Thorax 2006; 61: 980-985
2. Navaratnam V, et al. Thorax 2011; 66: 462-467
3. Ley B, and Collard HR. Clin Epidemiol 2013; 5:483 -492
4. Eurostat News Release. Available at http://ec.europa.eu/eurostat. Accessed in September 2014
5. American Thoracic Society/European Respiratory Society. Am J Respir Crit Care Med 2002; 165: 277-304
6. Raghu G et al. Am J Respir Crit Care Med 2011 ; 183 :788-824
7. Travis WD et al. Am J Respir Crit Care Med 2013 ; 188 :733-748
8. Bjoraker JA et al. Am J Respir Crit Care Med 1998; 157:199-203
9. Collard HR et al. Am J Respir Crit Care Med 2003; 168:538-542
10. Cancer Facts and Figures 2009, American Cancer Society. PAH data source: Hamilton, N. and Elliot C.
11. American Thoracic Society/European Respiratory Society. Am J Respir Crit Care Med 2002;165:277-304
12. Kim DS et al. Proc Am Thorac Soc 2006; 3:285(292
13. Meltzer EB, Noble PW et al. Orphanet J Rare Dis 2008; 3-8
14. National Institute of Health & Clinical Excellence. Clinical Guideline 163:Idiopathic Pulmonary Fibrosis. June 2013
15. http://www.medicines.org.uk/emc/medicine/26942
PRC-3332
Date of preparation: September 2014
For further information, please contact:
Manuela Maronati, Senior Vice President Sales, Marketing and Advocacy, Europe, InterMune International AG, +41 61 466 80 41 / mmaronati@intermune.com
Weber Shandwick, Geneva +41 22 879 85 00 / sthomas@webershandwick.com
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