To mark international Rare Disease Day, InterMune has announced its support for the development of a European Patient Charter for people with idiopathic pulmonary fibrosis (IPF).
IPF is an irreversible, progressive and ultimately fatal fibrotic interstitial lung disease,. IPF has a projected survival rate of only 20-40% after five years1, 2 making it more rapidly lethal than many cancers3, 4. The disease causes scarring of the lungs, irreversibly destroying normal lung architecture and hindering a person's ability to breathe.
The Charter will see, for the first time, patient advocacy groups and healthcare professionals come together at a European level to campaign for more standardized care and equal access to diagnosis, treatment and after care options for those with IPF in Europe.
Advocacy groups and healthcare professionals from a number of European countries will meet in Brussels on March 8 this year to identify and agree the key priorities for IPF patients. The Charter will then form a central part of efforts to raise awareness of these issues and to bring them to the attention of national and European policy makers.
The Charter will be launched via an online public petition and a lunch event at the EU Parliament later this year.
Commenting on the initiative, Cristina Coteanu, the lead candidate for the Fédéralistes Démocrates Francophones in Belgium and a key supporter of the initiative, said:
"Despite its devastating impact on patients, IPF has not received the attention it deserves in Europe. This initiative is an important step forward in raising awareness of the condition and for galvanizing national and European policy makers into taking action to address inequalities in care and treatment. I look forward to supporting the Charter when it has been developed, and to securing the backing of colleagues from across the political spectrum."
Lida Naber of the Dutch Pulmonary Fibrosis Society (Longfibrose NL) added:
"We strongly believe that all pulmonary fibrosis patients throughout Europe should receive the best available treatment and support, alongside appropriate reimbursement. It is important for the IPF community to speak with one voice and we are looking forward to campaigning with our colleagues to push treatment and care up the agenda and to address unacceptable inequalities in care."
Dr Penny Woods, Chief Executive of the British Lung Foundation, says:
"We are very happy to be a part of the professional group working on the European IPF Charter. During World IPF Week last year, the BLF published the first ever UK IPF patient charter, which was taken to the Pan-European IPF Conference in Nice in November.
"Working together to form a patient charter that outlines improvements to be made in IPF research, treatment and care is key in order to make the necessary and significant advances in regards to this devastating lung condition.
"We hope that the charter will not only highlight the need for further research into this disease, but also outline the need for patients to receive a timely and accurate diagnosis that is followed by adequate care."
Giacomo di Nepi, General Manager of InterMune Europe stated:
"InterMune is dedicated to IPF research and the development of treatments for this irreversible disease. We are pleased to play our part in supporting the Charter initiative, which will be essential for improving care and access to healthcare services. 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 organization of the first meeting in Brussels.