First European Patient Charter on IPF Presented in European Parliament by 11 Patient Organizations

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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IPF in EUFor the first time ever, a new European Patient Charter for patients who suffer from idiopathic pulmonary fibrosis (IPF) was developed by a group of advocates and presented to the European Parliament on September 30, during IPF World Week 2014. Biotechnology company InterMune, which is dedicated to research, development, and commercialization of innovative therapies in pulmonology and orphan fibrotic diseases, lobbied hardest for the release of the charter.

The first of its kind European Patient Charter was developed in a collaboration with 11 patient organizations and healthcare professionals from nine different EU countries as a way of advocating for improved quality of life for patients living with IPF. The purpose of the charter is to promote the standardization of care provision among patients, as well as equality of access to diagnosis and treatment procedures among IPF patients all over Europe.

“The development of the Charter represents the greatest joint effort that was ever realized by the IPF community in Europe. For the first time patient organizations from across Europe spoke with a unified voice to shed light on the needs of IPF patients,” stated Rosalba Mele, the president of the Italian association AMA Fuori dal Buioone of 11 organizations that is promoting the initiative.

“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.”

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Representing top priorities for IPF patients, the charter is a result of a series of meetings between advocacy groups and healthcare professionals, who are seeking to make their case to policy makers with one voice. It is composed of recommendations not only about diagnosis and therapy accessibility, but also about managing the disease in a holistic manner, and making updates to palliative care. Presenting at the European Parliament is a way of garnering attention about the issues related to the disease in order to raise awareness among European policy makers.

“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,” said the executive vice president and managing director of InterMune in Europe, Giacomo di Nepi.

The charter is also expected to engage key stakeholders in each country of the EU, in order to conduct changes in their countries and improve patients’ lives. The initiators of the charter are now looking to collect 35,000 signatures through an online public petition as a symbolic act, since 35,000 is the number of people that are newly diagnosed every year in Europe with the irreversible, progressive and deadly disease that causes scarring of the lungs, irreversible destruction of the lungs, and hindering breathing. The disease has a survival rate of only 20-40% after 5 years.

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