Idiopathic pulmonary fibrosis: Uniting European patient voices
What is it like to struggle for breath every single moment of your life? For those living with idiopathic pulmonary fibrosis (IPF), that’s the reality. Completing even the simplest tasks such as climbing stairs or blowing soap bubbles becomes a struggle as scars progressively form in the lungs, preventing oxygen from reaching the bloodstream. The disease is progressive, debilitating and – in most cases – fatal within two to five years of diagnosis. The cause of IPF remains unknown (hence the term ‘idiopathic’) and currently no cure exists.
For people suffering from IPF, the work of patient associations is crucial. They provide a unified voice that highlights the urgency for new research and raises awareness of the disease amongst the public, the medical community and policy-makers.
We are happy to be a supporter of the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF). This EU-wide group is committed to educating relevant stakeholders and the wider public about the needs of IPF patients, while also facilitating the implementation of policy goals laid out in the European IPF Patient Charter, which include:
- Early and accurate diagnosis
- Equal access to care
- A holistic approach to standardise IPF management
- Comprehensive and high-quality information about the condition
- Better access to palliative and end-of-life care
Speaking in an interview, Carlos Lines Millán, President of the EU-IPFF, explained the critical work the Federation is undertaking: “The work of the Federation has two clear primary goals: one is to transfer the stipulations included in the European Charter from EU to national level. The other is to improve patients’ quality of life and increase their life expectancy. Then there are other specific goals such as the implementation of the European IPF Patient Charter itself, where priority is given to providing quality information and fostering research into the disease, to discover a cause and find a solution.”
The needs of patients from diagnosis to palliative care are at the heart of the Federation’s activities, including: the need for early, accurate diagnosis; equal access to care; a holistic approach to disease management; and better information-sharing amongst patients, carers and policy-makers. The primary goal of the EU-IPFF is to reduce inequalities in patient care across Europe at a policy level – and great progress has already been made.
Building a network of support
Almost immediately after its creation in July 2016, the Federation began to support the establishment of the European Reference Network for Rare Pulmonary Diseases (ERN-LUNG). This network of pulmonary specialists will promote access to cross-border healthcare services in order to improve diagnosis and care for patients with a rare pulmonary disease, including IPF.
“The hope for the future of patients with IPF involves two vital projects: one is the ERN-LUNG, in which the EU-IPFF participates as member of the advisory board. Through supporting this highly specialised network, we hope to drive research and achieve greater knowledge of IPF in the future,” said Lines Millán.
Demanding IPF action across Europe
The second vital project and the most ground-breaking success of the EU-IPFF so far is the Written Declaration on IPF, which was adopted by the European Parliament on 12 September 2016. A Written Declaration is a non-binding political tool that reflects the opinion of its signatories. The Declaration on IPF calls on the European Commission and EU Member States to promote research into the causes of IPF and support efforts to find a cure.
Lines Millán and other members of EU-IPFF consider the Written Declaration a tremendous victory, as “it has been supported by 388 MEPs from 28 Member States.”
Eradicating access inequality
Access to treatments for IPF is limited and uneven across Europe. With the Written Declaration, the Federation is calling on EU policy-makers to work with national healthcare authorities and ensure that every person with IPF has the same access to EMA-approved treatments and to lung transplants – the only potential cure for IPF.
“We have to ensure that patients receive access to quality information and that European standards for treatment are unified. In my opinion, these are goals which we all, including patients, caretakers, healthcare professionals and policy-makers, should set for ourselves”, said Lines Millán. Building on the momentum of the Declaration, the EU-IPFF will continue to promote policy changes that will create a brighter future for those with IPF and their loved ones.