Breathing hope for IPF treatment in Europe

Political attention to idiopathic pulmonary fibrosis could make a difference for the hundreds of thousands of Europeans living with the disease, writes Elena Gentile.

Diseases are often referred to as 'great equalisers'. No one chooses to fall ill nor what symptoms they suffer. Yet not all diseases are equal in terms of morbidity and mortality. Idiopathic Pulmonary Fibrosis is one of those diseases that is not only rare, chronic and ultimately fatal but is also one that also lacks both a treatment and a cure. 

This is why I, as a Member of the European Parliament and also as a trained doctor, have chosen to take political action to raise awareness of this fatal disease, with its devastating impact on patients  and their families. 

Imagine feeling out of breath after climbing just a few stairs, or suffering a violent coughing attack for which no explanation can be found. You consult a number of doctors and eventually discover the cause of your symptoms; a condition you have never heard of before. 

This scenario and diagnosis has become a reality for around 111,000 Europeans that live with Idiopathic Pulmonary Fibrosis (IPF). A further 35,000 people are diagnosed with IPF every year. To date, no cure has been developed.

Where patients experience the feeling that there is no way out, political attention at European level can make a difference in the daily battle of IPF patients and their loved ones. This is why, together with colleagues from across Europe and across the political spectrum, we have put forward a written declaration on IPF to raise awareness about this disease. 

Through this written declaration, we hope to encourage the European Commission and member states to work together to support timely access to treatment. This way, we seek to address delays in pricing and reimbursement by national bodies and to address inequalities in access to lung transplantation. 

My colleagues that, with me, support the written declaration also believe that we can advance treatment through research and innovation in the pharmaceutical field. The Commission can play a key role in funding IPF research activities and in supporting opportunities for patient participation. In this context, we are pleased to see that last month the call for European Reference Networks (ERN) was published by the Commission. 

An ERN on rare lung diseases, including IPF, would be a crucial milestone towards improved cross-border collaboration of healthcare professionals and the establishment of a standardised approach for IPF care.

As my relationship with the IPF patient community and the newly established European IPF & Related Disorders Federation has grown over the past two years, so has my motivation to ensure that IPF is placed on the EU's agenda. 

I strongly encourage all Members of the European Parliament to support us in passing the written declaration on IPF onto the Commission and member states and showing European unity in standing up for its most vulnerable citizens.