EU-IPFF Initiates a debate on Rare Diseases in the European Parliament’s Plenary Session

On the 13th of December 2018, during the last plenary session of the year, the European Parliament held a debate based on the oral question (OQ) on rare diseases addressed to the European Commission, was initiated by EU-IPFF.

EU-IPFF started its policy commitment in 2014 with the development of the first European IPF Patient Charter, and has since then encouraged the adoption of a   Written Declaration on IPF by the European Parliament in 2016, and published its  first EU-IPFF Benchmarking Report on Access to IPF care in Europe in November 2018. The development of the oral question and the success of having it included in the European Parliament’s plenary agenda represents a great milestone for the Federation and for patients with a rare disease, as it shows the commitment of the European institutions to take action in this field.

We are very proud to have led this process together with some members of the European Parliament, namely John Procter (ECR, UK), Estefanía Torres Martínez (GUE/NGL, ES), and Tilly Metz (Greens/EFA, LU), as well as patients and healthcare providers. Together we managed to move the oral question forward and have it included in the plenary agenda.  We are also very thankful to MEP Elena Gentile (S&D, IT) who has always supported the work of the Federation in order to promote better EU coordination for rare diseases and IPF.

The plenary discussion was hosted by the European Parliament in Strasbourg and was opened by one of the OQ rapporteurs Gesine Meissner (ALDE, DE), who presented the oral question to the Vytenis Andriukaitis, Commissioner for Health & Food Safety. She shared a heart-warming personal story of how her family was affected by a rare disease. She pointed out that there are between 6.000-8.000 rare diseases in Europe and they affect about 30 million people, which is a considerably large number. As Ms. Meissner notes: “Essentially, a rare disease means that when people get the diagnosis, there are a lot of question marks.” We at EU-IPFF are aware of the emotional state post diagnosis, and work at a national and European level to ensure that we can provide patients with information and a support network.

Ms. Meissner ended her personal story addressing the following questions to the European Commission and opening the floor for the debate. The questions included:

  • What measures has the Commission taken so far to ensure accurate and timely diagnosis of rare diseases, as well as access to affordable medicines required to treat them, across the EU? How does the Commission promote research in the field of rare diseases and into the development of new or improved methods for early diagnosis? How does it intend to further these efforts and achieve measurable improved outcomes for rare disease patients in all EU Member States?

  • How does the Commission intend to guarantee access to information and to medicines and medical treatment for rare disease patients throughout the EU? How does the Commission promote better coordination and learning across Member States, given that access to early and accurate diagnosis can have a significant impact on the patient's prognosis and quality of life?

  • What are the Commission's plans to ensure sustainable funding of patient organisations supporting the European Reference Networks on rare diseases, for example by means of the European Joint Programme on Rare Diseases?

A lively discussion took place during the session, including statements from:

  • Vytenis Andriukaitis, Commissioner for Health & Food Safety;

  • Sirpa Pietikäinen (EPP, FI);

  • Andrejs Mamikins (S&D, LV);  

  • Ivan Jakovčić  (ALDE, HR);

  • Paloma López Bermejo (GUE/NGL, ES);  

  • Ana Miranda (Greens/EFA, ES);

  • André Lissen (ENF, NL).

Commissioner Andriukaitis stated that, “In the past 20 years the Commission had been working on rare diseases, creating networks and encouraging innovative ways of working and research.” Rare diseases remain a priority for the European Commission and the work that has been done so far reflect this commitment. For example, the Commission supported the establishment of the European Reference Networks (ERNs), which are designed to facilitate access to timely diagnosis, linking experts throughout Europe. The EU-IPFF is for instance cooperating with ERN-LUNG (European Reference Network on Rare Pulmonary Diseases) in order to ensure that the patient voice is heard throughout the various ERN activities.  

MEP Pietikäinen (EPP, FI) pointed out that a lot could be done at a European level. She specifically mentioned the cross-border healthcare directive and the eHealth framework as instruments to increase timely diagnosis, which is of great importance, especially for IPF patients. Furthermore, MEP Mamikins (S&D, LV) pointed out that there is a European need to “…ensure that rare diseases are adequately coded, support national systems, improving recognition and visibility of rare diseases, and linking ERNs and identifying alternative treatment options.”

Commissioner Andriukaitis concluded the plenary session by stating “no single country has the knowledge or capacity to tackle these diseases on their own. Together, we can share best practice, coordinate research, pool data and act more effectively and decisively.” EU-IPFF is in full agreement and hopes to further accelerate positive change throughout 2019 and beyond.

We hope that by driving this process we have managed to launch a message to future European leaders to continue the conversation on how to improve the lives of patients living with rare diseases. We really believe that now is the time for European institutions to lead that conversation and involve all relevant parties, including patient organisations, in the identification of solutions to improve quality of life for rare disease patients across Europe. We are committed to continue working with all the relevant stakeholders to ensure that action on rare diseases remains a priority area at European and national level.