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.


8th Advancing ILD Research (AIR) Educational Meeting

Klaus Geissler was invited to participate in the 8th edition of the Advancing ILD Research (AIR) Educational Meeting to provide his viewpoint as a patient. The event was held on 17 November in Munich.

Mr Geissler co-led, together with Dr. Francesco Bonella, Chair of the EU-IPFF Scientific Advisory Board, two roundtable discussions on the topics of patient involvement in research and identification of research needs in interstitial lung diseases (ILDs). To lit the debate on patient-centricity, panelists were asked to address critical questions such as: How have your patients helped guide your thoughts on research needs ?  Have you already involved patients in your research ? Would you consider formalizing the further involvement of patients in research ? How do you feel it would beneficial to include patients? What would be the challenges of including patients?

The questions triggered very interesting discussions. Agreement was reached on the concept that greater involvement of patients would improve recruitment of patients participating in clinical trials. This could also help identify new outcomes, implement inclusion criteria, consider different subgroup of patients who are generally excluded from clinical trials, such as those with advanced disease. An important learning from the debate is that more discussion is needed around the ethical implications of patient involvement in steering committees for the design of new clinical trials given the very stringent rules that exist to regulate interactions between companies and patients.  “As a patient, I firmly believe that more patient involvement in research will be beneficial. Patient organisations and their leaders have the best knowledge on how to live/survive with this disease and know how to assess acceptable risks versus potential benefits of clinical trials for the development of new therapies” – commented Mr. Geissler in his concluding remarks.

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EU-IPFF and European Parliament Celebrate Achievements on Rare Disease Policies

The EU-IPFF and MEP Elena Gentile (S&D, IT) hosted an event to discuss the health-related achievements of the current legislative term and look ahead to future political agendas.

Brussels – 20 November 2018. The Group of Socialists & Democrats and the European Idiopathic Pulmonary Fibrosis Federation (EU-IPFF) hosted an event at the European Parliament on November 20, 2018. The event titled, “A forward-looking agenda for rare diseases: bringing Europe closer to its people”, reviewed what has been achieved on the topic of rare diseases in the past four years and what remains to be done.

Against the backdrop of the current mandate of the European Parliament and European Commission drawing to a close, the event brought together stakeholders from across the health sector, as well as EU policymakers – notably MEP Elena Gentile (S&D Group, IT) who discussed the role of the European Parliament in keeping rare diseases at the top of the policy agenda. Annika Nowak, Member of the Cabinet of Commissioner for Health and Food Safety, Vytenis Andriukaitis, spoke about how the Commission will continue to ensure that rare diseases remain a political priority for the new legislature. In addition, Franz Schaefer, Chair of the ERNs Coordinators Group discussed how to scale-up successful initiatives within the European Reference Networks. 

Attendees at the event celebrated the achievements of the past few years, made possible by joining forces at a European level. These include the establishment of the European Reference Networks (ERNs) connecting highly-specialized European healthcare professionals working on rare diseases.

However, it was also acknowledged that gaps remain within and across EU countries when it comes to delivering care and treatment for complex, chronic conditions such as Idiopathic Pulmonary Fibrosis (IPF). These have been identified within a new Benchmarking Report which was presented by the EU-IPFF during yesterday’s event, and is available at this link.

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The Report outlines the current state of IPF care and management in Europe, identifying best-performing countries along with challenges that demand greater political attention and an immediate response. It showed an alarming variation in access to specialised care across countries and it called for the implementation of existing guidelines to help standardise processes and address health inequalities.  The Report also showed that greater awareness of IPF signs and symptoms among general practitioners is needed to address delays in diagnosis, to increase referral to specialist care and to improve timely access to treatment, which can slow disease progression.  It also highlights that too many barriers exist in access to non-pharmacological treatment including lung transplantation, supplemental oxygen, pulmonary rehabilitation, and palliative care.

Speaking about the importance of EU support for rare disease patients, EU-IPFF President, Carlos Lines Millán, said “The involvement of the European institutions fostered the hope of many patients, doctors and researchers. This institutional support has been translated into recommendations to member countries, into research aid and into better policies.”

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However he also noted the need for future leaders to continue with the work and ensure rare diseases remain a political priority, adding  “Current decision-makers can still have a word to say on rare diseases, and notably by securing sufficient funding for scientific research in order to abolish the “idiopathic” name from this disease”.  

While healthcare delivery remains a Member State competence, there is a role for the EU to play in sharing best practices and pooling resources, to benefit of all European IPF patients. The upcoming 2019-2024 European parliamentary term represents an opportunity for future EU leaders to promote radical policy change that can improve healthcare services and outcomes. 

A full report of the event is available at this link.

To receive more information on the EU-IPFF activities, and notably on the Benchmarking Report, do not hesitate to contact the EU-IPFF Secretariat at secretariat@eu-ipff.org.

*ENDS*

About the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) brings together 17 European national patient associations from twelve European countries. Its mission is to serve as the trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and funding research. EU-IPFF collaborates with physicians, medical organisations, people with IPF, caregivers and policy-makers throughout Europe. For further information, please visit www.eu-ipff.org.

About Idiopathic Pulmonary Fibrosis

IPF is a rare, long-term, progressive disease that affects the fragile tissue in the lungs. It leads to a gradual, persistent decline in lung function. IPF typically occurs in people over 45 years of age, and is more common in men than women. About 110,000 people in Europe live with IPF, and 35,000 new patients are diagnosed every year. The disease is irreversible and, without treatment, half of all patients will die within 2-5 years of diagnosis.

EU-IPFF publishes an article on Health Europa Quarterly

Carlos Lines Millán, the President of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF), was interviewed by Health Europa, on “The challenges of idiopathic pulmonary fibrosis”.

This was a great opportunity to raise awareness on this unknown disease, and to promote the Federation’s activities and goals, including timely diagnosis and an equal standard of care across Europe.

Read the full article here: https://www.healtheuropa.eu/idiopathic-pulmonary-fibrosis/87186/

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To access the full version of the article, please visit:

Article originally published on: https://www.healtheuropa.eu/idiopathic-pulmonary-fibrosis/87186/
Reproduced by kind permission of Pan European Networks Ltd, www.healtheuropa.eu

© Pan European Networks 2018

 

 

MEP Elena Gentile wins the EURORDIS policy maker award

We are glad to announce that Elena Gentile (S&D, IT), Member of the European Parliament, has been awarded with the EURORDIS policy maker award this year for supporting the cause of patients living with rare diseases and Idiopathic Pulmonary Fibrosis (IPF).

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In 2014, she gave voice to Idiopathic Pulmonary Fibrosis (IPF) Patient Groups by supporting the first European IPF Patient Charter in the European Parliament. Two years later, she authored and mobilised Members of the European Parliament around a Written Declaration on IPF in 2016, which successfully passed with majority of the Members of the European Parliament (388 Members). The Written Declaration urged the Commission and the Council to promote research into IPF to help find its cause and cure; to collaborate with Member States as to enable access to EMA approved orphan drugs for IPF patients; and to ensure equal access to non-pharmacological treatments, including lung transplants, for patients across the Union. Thanks to her support, the Italian IPF Member Organisation (AMA Fuori Dal Buio) managed to organise a hearing in the Italian Senate, which triggered the inclusion of IPF into the National Health Basket in 2016, allowing all Italian IPF patients to access treatment across the country.

In 2017 she has endorsed EU-IPFF’s awareness campaign “Listen for the Sounds of IPF” and hosted a Parliamentary roundtable to bring to the attention of European policy stakeholders the recommended actions to improve early diagnosis of rare diseases and better connect primary care providers and recognised centres of excellence across Europe.

Being a trained doctor herself, she understands how difficult it can be to correctly diagnose and manage complex conditions – especially rare diseases – and recognises the need  for political support to ensure that resources and expertise are pooled to ensure that the best care is provided and made accessible to all patients regardless of their origin and income. To show her commitment and dedication to the improvement of rare disease policy, she is also supporting the Parliamentary advocates for rare diseases, which was officially launched in October 2017.

MEP Gentile has given voice to the IPF community and has broken the silence that has isolated for years patients with this chronic, progressive, irreversible and fatal disease. Her dedication and commitment to put IPF on the European Agenda has and continues to give hope to IPF patients and their families, who are fighting to find the cause of the disease and a cure.

More information on the EURORDIS Black Pearl Award is available here

“We can make Idiopathic Pulmonary Fibrosis an example of good practice that can be used as a model and replicated for other rare diseases, showing how institutions can work together to meet the needs of citizens.”

- Elena Gentile, Member of the European Parliament

Putting early diagnosis of rare diseases on top of the European agenda: one year after the Written Declaration on idiopathic pulmonary fibrosis

In follow up to the Written Declaration on IPFEU-IPFF in collaboration with MEP Elena Gentile and MEP Renate Sommer organised an event at the European Parliament on 26 September entitled ‘Putting early Diagnosis of Rare Diseases on Top of The European Agenda: One Year after the Written Declaration on idiopathic pulmonary fibrosis. 

The meeting provided a platform for a call to action on early diagnosis of rare diseases with IPF serving as a leading example for putting rare diseases on the European political agenda. To this aim, the parliamentary event brought together relevant stakeholders in the IPF/ rare diseases field, including healthcare professionals, rare diseases organisations and international advocacy groups. Furthermore, the meeting provided an opportunity to present to policy-makers the IPF international campaign Listen for the Sounds of IPF, which was launched during the IPF World Week 2017. 

This event was held under the patronage of the European Parliament. 

The agenda is available here. The event's report is available here. A selection of pictures can be found here

 

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EU-IPFF mobilises the IPF Patient Community to launch a joint awareness campaign on early signs and symptoms of IPF

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Milan, Italy, 9 September - The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) is proud to announce the launch of the “Listen for the Sounds of IPF” Campaign, a global awareness effort on better and earlier diagnosis of IPF that was developed in collaboration with 24 IPF organisations from across the globe.

As a rare disease, IPF is often misdiagnosed or mistaken for other pulmonary diseases. To avoid delayed or faulty diagnosis, it is crucial that general practitioners understand and recognise the manifestations of IPF and refer the patient to a respiratory specialist as soon as possible. Together with a multidisciplinary team, the specialist can devise a personalised treatment plan for the patient, which can potentially slow the decline in lung function, boost the patient’s quality of life and improve prognosis.

To ensure better diagnosis and expedite access to treatment, the one-year long campaign highlights the importance of recognising early signs and symptoms of IPF and of accelerating referral to a respiratory specialist. It further aims to raise awareness around IPF and increase the understanding of the ideal IPF diagnostic path.

Launched on the opening day of the European Respiratory Society (ERS) Congress, IPF organisations will organise local campaign eventsduring IPF World Week and Pulmonary Fibrosis Awareness Month in September 2017.

Today, EU-IPFF is present at the ELF World Village to share the key messages of the campaign on the importance of early and accurate diagnosis.

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About the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF)

 EU-IPFF is made up of 14 patient organisations from ten European countries and is the first such pan-European organisation. Its mission is to serve as the trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and funding research. EU-IPFF collaborates with physicians, medical organisations, people with IPF, caregivers and policy-makers throughout Europe. EU-IPFF aims to defend the interests of IPF patients in Europe, by fighting for equal access to treatment and information and ensuring exchange of information between national patient groups. For further information, please visit www.eu-ipff.org

 

About Idiopathic Pulmonary Fibrosis

Idiopathic Pulmonary Fibrosis (IPF) is a rare, long-term, progressive disease that affects the fragile tissue in the lungs. It leads to a gradual, persistent decline in lung function.[1] IPF typically occurs in people who are more than 45 years of age, and the average patient age is 65.[2] The disease is more common in men than women.[3] About 110,000 people in Europe have IPF, and 35,000 new patients are diagnosed each year.[4] The disease is irreversible, and without treatment, half of IPF patients will die within 2-5 years of diagnosis.[5]

 

The EU-IPFF receives sponsorship from Boehringer Ingelheim and Roche. 

 

Media Contact

For media inquiries please contact:

Marina Sardone

secretariat@eu-ipff.org

 

 

[1] L. Nalysnyk, J. Cid-Ruzafa and P. Rotella, “Incidence and prevalence of idiopathic pulmonary fibrosis: review of the literature,” Eur Respir Rev, vol. 21, no. 126, pp. 355-361, 2012.

[2] J. Cordier and V. Cottin, “Neglected evidence in idiopathic pulmonary fibrosis: from history to earlier diagnosis,” Eur Respir J, vol. 42, p. 916–923, 2013.

[3] E. Meltzer and P. Noble, “Idiopathic pulmonary fibrosis,” Orphanet, March 2008. [Online]. Available: http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN& data_id=7029&Disease_Disease_Search_diseaseGroup=Idiopathic-pulmonary-fibrosis& Disease_Disease_Search_diseaseType=Pat&Disease(s)/. [Accessed 13 April 2017].

[4] IPF World, “European IPF Charter,” [Online]. Available: http://www.ipfcharter.org/. [Accessed 21 July 2015].

[5] B. Ley, C. Ryerson and E. Vittinghoff, “A multidimensional index and staging system for idiopathic pulmonary fibrosis,” Ann Intern Med, vol. 156, no. 10, pp. 684-691, 2012.

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.

Idiopathic Pulmonary Fibrosis, here’s the European Charter

Idiopathic Pulmonary Fibrosis is a rare pathology and is not well known

And just to step out of the shadows, the European IPF Charter was presented yesterday at the EU Parliament. The initiative has been promoted by 11 patient organizations and will be discussed on occasion of the IPF World Week. Their aim is to raise awareness of this fatal condition and promote better access to care for patients in Europe. Firstly, by collecting 35,000 signatures in representation of the number of new cases diagnosed every year in Europe. Idiopathic Pulmonary Fibrosis, that hits mainly people aged over 65, is a progressive and irreversible chronic lung disease. In those affected, the normally thin and pliable tissue of the lungs becomes increasingly thick and prevents oxygen from moving into the bloodstream, thereby leading to a continuous decline in lung function. In Europe, there are currently between 80,000 and 110,000 people living with IPF and an approximate 35,000 people are newly diagnosed every year.