Written Declaration Roundtable at the European Parliament with representatives from the European Commission and the Council

On November 17th 2016, MEP Elena Gentile hosted an invitation-only workshop in the European Parliament to discuss the follow-up to the IPF Written Declaration. The aim was to identify concrete actions that EU-IPFF could implement together with the EU institutions and agencies. Present at the first IPF European Parliament Roundtable were representatives from the Commission, the Council and the European Medicines Agency and of course members of EU-IPFF and the Scientific Advisory Board of EU-IPFF. Carlos Lines Millán points out “this roundtable discussion was more than we expected and we are so grateful for the support that MEP Gentile has provided EU-IPFF.”

During the rountable, Marlies Wijsenbeek, one of the founding members of the Scientific Advisory Board, presented the research needs for IPF; highlighting that although progress had been made including the approval of two medicines that slow down disease progression, a lot still needs to be accomplished, including:

Better understanding of the disease mechanism in the hopes of someday being able to prevent or stop the disease

  • Facilitate early diagnosis
  • Continue treatment trials to stabilise and, ultimately, cure the disease
  • Develop precision medicine
  • Improve quality of life

Dr. Wijsenbeek points out that “pulmonary diseases are amongst the least funded conditions and I hope that the roundtable discussion has opened the eyes of policy-makers to encourage them to fund more, especially for the IPF cause.”

In addition, to discussing the research needs, Dr. Wim Wuyts, provided an overview of lung transplants and why they are so important for the IPF community. Dr. Wuyts called for immediate action by the European parliament to address the key problems within lung transplantation including:

  • Increased information and education
    • Better information on transplantation programmes and referral systems
    • Clear follow-up pathway for patients who are not eligible for a transplant
  • More uniformity in the transplantation process
    • Improve availability of lung transplant across Europe and the ability of patients to receive transplants across borders, including pooling organs
  • Increase of donor organs
    • Support opt-out system to increase the number of available organs
    • Raise awareness of the importance of organ donation

In addition, during the Roundtable Discussion, Dr. Francesco Bonella delivered a presentation on the unmet needs and the ensuing call to action for patients and HCPs. Dr. Bonella first stressed the many challenges HCPs face in caring for IPF patients, from diagnosis to the complex management of IPF, and the research gaps.

Besides our Scientific Advisory Board presenting the issues that the IPF community faces, we were able to listen to some really interesting talks, such as one from Isabelle Moulon, head of public engagement at the European Medicines Agency (EMA), who presented patient involvement in the decision-making processes within EMA. She explained that there were three ways for patients to become involved in EMA:

1.     Representation of all patient groups in the Management Board and the Scientific Committees

2.     Representation of specific patient organisations in the Patients’ and Consumers’ Working Party, EMA consultations and workshops

3.     Individual patient experts can be involved in some activities such as scientific advisory/ ad hoc expert groups or scientific committee consultations

Ms. Moulon invited EU-IPFF to respond to the open call for expression of interest that is available on the EMA website as well as a meeting in London at EMA to discuss in more details opportunities of collaboration and involvement in EMA-led initiatives. Klaus Geissler, member of the EU-IPFF Executive Board points out “It is of great importance that patients are part of the medical pathway, at the end of the day it is we who take the medicine. Ms. Moulon’s presentation was very insightful and we are grateful for her assurance, I am sure that EU-IPFF will follow up her invitation.”  

Again, EU-IPFF would like to thank MEP Gentile for concluding a successful session as well as thanking all speakers. MEP Gentile concluded the meeting by pledging to write a letter to future Presidencies of the European Council to discuss the implementation of the recommendations of the Written Declaration – we look forward to hearing back from her.