Each association and organization need a clear strategy.
Our original call to action was launched in 2012 in the European Parliament which laid down our mission. After a decade it was high time to revisit those objectives and assess whether some of the goals are still relevant and whether some of them need more attention or resources.
We launched the reviewing process in early 2020, however it was put on hold due to COVID pandemic. One year later a roundtable was established, including a medical review committee of Prof. Marion Delcroix, Prof. Marius Hoeper, Prof. Marc Humbert, Prof. Adam Torbicki and Ass. Prof. Gabor Kovacs, which embrace all of the stakeholders on the field of pulmonary hypertension: representatives from various patient associations and the regulatory body and representatives from the pharmaceutical companies.
The COVID pandemic changed the business-as-usual reviewing process: there were no face-to-face meetings at all, but online meetings and drafting – the position paper was reviewed part-by-part with the lead of either one of the members of the medical review committee or PHA Europe.
After many rounds of discussion, the reader can hold in their hands a heavily re-written, freshly looking and updated new call to action. We endeavored to make it easily understandable and put special emphasis on graphics to attract attention and highlight some of the key points. The call to action also consists of a standalone executive summary which can be translated into various languages to facilitate discussion with stakeholders on country level.
We were waiting for the release of various COVID measures to publish our position paper. Finally, early March the European Parliament opened the door for in person meeting.
On the 26th of April the roundtable members gathered in the European Parliament, Brussels, Belgium to officially launch the new position paper.
The event of our call to action was one of the first meeting organized in the European Parliament and it was the very first and flagship event of the MEP Lung Health Group interest group PHA Europe is part of and collaborating with other lung disease patient associations and the European Respiratory Society (ERS).
The meeting was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS president). MEP Ujhelyi’s introductory speech was followed by Prof. Marion Delcroix lecture which covered the rare diseases, pulmonary hypertension and EU policies. Jose A. Valverde outlined the role of the European Commission on the field of health and outlined some aspects of the European Reference Networks (ERNs). These general presentations led to the introduction of the call to action by Gergely Meszaros who also covered the patient empowerment concept of the paper.
The next sessions followed the concept and main parts of the paper: Ass. Prof. Laurent Godinas talked about the importance of screening and awareness, while Prof. Adam Torbicki about access to treatment and special centres. Ass. Prof. Gabor Kovacs highlighted possible ways of research, including the use of artificial intelligence and the programme was closed by Eva Otter, president of PHA Europe, who talked about psychosocial support.
The presentations are available from here.
The event was live streamed on our social media channels – the online event collected 90 interested persons and already more than 600 views of the recording.
The meeting was a great success and brought the stakeholders closer to collaborate even more in the future.
We expect more views once the video is edited and published on our social media.
Our work with the call to action has not ended at this point: many action items have been identified and national activities are also planned.
(detailed report will follow)