PHA Europe decided in 2011 to convene a pulmonary hypertension roundtable to provide a forum for the sharing of PH knowledge and expectations across diverse stakeholders and geographic boundaries. At a meeting in Amsterdam in September 2011, the roundtable members, who reflected a wide range of clinical, patient, research, and industry interests, discussed the need for all PH patients to have access to optimal screening and diagnosis, appropriate treatment, psychosocial support, and integrated care through centres of expertise. Members subsequently agreed upon the framework for a call to action to enhance public awareness about the personal and societal burdens imposed by PH, and to improve the care of persons living with the disease.
The PHA Europe Call to action was presented at the European Parliament on June 6 2012. The launch event was a resounding success. MEP Karin Kadenbach served as host, with support from MEP Hannes Swoboda. Speakers included Roundtable members Gerald Fischer (PHA Europe President), Pisana Ferrari (PHA Europe Vice President), Nazzareno Galiè (University of Bologna), Simon Gibbs (Imperial College, UK), and Jean-Luc Vachiéry (Erasme, ULB, Belgium). Paola Testori Coggi, Director General of DG SANCO (Health and Consumers), addressed assembled guests about EU action in cardiovascular disease and pulmonary illness and Laurent Nicod, Scientific Committee Chair at the European Respiratory Society, lent his support to our initiative. Guests included Members of European Parliament and representatives from DG Research, DG SANCO, the European Patients’ Forum, and the Standing Committee of European Doctors, among others. There is no doubt that we have taken a giant step forward for persons living with PH on 6 June. Our success would not have been possible without the ongoing guidance and support of all our Roundtable members over these past nine months. Our challenge moving forward will be to secure organisational endorsements for our Call to Action, and to disseminate to as wide an audience as possible our key messages: to improve access to expert care, improve awareness and screening, encourage clinical research and innovation, empower patient groups, and assure availability of psychosocial support.
European Respiratory Society endorsement of the Call to Action
“The ERS is pleased to join with PHA Europe and its 27 national affiliates in calling for improved access to expert care in pulmonary hypertension, greater awareness and screening, ongoing clinical research and innovation, empowerment of PH patient groups, and increased psychosocial support for PH patients and carers. We applaud PHA Europe for taking up this call on behalf of persons living with PH across Europe, and we encourage the dissemination and uptake of the messages in the PHA Europe Policy Brief, Addressing the Unmet Needs of Persons Living with Pulmonary Hypertension.”