The European Network for Smoking and Tobacco Prevention (ENSP) organised its first annual network meeting and general assembly on May 21st-23rd in Bucharest, Romania. EFA is an associated member of ENSP and was represented by EU Policy Advisor Roberta Savli.
During the meeting, participants presented the best practices of tobacco control throughout Europe and an interesting session on the implementation of the recently entered into force tobacco control directive. EFA was part of a stakeholders’ panel that discussed the implementation of article 20 of the new Tobacco Products Directive on electronic cigarettes. As a follow-up, a guidance could be developed for members to use it in their advocacy efforts at national level to ensure that the rights of patients with asthma, allergy and COPD are taken into account by the national authorities while implementing the directive. A video of the meeting can be found here.
A joint ENSP and European Heart Network (EHN) event was hosted on May 22nd in the Romanian Parliament on the way forward for tobacco control policies in Europe. European Patients’ Forum’s Annual General Meeting The European Patients’ Forum (EPF) annual general meeting took place on May 12th and 13th in Brussels. EFA was represented by our Director Susanna Palkonen and, during the first day, by EU Policy Advisor Roberta Savli. In the afternoon of May 12th, three EPF working groups took place. Susanna participated in the Youth working group, while Roberta was an active member of the first meeting of the working group on Patients’ empowerment, which will become a new temporary EPF working group together with the one on Access. At the AGM Susanna was re-elected as EPF vice president. Innovative Medicines Initiative (IMI) Stakeholder Forum On 21st of May, EFA was present at the IMI Stakeholder Forum in Brussels, where the Innovative Medicines Initiative presented its latest results, future activities and plans. During the morning session several speakers elaborated on the current breakthroughs in stem cell research, more specifically induced pluripotent stem cells (iPScells). They emphasized the aim of medical research to step away from the use of a “one size fits all” approach - where everyone receives the same type of medication for a certain disease, based on statistics- and to move towards a more individualized approach. Participants agreed that sharing research information via partnerships is key to increase efficiency and effectiveness in research and development. By bringing together research data, techniques and tools from diverse sources, it is hoped that new and more therapeutic opportunities and clinical strategies will be developed in a shorter time span. The afternoon session focused on the future of IMI, by presenting their new phase ‘IMI 2’. Following the speeches of representatives from both the European Commission and the European Federation of Pharmaceutical Industries and Associations (EFPIA), an open debate was set up with key IMI stakeholders. Two clear messages were emphasized during the afternoon session. The first concerned the cooperation between the public and the private sector, since this was considered the only way to move forward. A second message was the need to improve the involvement of patients in research, by increasing their role in the process. This shift towards a more patient-responsive approach, can already be found in IMI2’s strategic research agenda; “the right prevention and treatment for the right patient at the right time.” Committee of Regions stakeholder/expert consultation on air quality EFA was invited to present patients’ views in a stakeholder/expert consultation organised by Mr Cor Lamers (representative of the European People Party for the Netherlands and rapporteur of the opinion on the air quality package in the Committee of Regions), on May 8th. As part of the Commission for the Environment, Climate Change and Energy, Mr Lamers is currently preparing an opinion on last December Commission’s proposal for the Clean Air Package for Europe. During the meeting, he asked several stakeholders about their views on various aspects of the national emissions ceiling and medium combustion plants directives. EFA’s EU Policy Advisor Roberta Savli took part in the meeting and, after consultation with members, provided written comments. The draft of the opinion can be found here. We will continue to provide opportunities for our members to be consulted and involved in the forthcoming decision-making process. ESO Masterclass in Cancer Patients’ Advocacy Sustainability of patient groups is especially threatened in times of austerity, but at the same time they are even more important to patients and their rights. EFA’s Susanna Palkonen, in her role as vice president of EPF spoke on this very topic at the European Society of Oncology Masterclass on Cancer Patient Advocacy to European level cancer patient leaders, 23-25 May in Italy. ‘I am impressed how diverse, rich and committed the cancer patient community is, and learned a lot from fellow advocates’, she said. Her presentation is available here. Patients-MedTech dialogue On May 26th, the European Patients’ Forum (EPF) and MedTech Europe organised a face-to-face meeting in order to further develop the patient-centric “check-list” and the concept of the Patient-MedTech Forum workshop that has been confirmed for October 16th 2014. Pharmaceutical industry transparency event in Brussels The European Federation of Pharmaceutical Industries and Associations (EFPIA) organized an event to present a public information campaign on the new disclosure rules for certain financial and other transfers of value with healthcare professionals and other organisations. Specialists from pharmaceutical associations from United Kingdom, Netherlands and Poland presented the platforms launched in their countries to establish a more transparent collaboration between specialist healthcare professionals and pharmaceutical companies. Such platforms are accessible online and disclose today those economic transfers that have received consent from both pharmaceutical industries and healthcare professionals. EFA’s Susanna Palkonen, and EFA Communication Officer, Isabel Proaño, participated in the event to share the patient’s experience establishing transparency mechanisms around the support received from pharmaceutical companies. EFA welcomed the initiative taken by pharmaceutical companies.