Impact of the economic crisis on EU citizens’ access to medicines Can EU citizens afford their medicines? That was the main topic of a full-day event organised by the European Public Health Alliance (EPHA) at the European Parliament on May 16. The conference hosted by MEP Alejandro Cercas “Can EU citizens afford their medicines? The economic crisis and access to medicines in Europe” attracted several stakeholders, policy-makers and patients’ organisations including EFA represented by EU Policy Officer Roberta Savli. Access to medicines is fundamental for patients both in terms of affordability and availability and all patients in Europe should have access to the same medicines. In times of economic crisis, however, these two elements are hindered as the budget spent on health decreases. Several options on how to overcome these problems have been presented including new evidence-based systems of deciding on reimbursement and access, such as health technology assessment (HTA). More information here. Improving care for COPD patients After the ERS European COPD Audit found out that the quality of care delivered to patients in Europe varies unacceptably between and within Member States, a joint conference was organised by the European Respiratory Society and the British Thoracic Society on “Improving hospital care of COPD patients: designing European COPD care bundles” on May 9 in London. With the objective of identifying ways to improve care for COPD patients, core European admission and discharge care bundles were identified. Stakeholders’ collaboration was found extremely useful and patients’ voice was heard by healthcare professionals. They were mainly advocating for lung sports and self-helping-groups to be inserted in the discharge bundle. EFA was represented by the President Breda Flood, COPD Working Group Chair Michael Wilken and EU Policy Officer Roberta Savli. Roadmap for systems medicine for Europe The CaSYM project, funded by the EU 7th Framework Programme for Research, held their stakeholder conference developing roadmap for systems medicine 14-15 May in St Andrews University, Scotland. Susanna Palkonen took part in the working group on public health, which concluded that it would be useful if the ‘systems medicine’ approach – comprehensive and multidisciplinary – would be developed and used for public health issues, especially prevention compiled with participation of patients and citizens. The presentations from the meeting are available here and EFA looks forward patient centred road map for systems medicine. Effects of poor indoor air quality on our health In May the European Ventilation Industry Association (EVIA) held their annual general meeting and EFA was invited to speak at the event on the link between indoor air quality, health and ventilation. EU Policy Officer Roberta Savli presented EFA’s advocacy activities in the field of indoor air quality and the reasons why this topic is of crucial importance for people that already suffer from allergy or respiratory diseases. Recommendations for future policy developments from patients’ perspective, both at the national and the EU level, were presented. The presentation is available here. IMI Stakeholder Forum 2013 in Brussels It is thanks to patients that our research can move forward. This is one of the conclusions drawn from the IMI Stakeholder Forum 2013 which took place in May in Brussels. EFA, represented by EU Policy and Programme Assistant Tereza Reznakova, attended the event together with other 250 professionals working in the field of health policy, medicines research and patients’ rights advocacy. As May 2013 was declared the Month of the Brain by the European Commission, the meeting was dedicated to brain research and IMI’s place in the European Research Area. At the vent, the MEP Françoise Grossetête spoke about the European Parliament’s view of the innovation in medicines research and Director-General for Research and Innovation Robert-Jan Smits gave a presentation on the Commission’s position and involvement in development of new medicines. A need for cooperation between different disciplines and more extensive involvement of patients was highlighted by most of the speakers. It was declared that SMEs and universities will become more involved in the innovative research in the future. The event closed with a keynote speech by Nobel Laureate Rolf Zinkernagel who focused on immunology research and spoke on vaccination and future developments in this area. More information can be found here. To watch the entire conference on-line, follow this link. Patients’ Involvement in Health Policies in Europe On the 7th European Patients’ Rights Day EFA, represented by EU Policy and Programme Assistant Tereza Reznakova, attended the “European Citizens’ Rights: Patients’ Involvement and Cross Border Care” conference in Brussels. The event organised by the Active Citizenship Network was focused on the Directive on Patients’ Rights in Cross Border Care and its implementation in the national in all Member States. The conference aimed at supporting civic organisation to actively take part in the transposition of the Directive into national systems of all Member states. Speakers shared their experience and best practices regarding the involvement of patients’ and civic organisation in the whole process. The MEP Antonyia Parvanova gave an overview of the Directive and promised to work on a new legal text which will further strengthen patients’ rights not included in this Directive. “We have to be ambitious. We have to ensure patients’ access to good quality care and tackle inequalities between Member states,” the MEP declared. Director General of DG Health and Consumers Paola Testori-Coggi then highlighted benefits the EU brings to patients. Representatives from different European countries shared their experience on patients’ organisations involvement in the transposition of the new Directive in the legal framework of individual Member states. As result, it was noted that the situation in the EU varies significantly and the problem of so-called health tourism was brought up to discussion as well. The role of patients was also discussed at the conference. Participants of the panel discussion pointed out that patients should be involved from the beginning, it is not enough to add the patients at the end of the whole process. The conference was also an occasion to present the report “The Patients’ involvement in health policies in Europe” prepared by Cittadinanzattiva. To learn more, check this website. EFA attended a conference on malnutrition as a critical health priority EFA Executive Officer Susanna Palkonen took part in the “Effective healthcare requires good nutritional care” conference focused on the problem of malnutrition in older people and patients suffering from chronic diseases. The aim of the event organised by several patients’ organisations was to alert European governments to take action to secure good nutritional care to prevent unnecessary health complications. At the conference a call to action entitled “Every Patient Deserves Good Nutritional Care” was launched. The document asks implementation of the following actions: raising public awareness and education, introduction of mandatory screenings for patients admitted to hospitals, setting national nutritional quality standards and introduction of mandatory nutritional training for all healthcare professionals. Patients’ participation was also highlighted at the event, and EPF and EGAN presented a booklet “Patients’ Perspective on Nutrition”. “In this booklet the collective experience of patient experts and nutritional scientists is shared. And so, it will contribute towards better healthcare and quality of life for Europe's patients,” Nicola Bedlington from EPF said. The problem of malnutrition is crucial also for patients EFA represents. People suffering from COPD are at a risk of frailty and need nutritious food. Patients having a food allergy may have hard time getting the nutrients they need because of restrictions in their diet. More information here. EPF’s AGM highlighted the role of patients’ representatives In May EFA’s Susanna Palkonen, Vice President of EPF, also attended the Annual General Meeting of the European Patients' Forum (EPF) in Dublin. EPF celebrated there its 10th anniversary with a special quest - Commissioner for Health & Consumers Tonio Borg. In his speech, Commissioner praised patient organisations’ work in Europe: "In 10 years patients organisations have played a critical and valuable role in advocating for patients' rights," Borg said. He also added that patients have a critical role in advising policymakers, because healthcare systems are here for patients and not the other way around. In order to ensure the best possible care for patients all across Europe, it is necessary to promote proper education for all healthcare professionals. EFA has been advocating for Allerogology education together with UEMS, EAACI and ARIA and in May published an Allergy alert paper requesting endorsement of changes to healthcare systems in Europe in order to secure the best possible care for patients suffering from allergy. To learn more, check this website. FA attends Advisory Board Meetings EFA Membership and Programme Officer, David Brennan, was invited to Mainz, Germany by Boehringer Ingelheim to participate in a Patient Advisory Board Meeting on asthma along with other patient representatives from asthma associations around the world. Discussion topics revolved around:
- current issues around asthma control among patients,
- information sources and communication to patients,
- language used in patient communications.
Patient representatives admitted asthma could be described as a relatively ‘boring’ or ‘ordinary’ disease because consequences of being asthmatic are not necessarily considered ‘serious’ or ‘life threatening’ as in the case of other chronic diseases. Indeed, famous celebrities are often reluctant to admit they have asthma or act as a spokesperson for it as they may believe it would be a sign of weakness. Discussions addressed what needs to occur in order for asthma to be taken seriously, especially since it affects patients very differently in severity and evolution as a disease over time. In discussing how information to patients can be improved, wide agreement persisted in strengthening the role of patient organisations as a middle ground for channelling correct information to patients. The patient association exists in a middle ground, where patients may be more likely to trust information they read as many employees and volunteers of patient associations are, or are closer to, the patients themselves. Green Week conference 2013 will be devoted to AIR QUALITY The 13th edition of Green Week, the biggest annual conference on European environment policy, will take place in Brussels from 4 - 7 June 2013. In the light of the European Year of Air the event will be devoted to AIR QUALITY this year. Even though the quality of air has improved significantly over the past few decades, air pollution still poses a risk to our health, triggers respiratory diseases and aggravates asthma and COPD. This is why the conference will be opened with an introductory session on “Cleaner air for all” - dealing with policies for EU and beyond. At the conference, scientific evidence will be given by the WHO, participants will discuss main pollutants, monitoring of pollution, emissions, climate change and air quality and its impacts on European citizens and the environment. This year there will also be a special session devoted to the indoor air pollution. The workshop "There is only one air: better indoor air for better health" organised in cooperation with DG SANCO will concentrate on the quality of air which we breathe inside buildings. At the occasion of the European Year of Air, Joint Research Centre (JRC) will also launch a special website dedicated to indoor air quality. For more information about the conference, click here. EFA in other meetings EFA President also participated in the 3rd Scientific Meeting of our primary care partner, International Primary Care Respiratory Group (IPCRG) focused on the development of care for COPD patients, and our member Swedish Asthma and Allergy Organisations' Congress, both in Uppsala, Sweden.