Tackling socio-economic inequalities in smoking EFA EU Policy Officer Roberta Savli participated in the workshop organised in Athens by our partner organisation European Network for Tobacco Control and Smoking Prevention (ENSP) on the SILNE project - Tackling socio-economic inequalities in smoking. As a member of SILNE Advisory Board, EFA gave recommendations regarding mid-term results of this three-year EU funded project, its content and work packages’ timelines, taking into account patients’ perspective. The project links the fight against health inequalities in the EU with the strategy to limit tobacco initiation and consumption. The main tobacco control measures are analysed and their equity is studied with the objective to propose policy recommendations for policy makers to reduce tobacco use and at the same time promote equity. More information on the project can be found here. EURORDIS Summer School for Patients Advocates EURORDIS, the European umbrella organisation representing rare diseases, organised its sixth summer school for patients’ advocates in Barcelona from June 17 to June 21 2013. EFA EU Policy Officer Roberta Savli was selected to take part in the programme that focused on drugs development this year. The first two days of the summer school were devoted to clinical trials, with special attention paid to ethics and informed consent of patients. The second part of the programme was dedicated to the regulatory environment at the European Medicines Agency (EMA). Speakers presented the main committees involved in the process of market authorisation at EMA, underlining patients’ presence and how patients and patients’ representatives can be more actively involved in all decisions concerning drugs development. The programme can be found here as well as other information on previous events. EFA at the discussion on clean solutions for clean cities in Europe What are the best solutions for clean cities in Europe? That was the main question of a lunch debate organised at the European parliament by MEP Peter Liese. At the event attended by EFA EU Policy and Programme Assistant Tereza Reznakova, representatives of the European Commission, transport companies and SME's presented their ideas on how to get rid of pollution in European cities with special focus on public transport. As Thomas Verheye from DG Environment pointed out, the main objective for the EC is to lower the air pollution first and then try to meet the WHO guidelines. As the Commission is trying to reach levels of air quality that wouldn't cause health problems to EU citizens, first and foremost they have to deal with non-compliance problems in many EU member states. The discussion then focused on public transport and ways how to reduce emissions from buses. As Mike Himmen from ERECA, an organisation representing three SME's (DINEX, AMINOX and HJS) developing retrofit technologies in Europe, said: “We need public transport, but we also need clean public transport”. According to him, the best solution is to introduce retrofit of public buses as this technology can substantially reduce PM and NOx emissions without a fuel penalty. Since there are more than 340,000 buses without any filter in Europe and more than 250,000 without a NOx trap, buses’ emissions have become a pressing issue. At the event, representatives from three European cities (London, Berlin and Madrid) presented their strategies to tackle air pollution. In London the congestion area was introduced in 2003 and emission has been decreased by 16%. In Berlin, the BVG company successfully retrofitted buses in 2002 and introduced a low emission zone in the city centre. In Madrid similar steps have been taken to fight against air pollution. Health Inequalities in the New EU Member States and Candidate Countries Access to quality healthcare differs significantly across Europe. Especially for patients coming from the new EU member states it is often difficult to get access to quality care, new medicines and appropriate treatment. Equity of access to quality healthcare was the main topic of a conference organised by the MEP Andrey Kovatchev and European Patients’ Forum (EPF) at the European Parliament. Doctor Stanimir Hasardzhiev introduced his research on healthcare inequalities and Emily Peasgood from INCITE showed results of survey amongst patients’ organisations on the topic of access to healthcare. 286 patients with chronic conditions from 15 countries took part in the survey, including some EFA members. According to their answers, access to quality healthcare is perceived as a big problem in the new Member States and many patients have been negatively affected by the economic crisis as waiting time for treatment has worsened. Access and quality are the main issues which need to be addressed. Achim Kautz from ELPA gave a concrete example of hepatitis and Erik Briers demonstrated the problem in the case of cancer patients. According to Dessislava Dimitrova from the Regional Committee of the WHO, access to healthcare has to be precisely defined and concrete steps subsequently taken. Slovenian MEP Alojz Peterle stressed the importance of sharing knowledge among member states, experts and healthcare professional in order not to spend money effectively. Bulgarian MEP Antonya Parvanova then suggested ambitious solution to tackle the problem – according to her the only way how to effectively deal with inequalities is to change the treaty and transfer the powers regarding health and healthcare system from EU member states to the European Union. MEPs want to form a pressure group that would directly address the issue and intensively advocate for equal access to healthcare across Europe. EFA presented on Allergen and Intolerance Labelling EFA Executive Officer Susanna Palkonen presented at the FIC and Food labelling conference held in June in Brussels. The event focused on the challenges of implementation of Food Information to Consumers (FIC) Regulation and gave an opportunity to stakeholders, NGOs and member states to share their experience and voice their opinion. In her presentation, Palkonen pointed out that up to 25% of European population reacts to food and about 17 million Europeans suffer from food allergies, with 3.5 million of them less than 25 years of age. The problem, however, remains underestimated. Before the adoption of the regulation EFA was advocating for labelling for pre-packed and non-prepacked food to be clear and visible, may contain labelling used only when unavoidable and safety chain for people with food allergies including a complete and accurate ingredients list available. Main issues for allergic people such as availability, readability of information or cross-contamination were pointed out. Palkonen presented on best practices around the world, across Europe and also from EFA members. More information here. EFA attends the Patients-MedTech Dialogue EFA Membership and Programme Officer, David Brennan, was present for the 5th Patients – MedTech Dialogue meeting in Brussels on June 5th. Eucomed CEO Serge Bernascoini and European Patients’ Forum (EPF) Director Nicola Bedlington chaired discussions. The group reviewed the initiative’s Memorandum of Understanding and Terms of Reference completed by a working group of patient and industry representatives, which are unique documents demonstrating increasing cooperation and dialogue between industry and patients concerning medical devices. Also of interest were discussions highlighting how industry can bring patients ‘to the centre’ of its work and possible strategies for achieving this, which was outlined in Eucomed’s ‘Contract for a Healthy Future.’ As a product of an environment of crisis, it refocuses upon value-based assessments by looking at health needs of patients and improving information and knowledge sharing between all stakeholders. Industry partners agreed widely such a change could only come from the top of the organisations from executives and boards invested in developing businesses differently to incorporate ‘patient involvement.’ In a group exercise, patients and industry representatives shared their vision of a ‘patient-centred’ company. Measurement of patient activeness in consultations, the presence of a patient advisory board, clearly defined roles for patients, including patients beyond focus groups, and a measurement of patient needs prior to product development were among many other ideas articulated by participants. The meeting concluded with a review of the EU Medical Devices legislation. Eucomed also confirmed the MedTech Forum for 2013 would take place from the 9th – 11th of October in Belgium, with a session fully dedicated to patients on October 10th from 17h30 – 18h30 during the plenary session focusing on promoting patient-industry cooperation. The decision will include a moderator, two patients, a MedTech company offering a best practice model and a last participant to be confirmed. More information here. EFA at the European Medicines Agency Patient and Consumer Working Party In June EFA Board Member Lina Buzermaniene took part in two meetings organised by the European Medicines Agency (EMA). The Joint meeting of Patients/Consumers Working Party (PCWP) and Healthcare Professionals Working Party (HCPWP) was focused on medicines supply shortages. This problem has an impact on all classes of medicines from complex chemotherapy agents and anaesthetics to diabetes, hypertension, and asthma medication. Participants of the meeting expressed their views and proposals how to deal with the problem. Patients' representatives stressed the need of patients and health care professional to be part of the decision-making process, not only the communication process, need of transparency and supply management measures. All stakeholders will now work on common position and recommendations to European Commission and member states. EMA also presented new telematics governance structure which provides a framework to foster collaboration across the European medicines network and to maximize efficiency in communication. It is also connected to restructuring of EMA in order to be more efficient. On the following day EFA attended the Patients/Consumers Working Party (PCWP) meeting where herbal medicines were in the spotlight. After patients' and consumers' advice, EMA agreed that there is a need for more information on herbal medicines adapted to the general public. EMA will now start preparing herbal summaries for the general public. Proposal on publishing information on clinical trials results was discussed as well. Information will be published within the European clinical trials register. Currently only protocol related information are published, information on results will be launched at the end of 2013. A small group including patient organisations will be asked to review the proposed display of the results to assess usability. EMA also presented finalised training strategy for patients and consumers. It describes the specific training activities and material that will be made available to patients and consumers when taking part in EMA activities and events. In line with the training strategy, a draft dedicated ‘training webpage’ is currently being developed. More information here. IMI Patient Focus Meeting in Brussels EFA President Breda Flood attended the IMI Patient Focus Meeting in Brussels devoted to patients' involvement in current research projects, sharing best practices and further improvement of healthcare. It was the first IMI meeting dedicated to patients and several patient speakers representing Alzheimer’s disease, schizophrenia, autism, cancer, respiratory diseases, and rheumatoid arthritis shared their own experiences and expectations for research. Val Hudson from the Patient Input Platform of the U-BIOPRED project in which EFA also partners spoke about her experience from patient's perspective. Pim de Boer (Lung Foundation Netherlands) presented on general aspects of patient involvement and scientific view. According to both of them, we have learned what patients' involvement means, now we have to develop and improve communication methods and definition of patients' roles in research from the beginning. The two most important outcomes of the meeting were: 1. IMI will focus on building on trust, partnership, innovation and novelty; 2. patients should have more input into the call selection for IMI which means that academia and pharmaceutical industry have a duty to respond to needs of patients. You can read the whole summary of the meeting here. UEMS meeting: Allergology in the spotlight EFA president Beda Flood attended the UEMS meeting on Allergology at the EAACI-WAO Congress in Milan. It was an opportunity for EFA to present the joint Allergy Alert Paper prepared in collaboration with ARIA, EAACI and UEMS. Flood pointed out the lack of allergy training for doctors in many European countries and underlined the difficulties met in countries which do not recognise Allergology as a speciality. At the meeting, the issue of working with Paediatrics allergist and Allergology education and treatment in general were also discussed. Meeting of the Global Allergy and Asthma Network of Excellence (GA²LEN) EFA’s Susanna Palkonen attended the AGM of the GA²LEN, which has developed into large and unique network of clinical centres where new innovations and solutions to treat allergy can be developed, tested and trialled. For example, currently the network is testing mobile pollen chamber, which may enable measuring exposure to pollen in a standardised way across Europe and help mimicking exposure in outdoor conditions and thereby better studies in respiratory allergies. New EAACI Executive Committee was elected which will prepare proposal for developing GA²LEN structure. Allergic Rhinitis and its Impact on Asthma (ARIA) advisory meeting Susanna Palkonen represented patients in the ARIA guidelines meeting – key guidelines considering EFA’s Allergy Project. ARIA, spearheaded by Prof. Jean Bousquet has linked up the EC supported project DECIDE ‘Developing and Evaluating Communication Strategies to Support Informed Decisions and Practice Based on Evidence’. This collaboration will enable more and better communication on the guidelines that is more relevant to users, such as primary care and patients, including interactive summaries and graphical presentation. It will also help in balancing the benefits and risks of different treatment choices more clearly. ARIA guidelines will also be updated more pragmatically in the future, whilst maintaining the high level of evidence base. It was clear in the meeting that the large pool of experts from around the world composing ARIA advisory committee will want to continue to be closely involved.
ERS Summit focused on lung health research
THE ERS Presidential summit was held in Dublin in June 2013. At the event dedicated to “Research gaps, patient needs and innovative solutions: a forward look on lung health research” EFA was represented by our president Breda Flood. Speakers addressed aspects of identifying and reducing risk factors linking communicable and non-communicable respiratory diseases, policies for lung health and research, gaps and needs in patient-focused research and more. More information here.