EZINE ARCHIVE
Season's greetings and welcome to our last issue of 2010
EFA News: Council of the European Union agrees that information on essential allergens must also be availablefor non-prepacked foods
On the 7th of December, the Council of the European Union (which represents the governments of the EU’s 27 Member States) reached a political agreement on the draftFood Information to Consumers Regulation.This draft was first issued by the European Commission in 2008, and has since then been under discussion in the European Parliament and Council, following the standard procedure for law-making at EU level. A controversial vote was held in Parliament on the issue in June 2010. This resulted in many amendmentsto the original draft, including the rejection of a system of ‘traffic light’ labelling to alert consumers to health hazards and benefits of food products.
The original also attempted to set clearer rules on the labelling of allergens in food products, and EFA and many members spearheaded by our Food Allergy Working Group campaigned vigorously during the parliamentary vote to have this happen. Precautionary labelling and phrases on packages such as ‘may contain’ do little to alert allergen sufferers of the real contents of a product, and lack of information on non-prepacked foods (i.e. foods served in restaurants and prepared on the spot) is one of the leading causes of severe allergenic reactions in people. While the Parliament agreed that allergen information in pre-packed food must be available, they rejected the amendment proposed by the Green group to set up guidelines for allergen management as a first step for rules for precautionary labelling. EFA welcomes the Council's opinion that providing allergen information on non-prepacked food should be ‘mandatory’, but objects to their proposal for minimum font size of 1,2 mm for labelling, compared to the Commission proposal of 3mm and Parliament’s to consult stakeholders on the minimum size needed. Because the opinions of the Parliament and Council differ considerably on certain issues, the Regulation will very likely now undergo a second vote in the Parliament. This is expected to take place in March or April 2011.
A final agreement may still be quite some time off however, owing to the controversial nature of the legislation, and the differing opinions of the EU bodies. EFA intends to keep working so that people with food allergy may benefit from clearer rules and access to information that they should be entitled to in order to manage their condition.
Susanna Palkonen and Patricia Murray
If any EFA members are interested in joining our Food Allergy Working Group, please contact info@efanet.org
EFA News: Global Allergy and Asthma Platform gets organised
The 3rd meeting of the GA²P², the Global Allergy and Asthma Patient Platform, a project initiated by EFA, will be held on the 11th of June 2011 at the Intercontinental (Ceylan Istanbul) Hotel in Istanbul, Turkey (16.00-18.00). The meeting will tie in with the first day of the Congress of the European Academy of Allergology and Clinical Immunology (EAACI) being held there. During the meeting, elections to the GA²P² board will be held. Signatories of the GA²P² Buenos Aires Declaration are therefore invited to nominate candidates for election before the 10th of May 2011, as well as points to be included in the agenda.
The GA²P² Buenos Aires Declaration has been signed by asthma and allergy patient groups from around the world since December 2009. Its five main points centre on the need for global networking of asthma and allergy patient organisations; the right for asthma and allergy patients to comprehensive healthcare; their right to have access to education including information, training and self-management; their right to live in healthy, unpolluted air and smoke-free environments; and their responsibility to lead and be empowered to lead healthy lifestyles and manage their disease.
EFA GA²P² Coordinator: Antje Fink-Wagner, EFA Fundraising and Project Officer: antje.finkwagner@efanet.org
EFA News: EFA at 'A European Strategy for Chronic Conditions' workshop by EPPOSI
The European Platform for Patients’ Organisations, Science and Industry workshop 9th December, of which EFA was one of the supporting organisations, examined the elements of a holistic strategy on chronic diseases including patient empowerment, inclusion and wellbeing in workplaces – focusing on what you can do and not what you cannot do, prevention and technologies as an enabler. Susanna Palkonen from EFA chaired the session on the Practical challenges about chronic disease management. EPPOSI is not‐for‐profit, partnership-based multi‐stakeholder think tank based in Brussels who aims through capacity building and exchange of knowledge. Pre-conference paper and press release
EFA News:Impressions on the Patients' and Consumers' Working Party (PCWP) and training organised by the European Medicines Agency
EFA board member Per-Åke Wecksell attended a training session at EMA headquarters, together with 30 other participants from different patient and consumers organisations. The aim of the training was to provide an overview of the work that EMA is doing, in particular regarding the Patients’ and Consumers’ Working Party, and train patient experts in reviewing package leaflets in medicines and other EMA information on medicines targeted to the public.
The session provided a very good insight into EMA’s work, and the steps that are necessary to allow new medicines to be released on the market. More information on this can be found on the EMA homepage, and anyone in a position to attend a future EMA workshop on this topic is highly recommended to do so!The European Medicines Agency is a decentralised agency of the European Union, located in London. The Agency is responsible for the scientific evaluation of medicines developed by pharmaceutical companies for use in the European Union. Under the centralised procedure, companies submit a single marketing-authorisation application to the Agency. Once granted by the European Commission, a centralised (or ‘Community’) marketing authorisation is valid throughout the European Union (EU) and EEA-EFTA states (Iceland, Liechtenstein and Norway). The Agency is involved in the scientific evaluation of the hundreds of medicines that fall within the scope of the centralized procedure.
Member News: Prevention des Allergies Belgium organises a dinner without the notorious 14 allergens
FPA (Prévention des Allergies Belgium) once again organised a symposium on food allergy for food caterers and catering students in a school in Brussels this October. The well-known chef Yves Mattagne from the Sea Grill Restaurant showed students how to prepare and serve a meal that does not contain any of the 14 allergens from the EU list of allergens that always have to be labeled. The result was a delicious dinner safe and free from allergens for all involved!
Member News: Asthma Society of Ireland rewards making a difference for people with asthma
On the 29th of November, the Asthma Society of Ireland awarded Nurse Mary Hughes from County Cork in Ireland the esteemed annual Órán Ó Muiré Bursary Award. The focus of the 2010 awards was to support a new nurse-led research project, which, when implemented, will improve the quality of care delivered to people with asthma and/or their families.
The wining submittal, entitled “Adolescent Asthma Symptom Control; A Grounded Theory”, aims to develop a deeper understanding of how asthma effects adolescents, leading to improved future treatment guidelines.
Member News: Asthma Society of Ireland launches 'control asthma at Christmas' guidance
The Asthma Society of Ireland is alerting people with asthma, especially children, to take special care to avoid asthma triggers this Christmas and winter period. Hidden asthma triggers at Christmas and the severe weather conditions may negatively affect children and adults with asthma.The “control asthma at Christmas” awareness campaign is supported by former Miss Ireland and Irish Novelist Amanda Brunker, whose son suffers from asthma.
Members News: Astma Fonds launches national COPD risk test
The Netherlands is estimated to have 300,000 people with undiagnosed COPD. Astma Fondsthe Netherlands Asthma Foundation, has launched a COPD risk test in order to identify these sufferers.
Based on a list of criteria set out by the University of Maastricht, people over 40 with symptoms of coughing, who have smoked or smoke and who are out of breath after climbing a staircase are asked to answer 8 internet-based questions.
While the original target was 80,000 responses, 115,000 people had completed the questionnaire after 4 weeks of tests. A larger proportion than expected showed a high risk of having COPD. The results are currently being analysed. The test was promoted in conjunction with primary care doctors, and the project will run for 3 years.EU News: Patients' rights in EU cross-border healthcare
Following the adoption of the Council’s first-reading opinion on the draft Directive on Patients’ Rights in Cross-Border Healthcare in Europe, and before the second-reading process begins in Parliament in the 2011, the European Patients’ Forum, EPF, held a roundtable in Brussels to discuss what is at stake in the Directive from the point of view of different stakeholders, in particular for patients. The Roundtable was made up of representatives from the Belgian Presidency, MEPs who have been instrumental in the first-reading process in Parliament, Commission representatives, as well as doctor, pharmaceutical, hospital, industry and EU Member State representatives.
The potential for positive change that the draft Directive – which aims to reimburse patients who travel to Member States other than their own for medical care, foster co-operation in the EU on healthcare, promote equality of treatment and increase EU standards of quality and safety – presents was highlighted by all speakers. Concerns, however, centred on the practical implications of implementation, and how patients would be affected. The issue of payments for cross-border care emerged as a central, with patient groups concerned that no system would be put in place to avoid patients being forced to make upfront payments for treatment before reimbursement. The need for patients to be adequately informed in their Member State of origin before making a decision to go abroad was also stressed, and the establishment of national points of information was called for. Clearer common standards of quality and safety would need to be defined, and a mechanism for implementing them developed. More consideration of the implications for patients with rare diseases is needed, and participants agreed that eHealth needs to be promoted, despite opposition to this on the part of some Member States.
There was broad consensus that the Directive is a positive step for patient rights on the whole, and although areas of concern remain, it was recognised as a first step on the road to a more comprehensive and understandable framework. Commissioner for Health and Consumers John Dalli closed the event by reiterating his belief that the Directive will serve to increase the quality of patient care in Europe, and will cause governments to invest more directly in health. Report
EU News: Council conclusions on chronic diseases
On the 7th of December, the Employment, Social Policy, Health and Consumer Affairs Council of the Council of the European Union adopted conclusions on “Innovative approaches for chronic diseases in public health and healthcare systems”. The conclusions – which are policy statements that are non-binding but which enable and legitimize common measures to be taken by one or more or all 27 EU Members States – followed a Ministerial level conference held in Brussels on the 20th of October. Chronic diseases are by far the leading cause of mortality in the world - representing 60% of all deaths worldwide - and are likely to increase in the next decade due to the ageing of the European population. The EU Member States and the European Commissionare recommendedto work together to promote healthier choices for citizens, reduce inequalities in care, ensure integrated patient-centred care, and stimulate research into prevention, diagnosis and treatment of chronic disease. They are alsorecommended to exchange good practices in the area of chronic disease policy, and to cooperate with relevant stakeholders, especially patients’ organisations.
The Commission was invited to initiate a reflection process aiming to identify options to optimize the response to chronic diseases in Member States, and to summarize this in a ‘reflection paper’ to be published in 2012. It should also include good practices regarding ways to enable patients with chronic diseases to maximize their autonomy and quality of life. According to the Council, chronic diseases and the findings of the reflection paper should be integrated by the Commission as a priority in current and future European research and action programmes in the implementation of the EU 2020 initiative, which we wrote about in our April 2010 eZine.
EFA welcomes the increasing collaboration at EU level on care, prevention and focus on patients, and continues to be a strong voice for people with allergy, asthma and COPD through our projects and policy work.
EU News: Belgian Presidency event on 21st Century Healthcare for Europe
On the 3rd of December, the Belgian Presidency of the EU, along with EFPIA (the European Federation of Pharmaceutical Industries and Associations) and HST (the Health Science and Technology Group), held a day-long event on 21st Century Healthcare for Europe. The event examined two main themes: reducing inequalities and fostering innovation in EU healthcare. The fact that health inequalities amongst Member States are increasing instead of declining dominated the debate, and different methods of addressing this were discussed. All agreed that healthcare must become a key investment for society - not only despite but because of the current economic crisis, as investment in health is also investment in a more sustainable future.
Education, health literacy, the importance of prevention, giving a stronger voice to patients and the creation of new technologies were all singled out as fundamental to this. Innovation must therefore play a central role in European Healthcare systems, and as it too plays an important role in the fight against inequality. Speakers highlighted the need for strong encouragement of the innovation sector, the promotion of more Public-Private Partnerships and the redirection of funding to promote R&D and innovative research initiatives in Europe. Patricia Murray from the EFA Office represented EFA at this event.
EU News: Debate on smoking cessation at the European Parliament
On the 29th of November, Irish MEP Marian Harkin hosted a dinner debate in the European Parliament entitled ‘Quitting: the way forward’, to discuss how best to motivate and support smokers to quit. It was agreed that reducing the prevalence of smoking through prevention of uptake and increase of quitting is the only truly effective way to stop tobacco-related deaths in the coming decades form rising. What the most effective cessation programmes consist of and what the best practices for preventing and treating tobacco dependence were all discussed, with general agreement that greater emphasis needs to be placed on this as a political health priority in the future.
EFA was represented at the event by Patricia Murray, and agrees with the conclusions; there are millions of people at risk of COPD in Europe not to mention the hazards of smoking and exposure for people with asthma and allergy. Report
EFA in the Media: Interview with EFA President Marianella Salapatas
Following her presentation at the event'COPD -Why is it such a silent killer?organised by the Representation of the European Parliament in Scotland, EFA President Marianella Salapatas was interviewed about EFA’s work on COPD. The interview is available here.
Further resources: A presentation given at theevent on ‘COPD Uncovered: The changing face of COPD’ by Monica Fletcher, Chair of the European Lung Foundation, can be viewed here.