NEWSLETTER March 2011

Reminder! EFA AGM, Network Meeting and 20th Anniversary celebrations, Paris 6th & 7th May

EFA’s next annual general meeting will take place on the 6th of May in Paris, followed by a networking meeting on the 7th of May. This year's AGM will also mark EFA's 20th year of work. For those members not yet signed up, please contact the EFA office at info@efanet.org. All patient groups who are not yet EFA members can attend as observers. At the AGM a new president and two board members will be elected, a new membership fee structure discussed, and EFA projects scrutinised in terms of their potential benefit for members. The networking meeting is an opportunity to share ideas and projects, in particular on social media and working groups on specific diseases, and to give input on EFA’s work.
AGM documents are available at the EFA website members only section.
For reimbursement, accommodation and registration see: here

EFA News: EFA speaks at IMI Press Conference in Brussels

On the 8th of March 2011 EFA Board Member Breda Flood spoke at a press conference organised by the Innovative Medicines Initiative (IMI) in Brussels. IMI, a joint undertaking of the European Commission and the European Federation of Pharmaceutical Industries and Associations (EFPIA), is Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients by supporting many different European health research projects. At the press conference 8 new projects to be funded by IMI were announced, bringing its total funding to €450 million and its total number of European health projects to 23. Breda was invited to speak about EFA's experience in U-BIOPRED - an IMI-funded project to understand more about severe asthma in which EFA is a partner - and to offer patient perspective in the debate. She outlined the results and achievements of the U-BIOPRED project so far, highlighting EFA's work and expectations for the project and emphasising the valuable contribution of members of the Patient Input Platform to U-BIOPRED. The event was attended European journalists as well as by various stakeholders in the health field . For more information: IMI press release EFA Presentation BMJ article

EFA News: EFA at ERS Summit on Priorities in Respiratory Medicine

At the beginning of March, Breda Flood and EFA President Marianella Salapatas took part in the European Respiratory Society Summit on Priorities in Respiratory Medicine held in Leuven, Belgium. Marianella spoke on patient organisations' role in advocacy for the future of respiratory medicine. She highlighted EFA's past and future advocacy projects, and the role advocacy has in shaping EU policy and research priorities. Several EFA members took part in the event, and the Netherlands Astmafonds also spoke on the role patients can play. The conclusions of the summit will be added to European Respiratory Roadmap just published by ERS, in which EFA collaborated in a chapter on patient groups. The definitive ‘map’ will be published in advance of the ERS Annual Congress in Amsterdam, and launched at an event to be held at the European Parliament in September. EFA welcomes this initiative from the ERS and looks forward to future collaboration. For more information: EFA presentation at the event

EFA News: EFA comments on draft EMA guidelines on medicinal products and COPD

In March EFA submitted detailed comments to the European Medicines Agency (EMA) on draft guidelines on the clinical investigation of medicinal products in the treatment of COPD. The guidelines have been put together by EMA to provide guidance to those developing new medicines for the treatment of COPD, and include recommendations on assessing drug effectiveness and ensuring patient safety during trials. EFA welcomed the draft guidelines, and in particular their emphasis on 'patient related outcomes', which take patients' experience of medicines into account. EFA's main recommendations were to incorporate further patient involvement (for example in study design), to take into account patient education and to encourage greater patient participation in processes such as these in the future, through the development of accessible information and lay-friendly summaries of guidelines. In this way, patients may be encouraged to share their opinions and experiences in debates on issues that concern them more often. See EFA comments

EFA News: News from the EMA Patients' and Consumers' Working Party meeting

In February, EFA board member Lina Buzermaniene attended the European Medicines Agency's (EMA) Patients' and Consumers' Working Party (PCWP) meeting. Various issues were discussed including strategies to train and encourage greater patient and consumer participation in EMA activities, and the quality of information on medicine package leaflets. Concerning the first, the willingness of patients and consumers to be more involved in discussions on drugs and risk assessment was highlighted, and the need for increased training to facilitate this was evident. The suggestion was made that EMA's visibility and accessibility could be increased through a more lay-friendly website, and through increased communication between EMA and national medicines agencies on the benefits of patient involvement in decision-making processes. Concerning medical package leaflets, the update on the revision of the new package leaflet template, which has been based on 5 years' user testing, was discussed. The new template is believed to be more user-friendly than before, and now includes a section on user benefits and paediatric (children) information.

EFA News: EFA attends the Food Allergy and Anaphylaxis Meeting

In February, EFA President Marianella Salapatas, along with other EFA members, attended meeting which examined the latest research and developments in practice relating to food allergy and anaphylaxis. The summit was organised by the European Academy of Allergy and Clinical Immunology (EAACI) and FAAN (the Food Allergy & Anaphylaxis Network) and took place in Venice. During the meeting, a session for patient organisations on food allergy management from a patient perspective was held, and EFA contributed to a presentation on current food labeling legislation, in which the work of the EFA Food Allergy Working Group was highlighted. The result of the summit was a written declaration to be published in June this year.

EFA News: EAACI Summit Immunotherapy in allergy is 100 years old

In February, Marianella Salapatas was invited as patient representative to the EAACI 2011 summit on allergen immunotherapy in Geneva, which gathered international experts in the field. The current status of different issues regarding immunotherapy was discussed, certainties and controversies were assessed, and niches for further research identified. The result was the “European Declaration on Allergen Immunotherapy”, a robust statement on the use of theraphy, its availability and the need for research on the topic. It will be published and available to the public soon. Source: Victòria Cardona, EAACI Vice-President Communications & Membership

Member News: FEDERASMA issues advice on children with allergies in schools

On 18 February last in the Umberto I° General Hospital in Rome, the sixth “Giornata del Bambino Allergico” (Allergic Kids’ Day) took place, in collaboration with “La Sapienza” University.
This Convention was organized by FEDERASMA, ALAMA (the Asthma and Allergy Patients of Lazio Association - a member of Federasma), and SIAIP (the Italian Society of Paediatric Allergology and Immunology).
During the convention FEDERASMA and SIAIP presented a publication entitled “Advice on Managing Allergic Kids at School”, which was developed jointly by experts of the two organisations.
This is a comprehensive document which deals with diagnosis and certification of food allergy and asthma, and explains how to best to deal with kids at risk of experiencing allergic and asthmatic reactions during school time, taking into consideration existing Italian laws and the responsibility of schools, parents and the Italian Health Service. The document is tailored to allergic and asthmatic kids, and aims to ensure that they can attend school, practice sport and play in safety.

Member News: Swedish Asthma and Allergy Association participates in "Patient Participation in Research" initiative

Between 2008 and 2010, the Swedish Allergy and Asthma Association joined forces with 3 other Swedish patient organisations to promote patient participation and influence in research. The "Patient Participation in Research" project aimed to foster collaboration between patients and researchers in order to give those that are affected by research (i.e. patients) more opportunities to contribute while it is being carried out. The two central aims of the project were to train patients to become 'research partners' capable of participating in the various phases of research processes, and to educate representatives of the respective associations about research practices. Researchers interested in collaborating with one of the trained patient research partners can find more information and contact details here. For more information: Presentation on "Patient Participation in Research"

EU News: EUROPE QUITTING: Progress & Pathways report launched

On the 17th of March Antje Fink Wagner attended the EQUIPP report launch in Berlin. The report is a comprehensive study based on expert research which assesses the current state of smoking cessation infrastructure in 20 European countries. The aim is to provide policy recommendations to ensure support is provided to European smokers who want to quit. According to findings, over 78 million smokers in Europe want to quit, but half of those surveyed believe support to do so is inadequate. Some of the report's main recommendations include increasing tobacco prices, reimbursing time provided for smoking cessation counseling, and providing national guidance on quitting. EFA President Marianella Salapatas said 'if the recommendations arising from the report coupled with a total ban on smoking in public and workplaces would be fully implemented, Europe could finally breath and have better chance for healthier lives for all’. For more information: EQUIPP report EFA report from the launch

EU News: European Commission publishes 2011 Work Plan

On the 3rd of March the European Commission published its Health Programme Work Plan for 2011. Based on this, the Executive Agency for Health and Consumers (EAHC), which has been entrusted by the Commission to implement the Health Programme, has launched calls for proposals for joint actions, operating grants, projects and conferences in the field of health. All actions are intended to have a European dimension, which means various partners from different EU countries must be involved in each project granted funding. More information on the various funding possibilities can be found here. EFA plans to draw up a short summary of the programme contents.

EU News: Launch of the Tobacco Control Scale 2010 in Europe

On the 23rd of March the results of the latest edition of the Tobacco Control Scale 2010 in Europe were presented at a press conference in The Hague. The 2010 results were based on surveys carried out in 31 European countries. The countries were then ranked according to their progress in implementing specific measures believed to be essential to comprehensive tobacco control programmes; public smoking bans, tobacco price increases, advertisement bans, adequate consumer information and package warnings, and appropriate cessation treatments. The press conference was web streamed, and can be viewed here. Anyone working on tobacco related issues should have a look to find out how their country is doing, and what more needs to be done.

EU News: EMA Launches Online Clinical Trial Register

On the 22nd of March, the European Medicines Agency (EMA) launched the EU Clinical Trials Register. The register is the first online tool to grant public access to interventional clinical trials for medicines authorised in the 27 EU member states, and also provides certain information on paediatric investigation plans – plans to investigate a drug for children’s use - outside of the EU. By working together with various groups, including patients and healthcare professionals, the Agency has sought to ensure that the needs of as many stakeholders as possible have been taken into account in the design of the database. It plans to continue this collaboration so that the register can become a valuable and efficient online public resource.