September 2011 eZine

Welcome to the EFA newsletter!

This month we are getting you up to speed on our projects and actions from August to September. The biggest highlight is that for the very first time, an EU Presidency has prioritized our disease areas; the current Polish Presidency highlights the importance of managing children’s allergies and respiratory diseases early and correctly. More information

Note in your diary: EFA Annual General and Network meeting in Dublin, Ireland 11-12 May 2012! EFA thanks the Asthma Society of Ireland for their invitation to host the event and invites members to join the informal working group to plan for the networking meeting programme: please email susanna.palkonen@efanet.org

EFA News: Polish Presidency announces prioritisation of children's allergy and respiratory disease and holds expert conference in Warsaw

EFA is very pleased to announce that Poland, which took over the rotating presidency of the EU Council in July, will prioritise children’s allergy and respiratory diseases during its 6 month stint at the helm of the EU, in a welcome attempt to advance the prioritisation of this disease area across Europe and overseas. The Presidency's focus on respiratory diseases and allergy forms part of its broader aim to mitigate inequalities in health protection and services in European societies.

For this reason, on the 21-22 of September in Warsaw, a conference was held entitled ‘Prevention and control of childhood asthma and allergy in the EU from the public health point of view: urgent need to fill the gaps’. EFA was invited to play an active role.

The aim of the conference was to highlight asthma and allergies as one of the most common chronic disease areas of developmental age affecting health at the later stages of life. From EFA and member associations, Breda Flood, Per-Ake Wecksell, Susanna Palkonen, Otto Spranger and Anna Androlovics participated and voiced patient concerns. Breda presented patient perspective in the plenary and Susanna moderated a workshop on patient involvement in medical decisions. Breda introduced EFA and spoke about the work it does to promote patient perspective and represent patient needs. She described how the Polish Presidency is a valuable opportunity to provide allergy and respiratory disease with the attention it deserves at European level. Susanna’s presentation stressed the priority of empowering patients – and especially children – to manage their disease; the actions and tools available to promote this; and what the barriers to meaningful patient involvement currently are.

The final goal of the meeting will be the preparation of the Polish Presidency conclusions on early diagnosis, prevention and monitoring of allergy and asthma for children.

EFA News: 1st EFA COPD workshop newsletter and article in the European Parliament Magazine – prevention and early diagnosis 

Following the success of the first EFA COPD expert workshop in the European Parliament in Brussels on June 29 – attended by COPD patients and their representatives, medical experts, MEPs from the main European political parties and representatives from the European Commission – EFA is pleased to announce the publication of the 1st EFA COPD Project newsletter summarizing the outcomes of the workshop. In addition to this, an article written by workshop host MEP Seán Kelly drawing attention to the urgency of addressing COPD and creating awareness of the issue in the European Parliament was published in the European Parliament magazine in June.

A second EFA COPD workshop to be held again at the European Parliament will take place on November 9, focusing on care for COPD patients and research issues. A speaker from Finland will present a model of best practice in COPD care from their country, a member of the GOLD (Global Initiative for Chronic Obstructive Lung Disease) Committee will present the new GOLD guidelines due to be launched only two days before in China, and speakers from our partner organisations for this project (ERS, ELF and IPCRG) will also provide some examples of best practice. Our participating COPD patients will play a central role in the event.

It is hoped that the outcome of the workshops will initiate an "own initiative report" on COPD by the European Parliament. This would be a high ranking recommendation urging national governments to address the needs of COPD patients across Europe.

For further information please contact EFA Project & Fundraising Officer Antje Fink-Wagner at antje.finkwagner@efanet.org  

EFA News: EFA spaeks at EPF conference on rights and needs of older patients as part of the 'Healthy Ageing' agenda

EFA Vice president Christine Rolland was invited to speak from the perspective of older patients with respiratory diseases as a response to the Polish Presidency’s representative presentation on their priorities at a conference of the European Patients’ Forum in Warsaw in June. The conference examined the rights and needs, respect, dignity and quality of life of older patients and their carers in the context of the challenges confronting health and welfare systems such as ageing and sustainability. One of the major conclusions was that older patients and their experiences of managing their disease are valuable resources to learn from. All presentations are available on the EPF website 

EFA News: EFA speaks on involving patients in the development of health information and communication technology 

EFA Executive Officer Susanna Palkonen spoke on ‘New networks, new technologies, new patient’ in the annual conference of the European Federation of Medical Informatics in Oslo at the end of August. Her message was that all IT health solutions – eHealth – must serve the real needs of users, including patients, and involve users in their development. It is clear that there is a willingness to bring this about, but know-how is not widespread. Tools developed by the European Patients’ Forum, for example, could aid patient involvement in a practical way. Examples of health IT solutions are electronic health records, telemedicine and various mobile applications.

EFA News: AirPROM project launches new website

On the 16th of September, the pan-European AirPROM project – in which EFA is partnering, and with the European Lung Foundation (ELF) co-leading on project dissemination to patients and public – launched a new website designed to give the general public and healthcare professionals the chance to learn more about the study.

AirPROM is a five-year EU- funded project, which aims to develop personalised treatments for people with asthma and chronic obstructive pulmonary disease (COPD). Current methods of treatment adopt a ‘one size fits all’ approach rather than tailoring treatments to patient’s individual requirements.

Over the course of the project, the researchers will use a number of techniques from image analysis, bioengineering, computation modeling and more, to develop virtual models of the whole airway system. These models will help to shed light on the optimum treatment that people with asthma or COPD should receive in order to live as normal a life as possible.

The outcomes of this research will help build up a bank of information that can be used to provide patients with a personalised treatment plan.

The website features sections for specific target groups. It will also include a video explaining in brief what the project will include. See also the cartoon video of the project. 

EFA News: EFA joins steering group of new 'ex-smokers are unstoppable' campaign

Breda Flood, President of EFA, has been invited to become a member of the steering group for a new European Commission campaign entitled 'Ex-smokers are unstoppable'. The campaign was launched by the EC DG for Health and Consumers (SANCO) on the 16th of June this year, in order to encourage young adults in the EU – especially young males in the 25 to 34 age group – to stop smoking. The campaign is the successor to a previous EU initiative "HELP - For a life without tobacco" which ran for five years from 2005.

It will be the first initiative of its kind to shift the focus from the dangers of smoking to the advantages of quitting, using ex-smokers and their achievements as inspiring role models. In this way it will attempt to move away from traditional anti-smoking messages – which tend to be negative and focus on dangers – and emphasize the benefits of a smoke-free life.

The Steering Group which Breda will join will play an advisory role in the campaign, and help direct the programme as it moves forward and continues into its next phase. The group's first meeting will take place on Monday 17th of October Brussels. 

EFA News: EFA attends EMA Patients and Consumer Working Party meetings with healthcare professionals, and stakeholder meeting on pharmacovigilance legislation

On 16 & 17 June in London, EFA board member Lina Buzermaniene attended a joint meeting of the European Medicines Agency‘s (EMA) Patients and Consumers Working Party (PCWP) and Healthcare Professionals' Working Group (HCP WG), and the second stakeholder forum on the implementation of the new pharmacovigilance legislation, to become applicable in July 2012 to improve patient safety through better prevention, detection and assessment of adverse reactions to medicines.

At the PCWP/HCP WG meeting, EMA presented its Geriatric Medicines Strategy for the development of medicines for the elderly, and gave an update on the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP), established to strengthen the postauthorisation monitoring of medicinal products in Europe by facilitating multi-centre, independent, post-authorisation studies focusing on safety, benefit and risk.

Topics at the stakeholders forum on pharmacovigilance included the establishment of the Pharmacovigilance and Risk Assessment Committee (PRAC), the introduction of public hearings, direct reporting of side effects by patients and the development of EudraVigilance (a database for reporting and evaluating adverse effects within the EU).

PRAC will include representatives from each member state and 8 additional expert members in different fields. It will be responsible for providing recommendations on any question relating to pharmacovigilance activities with respect to medicinal products for human use and to risk management systems, and for monitoring these systems' effectiveness.

Presenting their views, patients representatives stressed that EMA should encourage education programmmes on pharmacovigilance for national patient groups, and provided direct examples of how patient reporting on adverse reactions can bring added value.
See the presentations and meeting report on pharmacovigilance

Member news: EFA and members attend annual ERS Congress in Amsterdam

EFA and five of its member organizations – Federasma from Italy, Astma Fonds from the Netherlands, the Asthma Society of Ireland, the Italian COPD Patient Association and FFAAIR from France – participated in the European Respiratory Society (ERS) annual Congress in Amsterdam in September. For the first time in ERS history, a special symposium dedicated to patient needs and involvement was organized. During the conference, EFA representatives also participated in meetings with the Patient Input Platform of the U-BIOPRED project, in which EFA is a partner. ERS Congress programme   

EU News: ERS launches roadmap for the European respiratory medicine

The European Respiratory Society presented its priorities for respiratory medicine for the next decade on the 6th of September at the European Parliament. Pim de Boer from the Netherlands Astma Fonds and the whole EFA board took part as representatives of the patient community, as the launch coincided with EFA board meeting in Brussels. The key messages for policy makers are: 97% of resources are spent on care and only 3% on prevention; with the ageing population, Europe needs to deal in a more concerted way with chronic diseases; investment in medical research contributes directly to prevention and treatment; and finally, high quality education & training of health professionals contributes to the health of European citizens. See also the March edition of our ezine.

EU News: Sweden to push EU to ban more chemicals from consumer goods

Swedish chemicals agency Kemi has announced it wants more action on the use chemicals in consumer goods in Europe. Its newly published strategy follows on from its Action plan for a toxin free everyday environment (commissioned by the Swedish government and published last March) and calls for more information to be made available on substances used in consumer goods, and for manufacturers to substitute harmful ingredients. Kemi says that the way products are traded and imported these days means that it is harder to track production processes and ensure safety. It plans to increase its research into the risks posed by chemicals in consumer goods and find ways that the EU could enforce higher standards of chemical safety in this area. The first product fields to be targeted will be building products, furnishings, electronic goods, clothing and toys. Summary of Kemi Action plan in English

EU News: EMA publishes draft guidelines on development of medicines for children

The need for new guidelines for developing medicines for children has resulted from the entry into force in January 2007 of EU Regulation EC No 1901/2006 (the 'Paediatric Regulation'), whose objective is to improve the health of children in Europe by facilitating the development and availability of children's medicines, ensuring they are of high quality and improving the availability of information on their use. This will mean a lot of new rules for the pharmaceutical industry, and the number of medicines applying for a marketing authorisation for use in children will also grow. Existing regulatory documents will need to be supported by specific regulatory guidance on the development of medicines for use in children up to the age of 18.

The document is available for consultation at the EMA website until 31 December 2011.

In addition to this, at the Patients and Consumers Working Party meeting on the 12th of September, EMA launched the new European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA). Enpr-EMA will be comprised of research networks, investigators and centres with recognised expertise in the performance of children's clinical studies. It will facilitate studies in order to increase the availability of medicinal products authorised for use in the paediatric population.

Other News: EFA attends EMA workshop on identifying research priorities for the study of drug-related PML

On the 25th and 26th of July EFA President Breda Flood attended a European Medicines Agency (EMA) workshop on reducing the burden of drug-related progressive multifocal leukoencephalopathy (PML), a rare, debilitating and sometimes fatal disease that has been identified as an adverse drug reaction to some medicines that affect immunological functions, despite the fact that other medicines associated with PML can bring major benefits. More information

Appointments

EFA President Breda Flood joined the European Lung Foundation Council as patient representative