ezine archive
November 2010 Issue
EFA launches video clip to mark World COPD Day 2010
On the 17th of November, to mark World COPD Day 2010, EFA launched a video clip. The clip highlights issues surrounding COPD for patients, the medical community and policy makers, in an attempt to raise awareness of the disease. It presents key information on COPD, as well as patients’ experience of living with it, and also features the launch of the of the EFA publication on COPD in twelve European countries and Call to Action to European policy makers, which took place at the European Parliament in June this year. The video clip is also available on YouTube, and on EFA’s events blog. I invite you to link up for the video and all members are welcome to use it in their events and presentations.
In a further action to mark World COPD Day 2010, I spoke at the European Parliament representation in Scotland, at an event hosted by one of the leading advocates for COPD, MEP Catherine Stihler. I was delighted to contribute, along with officials from the Scottish Government and Parliament, campaigners and the British Lung Foundation, to this discussion on why COPD is such a silent killer in Scotland, and what we can do about it.
Marianella Salapatas, EFA President
EFA Event: EFA AGM and Network meeting 2010 in Paris
EFA will hold an annual general meeting of members on the 6th of May, followed by a networking meeting on the 7th of May. Members will have the opportunity to give input about EFA policies and activities to better serve the interest of people with allergy, asthma and COPD and improve services for members. The networking day is entirely dedicated to sharing information on projects and policies at national level and disussing with colleagues from across Europe. It's also an opportunity for the EFAworking groups to meet face-to-face. All EFA members are invited to present during the network meeting or propose a specific theme for discussion. All patient groups who are not yet EFA members can attend as observers, and those who have contacted us for membership before the AGM are also welcome. Please contact: info@efanet.org
EFA News: EFA member NAAF celebrates 50th anniversary
On the 25th of September this year, EFA had the honour of attending the 50th anniversary of the Norwegian Asthma and Allergy Association, NAAF. Since EFA's foundation NAAF has been a cornerstone of its work, as well as of the European patient movement. It has always had an ambitious vision for EFA, and has actively contributed to its work, both as a board member and a member always ready to respond, share initiatives with those abroad and take initiative to improve EFA's work for people with allergy and asthma.
The anniversary was a very enjoyable event, and the largenumber of participants made the evening a memorable occasion. Per-Åke Wecksell, board member of EFA, presented the President of the NAAF board, Mr. Pål Johansen, with the gift of a book of the works of the Belgian painter Rene Magritte, and passed on EFA’s warmest wishes for the future.
EFA News: U-BIOPRED project launches art contest for people with asthma in Europe
U-BIOPRED, a research project in which EFA is taking part that aims to understand more about severe asthma, is launching an art competition to help bridge the gap between patients’ and doctors’ perceptions of asthma and raise awareness of the disease. The competition is open to anyone who wishes to enter, and who would like to express their experience of living with asthma through art. Entries are welcome until the 1st of May 2011, and will be judged on the basis of artistic skill, composition and emotional impression. The winners will be invited to a multimedia science/art show in Amsterdam. The announcement will soon be available in several European languages thanks to EFA members who have volunteered for translations.
EFA News: Chronic respiratory diseases discussed at 13th European Health Forum in Gastein
On the 6th to the 9th of October this year the thirteenth European Health Forum took place at Gastein, Austria. It is perhaps the biggest annual conference on EU public health policy. EFA welcomes the fact that for the first time, respiratory diseases had a dedicated session entitled “Chronic respiratory disease: a neglected epidemic”. EU policy-makers called for urgent action to halt the growing epidemic of chronic respiratory diseases. The session highlighted extent the problem of respiratory illness in Europe, as well as the lack of awareness on the issue that exists and the secondary problems it engenders; two thirds of people with COPD remain undiagnosed, and inequalities in treatment persist. Speaking at the session, EFA President Marianella Salapatas said “earlier identification and treatment leads to a greater likelihood of limiting the impact of COPD, protecting the quality of life and life expectancy of those affected. We need co-ordinated public awareness campaigns and the creation of screening guidelines and mandates for early diagnosis and management of the disease.” See the press release
EFA News: Introducing HealthVent project
EFA is the partner representing patients in a new two and a half year project funded by the EU Public Health Programme: Health based ventilation guidelines for Europe. The guidelines, which will be produced in collaboration with the multidisciplinary project partners in 10 countries, the Federation for European Heating Ventilation Air Conditioning Associations (REHVA), EFA, the WHO European Centre for Environment and Health and the EC Joint Research Centre (JRC), are to form the basis for the revision of relevant building codes and standards, and take into consideration health, energy efficiency, different building types and climate conditions in Europe. Indoor air quality is a key priority for people with allergy, asthma and COPD, and EFA therefore welcomes this partnership and project with practical results, and hopes that it will help to stimulate a strategic approach to IAQ by the EU. EFA’s role in the project, in collaboration with interested EFA members, is to review the evidence, collect relevant information from patients’ perspectives, review the guidelines and disseminate project information to our members and partners. For more information: Project brief
EFA News: Update on European Medicines Agency policy development
The European Medicines Agency has adopted a revised policy on the handling of conflicts of interests of Scientific Committee members and experts. Depending on the level of conflict of interest, restricted involvement in the Agency’s activities may be applied. The new policy will be further discussed at the meeting of the EMA Patient and Consumer Working Party (PCWP).
We would like to draw you attention to the fact that public consultation on the Draft guideline on clinical investigation of medicinal products in the treatment of Chronic Obstructive Pulmonary Disease (COPD) has been announced. EFA is collecting comments from members and allies to draft a joint submission from patients’ perspective. EFA members are welcomed to send their comments to the EFA office by the 15th of January 2001.
On the 29th of November, two new EFA experts in reviewing EMA documents for the public (vice-president Christine Roland and board member Per-Ake Wecksell) will take part in an EMA training session on the review of medicinal product information. On the 30th of November board members Lina Buzermaniene and Per-Ake Wecksell will take part in the EMA PCWP meeting with all other organizations eligible for co-operation.
On the 15th of December Lina Buzermaniene, EFA board member, is attending a
conference entitled "Regulatory Science: Are regulators leaders or followers?"
held at the European Medicines Agency offices to mark the departure of Thomas
Lönngren as Executive Director of the European Medicines Agency at the end of
2010. As the recruitment procedure for the new director will not be completed by
the time ofhis departure, the Agency has appointed Andreas Pott, the current
Head of Administration, to serve as Acting Executive Director from 1 January
2011. During Lönngren’s period EMA has become one of the best examples of
genuine patient involvement and EFA hopes that EMA will remain at the forefront
of this in the future.
More
information on EMA, patient involvement and resources for patients
Member News: Bulgaria
Bulgarian EFA member ABBA has launched a leaflet in English presenting the organisation and its activities. These include events to mark World Asthma Day in Bulgaria 2010, and the founding of a Coalition for Life Without Tobacco Smoke, among others. ABBA website
EU News: Belgian Presidency and ERS place spotlight on respiratory diseases
The European Respiratory Society supported by EFA and other associations organised on the 19th of October in Brussels a conference under the EU Belgian Presidency on respiratory diseases. Dominique Hamerlijnck, volunteer patient from the Astmafonds, the Netherlands, started the day off by telling her story of growing up and living with respiratory disease. The ERS experts gave an overview on respiratory diseases in different ages, before birth into old age. EFA President Marianella Salapatas spoke about the need to implement ‘health in all policies’ at the EU to enable people with respiratory diseases to live normal lives, and EFA board member Lina Buzermaniene reiterated this by sharing her views on how and why patient empowerment through self-management is key in chronic disease. View the presentations.
Finally, ERS presented their ‘Respiratory Roadmap’, a series of actions on respiratory medicine needed from the perspective of pulmonary specialists. EFA would like to congratulate the ERS for a successful event that will hopefully contribute to EU policy makers placing more strategic priority on respiratory diseases. On the 20th of October, the Belgian Presidency held a high level conference on innovative approaches in chronic diseases. More on the outcomes of this conference in our next eZine.
EU News: ENSP holds network meeting and issues declaration on smoking in public and workplaces
On the 8th and 9th of November, EFA attended the European Network for Smoking and Tobacco Prevention (ENSP) network meeting in Brussels entitled ‘Towards a tobacco-free Europe’. Speakers and participants from a wide range of backgrounds were present, and discussed the challenges and possibilities of regulating for a smoke-free Europe.
Among the main topics addressed was the possible revision of the Tobacco Product Directive (which is currently in the public consultation phase, with submissions possible until 17 December) and its potential to bring about change; the need to enforce plain packaging, pictorial warnings and display restrictions on tobacco products; the WHO Framework Convention on Tobacco Control (FCTC) and its significance for the ratifying countries; parents’ responsibility to protect children from secondhand smoke, and the possibility of a regulation change to protect European workers from exposure.
Participants agreed that a total ban on public area smoking without restrictions must be enforced in Europe, and ENSP have since issued a declaration to be circulated to MEPs, health ministries and the public. EFA welcomes the declaration and reiterates the absolute necessity that people with respiratory disease be allowed to breathe smoke free air everywhere in Europe.
EFA report on the meeting
EFA in meetings: Highlights
1 September, Brussels: EFA had a high level meeting with the ERS and ELF on strengthening collaboration
18-22 September, Barcelona: EFA had a stand at the ERS Conference and distributed the EFA Book on COPD in Europe and the related Call-to-Action on COPD for Europe
19 September, Barcelona: The Global Asthma and Allergy Patients Platform GA²PP, an initiative from EFA coordinated by Antje Fink-Wagner, EFA Project and Fundraising Officer, held a meeting and discussed next steps. More in our next eZine.
19 September, Barcelona: At the International COPD Coalition meeting, Susanna Palkonen, EFA Executive Officer, presented 'the COPD Patient Europe Report' – EFA actions 2010. The 2nd World Conference of COPD Patients was announced by the ICC for Shanghai 6-7 November 2011.