Welcome to the EFA eZine June-July 2009 issue

11-14 June 2009 was a special period for EFA as we held our annual conference The Future of Patient Organisations and general meeting, in parallel with the WHO Global Alliance Against Respiratory Diseases GARD Assembly and followed by the International COPD Coalition (ICC)-EFA First World COPD Patients Conference, all in Rome. EFA members in Italy BPCO and FEDERASMA kindly hosted the conferences and we would like to thank them very warmly.  As a result, new board for EFA was elected, the collaboration between patient organisations and GARD will be strengthened, the definition of a successful patient organisation launched by way of presenting successful projects and Bill of Rights for COPD Patients signed.  Below you will find more information from Rome, as well as current developments on our goal for a Europe without second-hand tobacco smoke.

Marianella Salapatas EFA President

WHO and EFA call for global action on chronic respiratory diseases

EFA and GARD launched a joint press release in connection our meetings in Rome highlighting that both are working with and for people with respiratory diseases for a world where everyone breaths freely. Chronic Respiratory Diseases (CRD) affect one billion people worldwide and every year four million people die as a result. The GARD Action Plan 2008-2013 within the framework of the WHO’s Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases 2008-2013 shows that there is a clear need for collaboration between health policy makers, providers and patient organisations to improve care and the environment and the integration of health concerns into all policies. EFA is a founding member of GARD and is represented in the GARD Planning Group by Otto Spranger.

In Europe, the EU Health Strategy could be a powerful tool to support health in all policies if implemented effectively, in particular making vigorous health impact assessment that takes into account also the needs of people with allergy, asthma and COPD, a requirement for all EU policies. EFA welcomes that the WHO has made chronic respiratory diseases one of its’ priorities and echoes MEP Christina Muscardini in challenging the EU to do the same. The press release is available at: http://www.efanet.org/enews/press.html and WHO fact sheet on CRD: http://www.who.int/nmh/publications/fact_sheet_respiratory_en.pdf

Resources from EFA Conference Future of Patient Organisations

This year’s conference was different from previous years, presenting modern projects with EFA involvement with the aim of defining a successful patient organisation for the future. Success was defined as strong mission statement, high quality information, strong partnerships with key stakeholders and high quality projects. At special interest areas during breaks, the delegates could sign up for EFA’s new working groups, share their educational tools and ask questions from a European re-imbursement expert on care.

Part of the Conference was held together with GARD and EFA President Marianella Salapatas presented slides prepared by EFA members on their most successful projects 2008 to showcase the role of patient organisations across Europe and EFA. The presentations from EFA Conference are available at http://www.efanet.org/EFAConference2009.html and the Abstract Book at http://www.efanet.org/documents/EFARomeConferenceAbstractBook.pdf

New Board for EFA

We are delighted to introduce the new EFA Board, elected by our AGM 12 June; President, Marianella Salapatas, Greece, Vice President, Ondrej Rybnicek, Czech Republic and board members Lina Buzermaniene, Lithuania, Breda Flood, Ireland and Per-Ake Wecksell, Sweden. Jenny Versnel from UK and our long term Treasurer Otto Spranger, Austria were thanked for their invaluable contribution to EFA. To find out more about Board members: http://www.efanet.org/about/governing_body.html 

The new Board had their first telephone meeting 25 June and appointed Otto Spranger as Interim Treasurer until new one is appointed.  They also finalized the updated Framework for EFA Sustainable Partnership with Industry . The purpose is to clarify how we work with industry. EFA is open for diverse partnerships with institutions, non-governmental organisations and industry alike in transparent way and with respect to each others independence. The next board meeting will be in Brussels 7th of September 2009.

New member and new country joins EFA

EFA Annual General Meeting 12 June welcomed Patientenliga Atemwegserkrankungen e.V. from Germany as our new member. Their main aim is to inform and train patients with COPD and Asthma. EFA membership is now 35 associations in 21 countries. European patient organisations representing people with allergy, asthma and/or COPD are invited to become members. Please contact Susanna Palkonen who is happy to give more information and help.

Announcing EFA Conference and AGM 2010

Our next conference and AGM will be held in Vilnius, Lithuania 28-29 May 2010 and hosted by our member the Lithuanian Council of Asthma Clubs. You are all invited, and we will follow up and keep you informed about the themes and progress in this newsletter.

COPD Patients' Bill of Rights

The First World Conference of Chronic obstructive pulmonary disease (COPD) Patients held 14 June 2010 in Rome by the International COPD Coalition and EFA discussed and endorsed the COPD Patients’ Bill of Rights that should be launched and implemented in all countries: The right to receive early and accurate diagnosis; for information and education about COPD; for support and understanding; to receive care and treatment that will benefit them; to their fair share of society’s involvement and investment in their welfare and care; to advocate with other COPD patients and supporters for improved COPD care and COPD prevention and to safe air and environment.

EFA and ICC call on policy makers at international, national and local level and healthcare professionals to work with patient organizations and make COPD, the fourth leading cause of death, source of unnecessary suffering and delayed diagnosis a public health priority by raising awareness about the disease, diagnosis and treatment, introducing strict smoking bans in public areas, creating and carrying out effective COPD prevention and management programs and ensuring that medication is available and affordable for COPD patients. The abstracts from the Conference including the Bill of Rights are available: http://www.internationalcopd.org/Conference/2009/Abstracts_Bios.pdf

Comprehensive smoke-free laws now in place in 10 European countries

The countries where smoking is entirely banned in public and workplaces and transport – including also pubs and bars are Ireland and UK and Bulgaria is to follow in June 2010. Italy, Sweden, Malta, Latvia, Finland, Slovenia, France and the Netherlands have opted legislation allowing special enclosed smoking rooms. This makes 10 countries with comprehensive protection.

1 in five Europeans are still exposed to second hand smoke on daily basis, and in Greece, Bulgaria and Slovenia 40%. 84% of Europeans support banning smoking in public places and indoor workplaces, 77% in restaurants and 61% in bars and pubs, so the support is widespread and strong. Source: The Flash Eurobarometer survey on Tobacco, March 2009 (Flash N° 253)

Smoke free Europe by 2012?

The EU Health Commissioner Vassiliou presented 30 June 2009 in a press conference at the European Commission in Brussels a proposal for a European Council Recommendation on moving forward with the second-hand smoke issue at European level. EFA attended the event. This is in the follow up of the so-called EU Green Paper on Smoke free Europe, published 2008  that set the options for action at European level and a public consultation followed.

EFA believes that also at EU level binding legislative action is needed as well as at member state level to protect ALL. The option chosen by the Commission is a combination of legislative and non-binding measures: a Council Recommendation (a topic of this press conference) and upgrading EU workplace legislation. In parallel, the Commission DG Employment will launch this year consultation on the protection of workers from risks related to exposure to environmental tobacco smoke at the workplace (upgrading EU workplace legislation).

EFA welcomes that the Commissioneracknowledged that people with existing disease such as asthma are particularly vulnerable ‘even with life-threatening consequences’.

The Recommendation calls on Member States to act in three main fronts:
1. Adopt and implement laws to fully protect their citizens from exposure to tobacco smoke in enclosed public places, workplaces and public transport as cited in Article 8 of the WHO Framework Convention on Tobacco control, within three years of the adoption of the Recommendation
2. Enhance smoke-free laws with supporting measures such as protecting children, encouraging efforts to give up tobacco use and pictorial warnings on tobacco packages.
3. Strengthen cooperation at EU level by setting up a network of national focal points for tobacco control.
EFA will be following up the developments and take action with members.

More information: The Proposal for a Council Recommendation on Smoke free environments; Overview ofEC actions on tobacco control, including a map and table of EU member states and their smoke free regulations; Q&A on the Commission proposal on smoke-free environments

In the next issue of this newsletter after summer break we will highlight the Swedish EU presidency and health, the EU Directive proposal on food labeling and allergy, EFA member activities and EFA working groups and more. In the meantime we wish you a relaxing summer break.