March 2010 Issue

2010 declared Year of the Lung

EFA is a partner of the 2010: The Year of the Lung, an international campaign launched by the Forum of International Respiratory Societies and the European Respiratory Society. This initiative aims at raising awareness about lung health through better information on prevention, risks and symptoms. The main objective is to make lung health a priority on political agendas and EFA very much shares this objective and our target is the European Union. EFA has also dedicated this year ‘In Memory of Mariadelaide Franchi’, our Honorary Member who sadly passed away in January. She was a patient leader in Italy, Europe and the World and moved mountains where others gave in.

Our highlight of the year is EFA event at the European Parliament in June where the EFA Book on COPD in Europe ‘Sharing and Caring’ will be presented, culminating to a call to action on COPD for Europe. More information on the Year of the Lung and how to participate is available here: http://www.2010yearofthelung.org/1366-partners.htm

Marianella Salapatas, EFA President

The Case of Reimbursement and Health Technology Assessment- EFA conference 2010

Are organizations representing people with allergy, asthma and COPD involved in reimbursement and health technology assessment processes? How are decisions made? Thee 14th EFA Conference 28-29 May in historical Vilnius will look at equal access to healthcare in Europe through case studies, best practice examples and overviews from government officials, academia and of course patient groups. EFA annual general meeting for members is held 28 May, and the Agenda has been sent to members:
Conference Programme:
http://efanet.org/activities/documents/EFAConferenceProgramme2010.doc
Registration form for the Conference:
http://efanet.org/activities/documents/EFAConfRegistrationFormVilnius.doc

Greetings from EFA Meet and Greet EU institutions training

In December a group of EFA members congregated in Brussels for EFA’s annual intensive two days to meet and greet the European Parliament, the Council and the Commission services responsible for health determinants, tobacco control, air pollution and food labeling. According to feedback it is good to visit the institutions and get an insight in how they function. The program needs to give more space for communication among members and there could be two kinds of programs; one for beginners – like this and an additional program building on the knowledge that has been given.
More on this event: http://www.efanet.org/activities/events.html

Announcing EFA event at the European Parliament on Chronic Obstructive Pulmonary Disease (COPD)

44 million people in Europe have COPD and that number continues to increase, therefore incentive to raise awareness and fight this disease at European level are needed.
EFA event will be hosted by MEP Catherine Stihler, on the 30th of June in the European Parliament. It will bring together patient representatives, health care professionals and officials from the EU institutions to discuss COPD and support a Call to Action for Europe.
Agenda of the event: http://www.efanet.org/activities/documents/COPDEventAgendaEFADraft.doc

EFA at The European Life Science Circle's "Patient Empowerment - A new Paradigm in Disease Management?" Event

EFA Board Member Lina Buzermaniene spoke about learning to live with chronic respiratory diseases during this event that was hosted by MEP Jorgo Chatzimarkakis. The objective of the meeting was to highlight how empowering patients with chronic diseases can lead to a better medical outcome, while decreasing the costs of health care.
Lina presented EFA, and then showed some patient perspectives about living with allergy, asthma and COPD. She demonstrated the need for a continuous education of the patients, through peer groups, and a partnership relationship between patients and healthcare professionals. She concluded that patients have a right to understandable information, and support, to adhere to their therapy and have a better quality of life.
Link to Lina Buzermaniene’s presentation:
http://www.efanet.org/enews/documents/EFAlearntolivefinal-ELSC.ppt
Link to a full report on the event.

EFA member news: Week 15 is the Allergy Week in Finland

The Finnish Allergy and Asthma Federation and its’ member associations organize yearly Allergy Week in April 12th-18th. As before, we meet people in shopping centres and all around the country. For the first time, our allergy nurse will answer the questions on our web site discussion forum during the week. That is additional to our normal allergy help line. Allergy Week is our way to remind people about the coming pollen season, to give information and to reach new members! For more information contact Elina Demir elina.demir@allergia.com, www.allergia.fi

EFA member news: Asthma Highlighted as a Priority in National Health Service Plan in Ireland

The Asthma Society of Ireland’s Demonstration Project was highlighted last month in the 2010 National Service Plan as part of a programmatic approach to tackling asthma as a chronic disease in both primary and secondary care.
By using the Demonstration Project as an example of an effective patient centred approach to managing chronic disease and by building on the data from the study, the Health Service Executive is affirming the achievements of the project so far. This is a great example of what can be achieved when a patient organisation works in partnership with healthcare professionals and health service providers.
The expected results are increased profile of asthma in the health service agenda and prioritisation of asthma in the national health service plan.
For more information: http://www.asthmasociety.ie/news/news102.html
http://www.asthmasociety.ie/news/news74.html

New EU Treaty, the Lisbon Treaty: What it may change for health policy

The Lisbon Treaty offers new opportunities for action by the European Union in the field of health. It preserves the competence of Member States on public health policy, but when common safety concerns in public health are identified, the EU shares competence and can introduce legally binding legislation.
Secondly, the treaty makes the well-being of people an objective of the EU. The Article 9 and 168 of the Treaty on the functioning of the European Union puts in place ‘horizontal clauses’ about health. This means that the European Commission will have to take into account the impact on health in each of its proposal for legislation.
Thirdly, the treaty also strengthens cooperation and coordination of Member States’ health policies, and sharing of best practice, in order to make the Member States health services more complementary in cross-border areas.
Fourthly, the EU is now allowed to adopt incentives to “protect and improve human health”.
Finally, the Lisbon Treaty makes the Charter of Fundamental Rights of Citizens legally binding (except for the three countries which opted out: Czech Republic, UK, Poland). This charter includes a right to preventive healthcare and to Medical treatment.
Source: Euractiv “EU health policy clout “strengthened” with new Treaty.” http://www.euractiv.com/en/health/eu-health-policy-clout-strengthened-new-treaty/article-187926
Treaties: http://eur-lex.europa.eu/JOHtml.do?uri=OJ:C:2008:115:SOM:EN:HTML

Spanish EU Presidency of the Council: Health Priorities

The Spanish Presidency has the following priorities in health: the reduction of inequalities in health, continuing care and clinical excellence, particularly in non-communicable diseases, e-Health (the use of technological tools in health), patient safety, the Pharmaceutical package, including directive proposals on pharmacovigilance (safety of medicines), on counterfeit medicines, and information to patients on prescription medicines. Finally, food safety is also a priority, including consumer information.
Source: Spanish ministry of health and social policy: Priorities and Calendar of activities of the Spanish Presidency

European Commission proposal for regulation on Food labelling: More information on allergens for consumers?

In its proposal for regulation on "provision of food information to consumers", the European Commission proposes that all food containing allergenic substances must be labeled, whereas in the current legislation only pre-packaged food is covered. This means that restaurants and catering establishments would have to indicated the presence of allergenic substances and therefore more informed and safe choice for people with food allergies. A report on this proposal should be discussed by the Parliament's Environment and Health (ENVI) Committee on the 16th of March, and the text may be discussed in plenary session at the European Parliament in June. EFA is currently preparing a briefing for its members on this regulation.
For more information on this proposal: click here.

Adoption of the Council Recommendation on Smoke Free environments

The European Council adopted on the 30th of November a recommendation on smoke free environments. It recommends that EU Member States comply before the end of 2012 with article 8 of the the WHO framework convention on Tobacco control, which deals with protection from exposure to tobacco smoke in indoor workplaces, indoor public places, public transport and as appropriate other public places. It insists on the importance of developing a strategy to protect children and adolescents from second-hand smoke. Finally, it encourages Member state to communicate national focal points for tobacco control within 6 months of the adoption of this text. Even if this is only a recommendation, it is an expression of political will and advocates for clean air can use this. Another initiative going on is the possible upgrade of the EU workplace legislation to ban SHS. EFA strongly supports this and will follow up.
Resolution of the European Parliament on smoke-free environments: http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT TA P7-TA-2009-0100 0 DOC XML V0//EN

The European Patients' Forum tools on patient involvement in EU policy and projects

EFA collaborated in the EPF’s Value Plus Project, which consisted in exchanging information, experiences and best practices on the involvement of patients and patient organisations in EU supported health projects. The Value Plus Project aimed at showing the added value of the involvement of patients in EU health policies and projects, and increasing the capacity of patient organisations to participate. A final conference was held in December 2009 in Gothenburg where the following tools were published:
The Value Plus Toolkit for patient organisations on on how to get involved in EU funded projects, plan, evaluate and manage.
The Value Plus Handbook for project co-ordinators and promoters.
See also the Value Plus Policy Recommendations for the European Institutions and Member States on Patient Involvement in health programmes and policy.
All tools are available at: http://www.eu-patient.eu/Initatives-Policy/Projects/ValuePlus/Resources/Value-Resources/

EFA in the news

A role for Europe, EU needs to take a strategic approach on allergy and respiratory diseases, Parliament Magazine January 2010: http://viewer.zmags.com/publication/8119c6af#/8119c6af/60
Where is the vision? EU must develop patient centred action plan on allergy and respiratory diseases: Parliament Magazine http://viewer.zmags.com/publication/357a4a63#/357a4a63/10