New Hope for People with Allergy and Future Generations

EFA is delighted to be a partner in the MeDALL project – Mechanisms of the Development of Allergy – a large new research project that will investigate the causes of allergy. MeDALL is funded by the EU Research Programme, the FP7. The project results should help to provide better answers as to why and how allergy develops, and to design, clarify and target prevention opportunities and innovation in treatment.

Allergy often starts in childhood and it is children who are the focus of MeDALL. Information from previous birth cohorts, including 42,000 children in Europe, will be looked at, and 18,000 re-examined using similar methods. MeDALL’s five year programme was kick-started on the 24th of January in Barcelona by the first MeDALL Scientific Seminar summarizing what we currently know about different types of allergy/allergic diseases (IgE phenotypes) and what the gaps in knowledge are. On the second and third day of the meeting the different work streams were organized.

EFA’s role in the project will be communication, dissemination and offering a patient perspective. There will be a fact sheet summary on any significant scientific paper drawn up by MeDALL, directed to lay-audiences. EFA will keep its members informed throughout the project and it is foreseen that training for patient representatives will be organized duringit. EFA will also help MeDALL to contribute to EU policy. I would like to thank Professor Jean Bousquet, the coordinator of MeDALL for taking on this crucial topic – why, how and what can we do?

Per-Åke Wecksell, EFA Board Secretary and Board Lead for MeDALL Project
More information: EFA Press Release; Article on EC website; EFA Presentation; MeDALL Brochure

EFA News: Association Asthme & Allergies France launches new website

Association Asthme & Allergies has launched a new interactive website. The site is a collaborative initiative which gives people with asthma and/or allergy, their families/relations and health professionals in the field the opportunity to share their testimonies and claims, particularly in connection with the French health care reform. It features discussion forums, a news blog, personal accounts and a weekly opinion poll. The Association hopes it will become a useful tool for people with allergy and asthma across France.

Member News: Prévention des Allergies Belgium co-produces Allergy Leaflet Campaign

Prévention des Allergies, in co-operation with the Belgian Ministry for Health and the consumer association Test-Achats, has produced a new leaflet providing information on good practice in the preparation of pre and non pre-packed foods, and food sold loose and in restaurants, in order to better protect people with food allergy. To order a copy of this leaflet please see this page.

Member News: FEDERASMA Italy announces introduction of prevention guidelines for allergy and asthma in Italian schools

Federasma is proud to announce that after many years of hard work, the Italian Ministry of Health has issued “Guidelines for Prevention of Allergy & Asthma Risk Factors in Schools”. The guidelines are a result of an agreement between the Italian and regional governments, and will allow for the development and implementation of real measures to improve air quality in Italian schools.

This will contribute to reinforcing prevention policies in Italy and protecting people with chronic respiratory diseases, in particular children’s health. The programme is one of the initiatives of GARD (Global Alliance Against Chronic Respiratory Diseases) Italy - created in mid 2009 within the Italian Ministry of Health - and of the Working Group formed for this purpose, in which Federasma represents not only its members, but all the Italian associations of people with respiratory diseases.

EFA News: EFA attends the U-BIOPRED project annual meeting

EFA attended the annual meeting of the U-BIOPRED project in Barcelona on the 17th and 18th of January this year. EFA is a partner in this project, which aims to understand more about severe asthma by gathering patients, scientists, and other stakeholders to collaborate in pioneering asthma research. The project has been underway for one year, and some significant targets have already been met. With clinical trials of patients due to begin in the course of this year, the meeting also heard from patient representatives – the so-called U-BIOPRED Patient Input Platform – who offered their view on how best to ensure positive results.

EFA News: EFA makes joint submission to public consultation on Tobacco Products’ Directive

Before Christmas 2010, EFA made a submission to the European Commission’s public consultation on the possible revision of the EU Tobacco Products’ Directive. The submission was based on that compiled by ENSP (European Network for Smoking and Tobacco Prevention) and ECL (European Cancer Leagues). The consultation was held in order to gauge public opinion onwhether and how tobacco product regulations should be changed in Europe. The submission recommended, among other things, that pictorial health warnings be made mandatory on all tobacco products, and a ban placed on tobacco vending machines and all promotional displays in stores. Submission

EFA News: EFA attends 'Regulatory Science: Are regulators leaders or followers?' conference by the EMA

On the 15th of December, EFA board member Lina Buzermaniene participated in a conference entitled “Regulatory Science: Are regulators leaders or followers?” organised at the European Medicines Agency to mark the departure of executive director Thomas Lönngren.

Atthe conference it was pointed out that during Mr. Lönngren’s 10 years' direction, the Agency expanded its functions from evaluation of medicines to the granting and refusal of marketing authorization. This and other initiatives are described in the Agency’s “Road Map to 2015”, the final version of which was approved in December and published in January 2011.

Mr. Lönngren expressed his concern at the amount of money being spent each year on research and new medicines, despite the fact that only 7-9 of these make it onto the market. He asked if a large part of this could not be better used – if not for medicines, perhaps for disease prevention and other important causes. He said that the Agency’s ‘Roadmap’ committed it to providing early advice to medicine companies so that they can avoid failure to gain approvalas a result ofmistakes in authorization applications. The Agency will attempt to stimulate research to develop new medicines and encourage more individualized ones, highlighting its global approach and interest in improving public health.

The event featured presentations on benefit risk-assessment, novel technologies for clinical trials helping tominimize patientrecruitment, efficacy-effectiveness gaps and other topics.

EU News: New ‘Europe for Patients’ website launched

The new-look ‘Europe for Patients’ website has been launched. The site, part of the European Commission ‘Europe for Patients’ campaign to highlight different European healthcare and patient related policy initiatives, now has a new and more vibrant content. It offers a thematic and multilingual forum where factsheets, news, events, updates and press releases can be viewed. The ‘Europe for Patients’ campaign gives information on EU initiatives covering 11 policy areas that according to the Commission have the common goal of achieving better healthcare for all in Europe.

EU News: Health Priorities of the Hungarian Presidency of the EU

Following Belgium, Hungary has now officially taken over the Presidency of the EU, which rotates amongst the 27 Member States every 6 months. In the lead-up to this, Hungary indicated what its priorities in the area of healthcare were likely to be. This includes placing emphasis on solidarity and innovation in healthcare, despite the current economic climate. The challenges that Europe is currently facing – an ageing society, the development of new technology and the sustainability of health systems – will not be met unless this is the case, it says. It will encourage ongoing investment into sustainable healthcare, new models that increase efficiency, and the development of e-health systems. It will concentrate in particular on supporting initiatives relating to the ageing European society. Hungary has indicated that it hopes to oversee progress on certain issues that are still open, for example the draft legislation on information to patients on prescription medicines. EFA looks forward to concrete actions on behalf of the Presidency.
More information: Hungarian Presidency priorities; Hungarian Presidency statement at Global Health Forum

EU News: Active and Healthy Ageing Initiative

Between 2010 and 2030 the number of Europeans over 65 is due to rise by 40%. This will be a major challenge for European health systems, resources and populations. In an attempt to turn these challenges into opportunities, the European Commission has dedicated the 2nd European Innovation Partnership (EIP) – an initiative of the ‘Innovation Union’, developed under the Europe 2020 Strategy – to ‘Active and Healthy Ageing’.

It will have the triple aim of improving the health and quality of life of older people, enabling them to live active and independent lives, and improving the sustainability and efficiency of social and health systems across Europe. The overall aim of the Partnership will be, by 2020, to increase the average healthy lifespan of people in Europe by 2 years. It will look not only at the challenges of the health sector but its potential for innovation. Current weakness in this area will be addressed, and key stakeholders will be gathered to identify solutions.

The European Commission held a public consultation on the initiative, in order to gain the views of the public on how best to bring about positive change. It was possible to make a contribution to this consultation until the 28th of January, and EFA supports the submissions of the European Patients’ Forum, and the Health and Environment Alliance (HEAL)of which we are members. For EFA, active and ‘as healthy ageing as possible’ for people with allergy and respiratory diseases (in particular COPD as patients tend to be older) has always been a priority and it therefore welcomes initiatives that enable barriers to be broken down.

EU News: European Parliament paves way for EU cross-border healthcare

On the 19th of January, the European Parliament voted in favor of a Directive on EU cross-border healthcare (see our December eZine), which will allow residents to seek healthcare anywhere across the European Union. The Directive is primarily expected to benefit patients living close to national borders and those with rare diseases, and will, for example, allow prescriptions to be recognised across borders. The Directive should come into force in 2013. The European Patients’ Forum, of which EFA is a member, welcomed the proposal from the beginning as a positive measure. The version voted on January 19th fell short of EPF’s and other patient organisations original expectations – notably in failing to make direct reimbursements for cross-border care mandatory but instead voluntary and depending on Member States – but was nevertheless welcomed as a first step in the direction of clarifying and strengthening EU patient rights. Also praised was the planned establishment of ‘national contact points’ for patients seeking information on treatment abroad.

Press release;EPF stance