On this World Asthma Day of May 7, 2013 the European Federation of Allergy and Airways Diseases Patient’s Associations (EFA), the European Academy of Allergology and Clinical Immunology (EAACI), the European Union of Medical Specialists (UEMS) and Allergic Rhinitis and Its Impacts on Asthma (ARIA) are handing over an Allergy Alert Paper to the European Commission and to the ENVI Committee of the European Parliament.

EFA, EAACI, UEMS and ARIA jointly request the European Commission and the European Parliament to endorse changes to healthcare systems across Europe in order to help patients suffering from allergy to have a proper diagnosis of their disease. Nowadays, primary care practitioners (PCPs) are the ones who are seeing allergy patients most routinely. However, they often lack the knowledge in allergy and don’t understand how a proper diagnose can improve the quality of life of their patients.

“We are therefore requesting one single model of education for physicians European-wide which will help building a base for earlier diagnosis of allergy. PCPs have to be included in allergy education to be able to identify that a patient is at risk, manage the first diagnosis and send difficult cases to a specialist,” EFA president Breda Flood explains. If by 2040 every second citizen in the EU suffers from allergy and PCPs are unable to recognise and treat this disease, then we would need many more specialists.

In order to improve the care of patients and relieve the pressure mounting on medical community in Europe, which is deprived of adequate education in the field, the European Commission and the ENVI Committee of the European Parliament should introduce the following fundamental changes to healthcare systems across Europe regarding pre- and postgraduate medical education:

1. The formal recognition of a full medical specialty in Allergology and of a formally recognized sub-specialty of Pediatric-Allergology throughout all EU member countries.
2. The increase in quality and the harmonization of education for allergists and PCPs.
3. The development and implementation of an educational model of Allergology in Medical Schools across Europe.

According to the Global Allergy and Asthma Network of Excellence, it is estimated that the annual cost of asthma in Europe is over € 18 billion and allergic rhinitis may cost up to € 100 billion. Recognition of a common educational curriculum in all EU countries and the harmonization of education for allergologists across Europe would thus bring benefits not only to allergy patients, but also to society. Mutual recognition of Allergology among all Member states could be the first step.

Help EFA’s effort to relieve the burden of respiratory allergies on European societies by signing the Call to Action today!

EFA Press Release WAD Allergy Alert

Allergy Alert Paper

In April the ENVI committee of the European Parliament adopted amendments to the 7^th Environmental Action Programme. According to the committee the EU should develop a strategy for indoor air quality and respect WHO indoor and outdoor air quality guidelines. EFA advocated for and welcomes this decision. A common comprehensive and urgent response is needed based on the recognition that outdoor and indoor air is basically the “same air” that affects our lungs. More about the 7th EAP can be found here.

Tobacco Product Directive

On April 24 MEP Linda McAvan (S&D) finally presented her report on the Tobacco Product Directive to the ENVI Committee of the European Parliament. EFA advocated for and welcomes rapporteur’s position on plain packaging which proposes to go even further than the original directive proposed by the European Commission! Presentation of McAvan’s report was then followed by discussion on plain packaging, pictorial warnings, snus, and e-cigarettes. Special attention was also given to so-called slim cigarettes and their effect on young women.  EFA has been advocating for a strengthened directive to prevent young people from starting to smoke, help smokers to quit and in general safeguard the health of European citizens, including patients.

Medical Devices Regulation 

MEP Dagmar Roth-Behrendt (S&D) presented her report on the Medical Device Regulation to the ENVI Committee of the European Parliament. The main change compared to the Commission’s proposal is the insertion of a pre-market authorization system similar to that of medicinal products. EFA has been monitoring this topic very closely to ensure that the perspective of people with allergy and respiratory diseases is taken into consideration, patients’ safety and involvement are enhanced and transparency strengthened.

The Review of Thematic Strategy on Air Pollution

Representatives of Member States, industry, NGOs and other international stakeholders met on April 3 in Brussels to further discuss the review of the Thematic Strategy on Air Pollution. This strategy is designed to achieve better levels of air quality and its main objective is confirmed in the recently adopted proposal for a new EU Environment Action Programme. At the meeting results of the online public consultation were presented together with studies on socio-economic impacts, emission reduction proposals and new scientific evidence on air pollution and health.

For the on-line public consultation, the European Commission received 1934 responses from general public and 371 responses from experts and stakeholders (including EFA). According to the results, EU citizens and stakeholders are in favour of strengthening emission controls, while industry is less inclined to do so. Similarly, citizens, NGOs and experts are calling for bringing emission limits closer to WHO guidelines, while industry is not in favour of this option.

On the basis of scientific evidence provided by WHO, there is a substantial scope for future emission reductions from dedicated air pollution control measures. The WHO also presented new findings that air pollution affects asthma and airways diseases and declared that WHO air quality guidelines have to be revised. Even though the Commission foresees ambient air quality standards, they will still be under values identified by WHO.

Prior the meeting, EFA together with other 60 NGOs signed a letter addressed to all three European institutions calling to adopt emission reductions and sector legislation and enforce air quality limit values. EFA office in Brussels will continue its activities and monitoring of development in the EU air quality policy.

You can watch the meeting online here. For more information, check the website on Review of the EU Air Policy.

On the 19th of April patients’ advocates, academia and other stakeholders met at the EUPATI 2013 Conference (European Patients Academy on Therapeutic Innovation) focused on real world healthcare hot topics. At the meeting EFA was represented by Board Member Lina Buzermaniene.

EUPATI projects aims at building patients’ learning platform in research and development (R&D). It is providing tools and knowledge which can make a difference to patients, advocates, patient organisations and the general public.

At the conference delegates were discussing three main topics: patient involvement in medicines research and development (R&D), building competences and knowledge in medicines R&D and increasing the public awareness of benefits and risks of new treatment development. EUPATI director Jan Geissler stressed out that there are still too many empty seats in R&D and with help of EUPATI patinets will be finally ready to take them and have impact on the development.

Participants were looking to the future: 2020 and three years beyond. „A lot of existing best practices examples on learning resources were shared and discussed. Speakers together with the audience took a closer look at current patinet involvement in research and talked about the future objectives,“ Buzermaniene said.

To learn more about EUPATI check these learning projects – Building reasearch partnership and ECRAN, and these patient involvement projects – INVOLVE, European Community Advisory Board (ECAB) and Medicines for Children Reasearch Network.

Results of SINPHONIE project presented

On April 23 results of the SINPHONIE project were presented to stakeholders at the European Parliament. The project is focused on monitoring indoor air quality in schools and kindergartens in Europe where the ventilation is very often inadequate. This causes increased risk for asthma and other respiratory diseases among pupils and is therefore of particular interest to EFA. Thanks to the research carried out in hundreds of school buildings all around Europe, scientists can now recommend concrete policy actions to be taken.

At the event hosted by MEPs Elisabetta Gardini and Erik Banki researchers showed that children may experience asthma symptoms, stress and attention problems at schools and that their symptoms improved at home. This was proven to be a consequence of the excessive presence of PM2.5, benzene and other pollutants in the indoor air they breathe. The project members drafted guidelines that should be adopted by policy makers and adapted at the national levels. The guidelines will be available for the public and policy makers soon.

EFA was represented by Executive Officer Susanna Palkonen and by EU Policy Officer Roberta Savli who participated in the panel discussion as a member of the Executive Committee of the Health and Environment Alliance (HEAL).

The panel discussion was preceded with the intervention of the Vice-President of the European Parliament, Mr. Pittella who supports prioritising IAQ. It was emphasised that the EU needs to develop a strategy on indoor air quality as a comprehensive topic that encompasses several other EU policies and initiatives and EFA strongly agrees.

More information about the project can be found here.

EFA took part in the MovingLife Stakeholders Conference 

On April 18 EFA’s Susanna Palkonen attended on behalf of the European Patients’ Forum (EPF) the MovingLife Stakeholders Conference in Brussels. The MovingLife project, supported by the EC Directorate General Connect, aims at delivering roadmaps for technical research, implementation and wider acceptance of mobile mHealth solutions among patients, healthcare professionals and policy makers in Europe.

Participants from various domains were able to discuss developments in the perception of mHealth, legal and policy framework in the EU, technological problems and also patients’ perspective. At the conference Susanna presented on behalf of the European Patients’ Forum (EPF) on patients’ perspective of mobile health, based on the results of the EPF Chain of Trust Project.

The Chain of Trust project started off in January 2011 and is focused on raising awareness and acceptance of telehealth end users. Results of the project can be also applied to the mHealth environment. According to EPF telehealth could improve quality, continuity and accessibility of healthcare and reduce health inequalities by reaching patients living in underserved areas. However, it is important to note that deployment of mobile health has to be user driven not technology driven.

The main key drivers for users’ acceptance of mobile health were thus identified as follows: telehealth should increase mutual trust between patients and health professionals, it needs to deliver benefits and add value to users in relation to solely conventional healthcare and it has to guarantee the same safety and reliability standard as conventional health services.

EPF’s presentation on the Chain of Trust project is now being integrated together with other comments and recommendations from the conference into the consolidated roadmap of the MovingLife Project. An action plan for future widespread of mHealth will be published shortly.

If you want to learn more about the Chain of Trust project, check out this website or watch the video on-line.

More meetings

EFA representatives also attended the EFPHIA Think Tank event, which was devoted to a dialogue between patients’ organisations and the pharmaceutical industry on EU policy issues in the area of health and innovative medical research. At the end of the month EFA president Breda Flood took part in a council meeting of the European Lung Foundation in Zurich and EFA executive officer Susanna Palkonen represented patients at the GSK’s (GlaxoSmithKline) European Health Advisory Board meeting in London.

The European Medicines Agency (EMA) has introduced a new webpage related to medicines under additional monitoring. Patients and healthcare professionals can always check whether a certain medicine is subject to additional control on the Agency’s website which will be reviewed and updated every month.

Medicines under additional monitoring will have a black inverted triangle displayed in the package leaflet together with an informative text explaining what it means. The black triangle signifies that a medicine is being monitored even more closely than other medicines on the EU market. This intense process doesn’t mean that the medicine is dangerous, but it requires additional monitoring because it is new or there might not be enough information on its long-term use.

The triangle will be introduced in the medicines package leaflet on the 1 September 2013. The concept of additional monitoring was introduced by the new EU laws on the safety-monitoring of medicines, the pharmacovigilance legislation, which started to come into effect in July 2012. A black symbol will encourage patients and healthcare professionals to report suspected adverse events and the provisional list of medicines is already available here. This information is available in all EU languages.

For more information check the EMA webpage.

EMA glossary introduced

The European Medicines Agency (EMA) prepared a new website of a glossary. The glossary gives definition for the main regulatory terms used on this website and in the EMA documents.

The glossary is easy to navigate, simply by clicking on a letter the user is able to see a list of terms beginning with that letter. “The definitions in this glossary have been developed to help this website’s users understand regulatory terminology. Definitions may differ from those given in European Union legislation,” EMA states. 

For more information check the EMA website.

In the last two months EFA sent more than 50 questions in different European languages to the European Aviation safety Agency (EASA) regarding the use of oxygen on planes. EASA is now willing to help EFA to address this issue. However, since the organisation deals mainly with safety issues, EFA will have to address the European Commission responsible for rights of passengers. In the meantime, EFA continues collecting stories from patients travelling with oxygen in European countries for a brochure which will provide insight on what to do and how aircraft staff members can be prepared for passengers travelling with oxygen. All patients interested in submitting their stories should send them to the EFA Fundraising and Programme Officer Antje Fink-Wagner (antje.finkwagner@efanet.org) and to EFA Membership and Programme Officer (david.brennan@efanet.org).

EFA COPD Project – Minimum Standards for COPD Care for Europe!

EFA COPD working group has finished preparation of a new questionnaire for EFA Members. The questionnaire aim at outlining the guidelines for minimum standardization of care for COPD patients in Europe from patient perspective and will be sent out to EFA Members as soon as possible. The EFA COPD paper, prepared in collaboration with the International Primary Care Respiratory Group (IPCRG), “Real world burden of COPD: A cross-sectional retrospective analysis focusing on employed and ‘not in paid employment’ patients in Europe” with data from 5 EU countries was submitted to the Journal of Health and Productivity and is waiting for approval. EFA asked MEPs to sign the foreword of the publication and is now trying to secure more signatures.

EFA represented patients’ interests at the AirPROM AGM in Barcelona

In April 2013 EFA representatives attended the AirPROM Annual General Meeting in Barcelona. This EU funded project aims at developing mathematical models of lungs which will eventually lead to personalised treatment of asthma and COPD patients. With the AGM 2013 AirPROM has entered in its 3rd year and all members of the project had the opportunity to meet again and discuss developments and future targets.

AirPROM project has brought together people from different professional backgrounds (scientists, doctors, IT professionals and patients’ representative) who are organised in 9 work packages (WPs). The main aim of the meeting was to update participants on the progress within all working groups, deepen the integration and collaboration among all teams and identify future objectives.

According to leaders of respective work packages, AirPROM project has collected substantial datasets from various clinical trials. Researchers now have to align data across all existing cohorts and develop validated predictive models of airways. The main future task thus is to integrate all WPs, develop validated models which will eventually lead to personalised treatment of patients and show success of the project through publications and knowledge platforms.

At the meeting clinical trials including Anti-Eosinophils Study and Thermoplasty Study were also discussed.  Interestingly enough, the research results show that people with mild asthma and patients with severe asthma have similar lung function. Even though severe asthmatics feel worse, models don’t show decreased lung function.

The involvement of EFA in AirPROM includes representation of patients with asthma and COPD, preparation of dissemination materials and raising awareness of the project. The progress of AirPROM will also be discussed at the ERS Congress which is being prepared in collaboration with EFA.

You can find more information about AirPROM project here.

This year’s “Meet and Greet the European Union Institutions” training combines basic and advanced training to participants. All members that are willing to participate should fill in the registration form by June, 10^th 2013. We will confirm your participation by then as we only have 12 places available that will be allocated on the first came, first served basis taking into account the geographical balance to represent as much EFA members as possible (one representative per organisation). As you know, EFA will reimburse the accommodation and travel expenses.

The UK: Allergy awareness week in the UK 

Allergy UK ran the Allergy Awareness week in April. This annual event aimed at drawing attention to the plight of the allergy sufferers. The organisation tried to make allergies visible to highlight the need for improved allergy services and raise money to fund all-important Allergy nurses. “We want to see the day when everyone in the UK with an allergy or intolerance receives the diagnosis and treatment they deserve. Our Nurses Appeal will begin to make that happen. We need to raise a minimum £1million so that, with your help and support, we can begin to make this significant difference,” the organisation explains. To get more information about the project, check this website.

Switzerland: Pollen and allergy Website/PollenApp 

aha! Swiss Allergy Centre and MeteoSchweiz set up a joint venture to launch a website and smart phone applications that provide regional pollen measurements, the latest weather data and forecasts of pollen counts that enable hay fever sufferers to assess the situation accurately. Tips on prevention and more detailed information help to prevent symptoms.

The app features:

• 14 pollen monitoring stations with information about pollen levels
• Pollen forecast for individual parts of the country
• Start of flowering forecast
• Pollen count display on the Swiss map with GPS location
• 5-day weather forecast
• Information about allergenic plants
• Practical guide to coping with allergies

aha! Swiss Allergy Centre has, in collaboration with partners, further developed this application to provide an electronic symptoms diary. The features of the pollen app are completed by an interactive e-symptoms diary, which helps allergy and asthma sufferers to observe, quantify and document their symptoms easily. In a daily test run-through, the relevant symptoms are noted and any medication taken and lifestyle habits are recorded. In addition to the test questions, photographs of the skin can be documented, for example in the case of neurodermatitis (atopic dermatitis).

The data is accessible to sufferers in convenient graphical form. Before a consultation, a compilation of the symptom data can be sent to the treating physician at the touch of a button. This overview is supplemented by recorded data on pollen count, air pollution and rainfall to provide the doctor with additional information. The app supports diagnostics and communication between affected persons and their doctors.

France: EFA Members commemorate the 7^th annual French Allergy Day 

The association Asthme & Allergies arranged meetings for youths and their families starting on the 19^th of March 2013 to provide an opportunity for them to educate themselves about and discuss allergies. This chronic disease, the most common among adolescents and youths, impacts their quality of life, performances in school as well as social and personal lifestyles. The 7^th annual French Allergy Day was an occasion to give adolescents the tools they need to take control of their allergy, whether it is of the food, respiratory or skin contact variety. They were encouraged to be more autonomous and independent in daily management of their allergies for the future. The family members and school staff who interacted with allergic youths were also aware of the importance of supporting and empowering the youths in the care of their pathology. From the 19^th of March through the 30^th of June, “Allergie, j’agis!” or “Allergy, I act!,” was the platform for a national mobilisation effort targeting young people to diagnose their allergies earlier and treat themselves so as to move forwards without dragging their feet today and tomorrow.

On March 19, 2013, allergic youths could interact directly with allergists on www.allergiejagis.org, the first information site dedicated to allergy and through the social networks of Asthme & Allergies. In addition, from March through June, allergy kits with pedagogic information will be disseminated to organisations and places frequented by French adolescents and youths. Allergists and pharmacists will also provide brochures with similar information in their offices and in pharmacies. To close their actions, from June 28^th – 30^th the Association Asthme & Allergies, in collaboration with allergists, will have a stand for prevention and information within the health village at the Solidays Festival (Paris).

French Allergy Day is organised through an initiative of the Association Asthme & Allergies supported by the Stallergenes laboratory and in partnership with the French Association for the Promotion of Health and School (AFPSSU), the Association of School Parents and Educaters of Ile-de-France (EPE-IDF), Wire Health Youth (FSJ), the National Association for Continuing Education in Allergology (ANAFORCAL), the French Society of Allergology (SFA), the National Association of Allergists (SYFAL), the French Association for the Prevention of Allergies (AFPRAL), the National Aerobiological Monitoring Network (RNSA), the French Committee of Allergy Observation (CFOA) and with the sponsorship of the World Allergy Organisation (WAO).

France: International Website “Asthma Museum” to Be Ready for World Asthma Day

The association Respirlibre (association of patients speaking different languages) in partnership with FFAAIR launched an international website called the “Asthma Museum”. The website serves as a new, unique tool for patient education and a new means for the transformation of asthma’s public image.

The website includes the history of asthma science, inhaler development, interesting forms of patient education (Asthma carnival) and dialogues between fictional characters, M. Asthmidge and Dr. Building, who discuss different subjects of asthma management. There are also pages devoted to home ecology to foster asthma-friendly environments.

Although the website is presently available only in French and Russian, an English version will also be developed in the future. To learn more about the museum, visit this website

Spain: FENAER Commemorates World Allergy Week 2013 in Jaén

The President of the World Allergy Organisation (WAO) and the President of the Communications Counsel for the WAO, warmly welcomed the arrival of the interested parties to the World Allergy Week 2013. The theme of this year is: “Food Allergy, an increasing world health problem” and there are many ways in which member societies can participate to help promote awareness of allergic diseases at the local, regional and national levels.

The WAO calls on societies, associations and federations to collaborate in the global effort of the World Allergy Week highlighting the increasing global health problem of food allergy. This was done by providing information on the prevalence of allergy and explaining the need for better education and patient care services.

In complimenting this recommendation of the WAO, the National Federation of Respiratory Diseases Associations (FENAER) of Spain celebrated World Allergy Week 2013 in Jaén, being the Spanish province with the most people affected by allergy (28%), because they are affected by the combination of food allergy and allergy to olive tree pollen.

ALERJA, as a member of FENAER, was the organiser of this event in the province of Jaén as it is within the organisation’s scope. ALERJA organised events in the first week of April with a programme of activities from the 2^nd - 6^th of April according to the following calendar:

Tuesday April 2^nd

Presentation of Multiple Chemicals Sensitivity (MCS) syndrome in Huelma (Jaén). Plenary sessions in the town hall of Huelma. At 17h30 the acting President of ALERJA and FENAER, Mª Victoria Palomares, presented her experiences as a patient affected by this disease.

Wednesday April 3rd

Conference about “Allergy in Jaén” by Dr. D. Manuel Alcántara, allergologist from the City of Jaén Hospital in cooperation with the President of ALERJA and FENAER.

Thursday April 4th

Information booth in the hall of the Diagnostics Centre informed all people interested in learning about allergy and in the activities of ALERJA to improve the quality of life for people living with allergy. The people interested to become part of ALERJA, or had any questions or doubts about their disease, could do so at the table. Informative brochures were distributed and people were greeted by members of ALERJA and allergologists from the City of Jaén Hospital.

Friday April 5th

Commemoration of World Allergy Week in Colegio Peñamefecit with allergic students from 5 different school districts. The students enjoyed a special day with the a performance of a volunteer group sponsored by ALERJA who were telling stories, globoflexia, face painting, games and dances. Guests in attendance included the education delegate, Dr. Alcántara and the President of ALERJA and FENAER.

Saturday April 6^th

Training Day in sports and leisure for volunteers from the University of Jaén.

In the morning they developed the theoretical portion in which they took part with the acting President of ALERJA and FENAER, who presented both the association and federation, as well as two doctors specialising in the field of Allergology and Physical Education and Sports, an allergic patient and the relative of an allergic student.

In the afternoon the practical portion took place in which the volunteers were involved in workshops for sports and leisure with allergic children, directed by Professor Juan A. Párraga, Director and Coordinator of the Department of Physical Education.

The objective of this day is to recruit university volunteers to take part in sports and leisure activities during the recesses of allergic children in the time of pollenisation for olive trees in their respective schools. This would take place indoors because the students could not go outdoors with the rest of their classmates because of their allergic illness.

Ireland: Asthma Society welcomes UK’s NICE decision on Omalizumab

Asthma Society of Ireland has welcomed the decision by the National Institute for Clinical Excellence (NICE) in the UK to recommend a treatment for severe allergic asthma for both adults and children. The Asthma Society of Ireland, the national charity which provides services to thousands of people with asthma every year, is joining with leading respiratory experts in Ireland to call for equitable access to this treatment for those most in need in Ireland.

The UK drugs watchdog has made omalizumab (Xolair) accessible across the UK, concluding that it is a clinically effective and innovative therapy, and an effective use of NHS resources1.

Ireland has the fourth highest prevalence of asthma worldwide and 470,000 people in Ireland suffer with the condition2, meaning everyone in Ireland knows someone who has asthma. In Ireland today, 1 in 10 adults and 1 in 5 children under 14 suffer from asthma. Asthma cannot be cured, but it can be managed. Yet nearly 60% of Irish asthma sufferers do not have their asthma under control, and more than one person a week dies from asthma in Ireland.

The Asthma Society of Ireland is advocating for equitable access to health services for all asthma patients in 2013. Xolair was licensed for use in Ireland in 2005, but is not reimbursable under any government schemes. This means that access to the medication is extremely limited. Patients must rely on the generosity of hospital pharmacy budgets, meaning access to this life changing treatment is based on geographic location.

An estimated 450 people in Ireland are affected by severe allergic asthma and could potentially benefit from it. Xolair is a recognised treatment for severe allergic asthma in the international best practice GINA Guidelines and is widely available in many other EU countries.

In Ireland, only about 50% of patients with severe allergic asthma eligible for treatment are currently receiving Xolair3. The small group of patients with severe allergic asthma have uncontrolled symptoms, despite high doses of steroids and have high hospital admission rates, long lengths of stay and poor quality of life.Patients treated with long-term high-dose steroids are at high risk of developing serious co-morbidities such as diabetes and osteoporosis.

For more information, visit this website.

It is estimated that more than 24 % adults (80 million) and up to 40 % children in Europe are suffering from various allergies triggered and aggravated in large measure by airborne allergenic pollens. However, in contrast to air pollutants, there is no obligation to monitor the pollen situation in the European Union and the European Commission has no intention to make such a monitoring mandatory.

Following the written question on pollen levels monitoring asked by Italian MEP Andrea Zanoni (ALDE) in February 2013, Commissioner for Environment Janez Potocnik stated that the Commission has no plans to widen EU air quality policy in order to account for pollen monitoring, information dissemination and financing of such activities. “The European Commission is not planning on addressing the monitoring of pollen or the dissemination of information of pollen levels to the public and health care professionals in the Clean Air For Europe Programme,” the Commissioner for Environment answered.

The reason behind it is, according to Commissioner Potocnik, that environmental protection legislation excludes pollen emissions because they are not man-made and hence cannot be reduced by Member State action (read the Commission’s reply here).

In many Member States pollen level monitoring and reporting is based solely on voluntary work and receives no financial support from governments. Even though real-time information on allergenic pollen might help people with respiratory diseases travelling around Europe to easily take preventive measures, the Commission has not been able to identify any current funding programme that would fit the scope of pollen monitoring and information dissemination.

In an increasingly integrated Europe, real-time pollen monitoring is of great importance. EFA finds it crucial for people with allergy and asthmato secure continuation of the work and clarification of the funding of pollen information and forecasting. EFA will therefore continue its actions to advocate the necessity of legislative measures that need to be taken on EU level.

For more information check EFA position paper on pollen monitoring in Europe or visit our website.

Information on pollen

The website monitoring pollen in the European Union is currently under construction. To learn more about situation in your country, visit websites of our members and get the real-time information on pollen.

Webinar on ATOPICA project

EFA took part in the first webinar organised in the framework of the ATOPICA project on the 26th of April. The project aims to understand how global and regional climate, land use and air quality changes will impact human health.

Presentations were given on climate change in Europe and how this affects the spread of pollen and, therefore, affects the life of allergic people in Europe. Discussions were then focused on the need to have monitoring systems of pollen throughout Europe.

The project will have a stand in the Green Week, where it will raise the awareness of policy-makers on such an important issue.

The European Health report 2012 describing the overall improvements in health in the WHO European region has now been made available on-line. The general report, published every three years, aims to support and provide the evidence base for the strategic objectives and priorities of Health 2020, the new European policy framework to support actions across government and society for health and wellbeing, endorsed in 2012 by European Member States. Providing policy-makers and public health professionals with epidemiological evidence base, the report also outlines the tools and methods to measure progress in health. Special attention is paid to well-being, one of the pivotal aspects of Health 2020 which has served as a marker of progress in health in the region. To access the report, please click here.

HealthVent Guidelines – policy recommendations on ventilation

Ventilation guidelines for non-industrial buildings were developed between 2010 and 2013 as the main objective of the HealthVent project in which EFA partners. The first results of the project, presented on February 20, 2013 in the EP at the event “Indoor Air Quality and its Effects on Health: a Presentation of the Guidelines for Health-Based Ventilation in Europe”, lay down a set of concrete policy actions to be taken in order to improve quality of indoor air:

1)      both indoor and outdoor pollution should be tackled and WHO guidelines enforced;

2)      tobacco smoking should be banned in all public places;

3)      green paper on IAQ should be urgently prepared by the European Commission;

4)      the currently developed 7^th EAP should put more emphasis on air quality and provide the basis for further action on IAQ by 2020;

5)      coordinated actions should be launched towards  both outdoor and indoor air on the principle that it is the “same air” that affects human health.

The report of the event has now been published and is available here.

Legislative texts round-up

Clinical trials: The proposed revision of the clinical trials regulation was discussed in the European Parliament in the committee responsible for the dossier (ENVI), as well as for the second opinion (IMCO). In April, the ENVI committee will vote on the report of the file’s rapporteur, MEP Glenis Willmott. EFA is supporting the European Patients Forum (EPF) position statement on this issue, emphasising the need to ensure that patients involvement is strengthened and their safety guaranteed.

Medical devices: EFA has also kept on following the medical devices regulation, which was discussed in March at the ENVI and IMCO committee of the European Parliament. We are monitoring this topic very closely to ensure that patients’ safety and involvement are enhanced and transparency strengthened. As a next step, EFA will thus analyse the report prepared by MEPs and propose amendments. Click here for more information on the dossier.

Seventh environment action programme: In collaboration with the Health and Environment Alliance (HEAL), EFA has carried on working on the Commission’s proposal for a seventh environment action programme. The proposal was discussed at the ENVI committee of the European Parliament in March and is going to be voted on at the committee in April. EFA has been in contact with responsible MEPs to strengthen the proposal in terms of air pollution and climate change provisions and to guarantee that people with asthma, allergy and COPD have the best quality of life possible.

Tobacco products directive: Together with other NGOs active in the field of tobacco control, EFA has been advocating for a strengthened directive to prevent young people from starting to smoke, help smokers to quit and in general safeguard the health of European citizens. EFA has also been monitoring the discussion on the proposal for a revision of the tobacco products directive in the ENVI committee (responsible for the file) and in the IMCO (responsible for an opinion on the file) in the European Parliament. Click here for more information on the dossier.

Our funding partners meeting also took place on the 11 March at EFA Office in Brussels. Every year, EFA invites its funders in a transparent way to meet with the EFA team and the board and discuss progress. For EFA, its also an opportunity to hear from sponsors on their views on supporting EFA in our mission. EFA sincerely thanks all our funding partners for their contribution into our core as well as project funding and we count on your support.

EFA presented with U-BIOPRED at the “Applying open innovation to bring personalized medicine to new disease areas” workshop

EFA President Breda Flood was among the speakers at the workshop on Applying open innovation to bring personalised medicine to new disease areas, organised by the Innovative Medicines Initiative (IMI) in March in Dublin. Her presentation on “A personalised approach to severe asthma” focused on development in the area of asthma diagnosis and treatment.

Flood, being an asthma patient herself, pointed out that we still don’t have good enough understanding of the different phenotypes within the severe asthma population. “It means that many people do not have precise enough diagnosis, there are not effective enough treatments for them and no possibility for a truly individual management plan,” EFA president explained. There is also a lack of biomarkers that would enable us to effectively track disease progression or the impact of a novel therapy on the disease in clinical studies.

According to Flood, the U-BIOPRED project used a sophisticated and novel integrated “systems medicine” approach to help us characterise patients with different types of severe asthma more precisely. “Severe asthma is not a single disease and we have to take in account that individual patients are clinically very different,” she stressed.

EFA has provided and continues to provide patient’s perspective on living with severe asthma within and outside the consortium. “EFA has also provided independent patients and carers for the Ethics Board and the Safety Monitoring Board, and has nominated patients for the Patient Input platform. Communication at all levels has been a key to the progress of recruitment,” EFA president said.

All three speakers at the IMI workshop spoke about their involvement in the project from their own perspective. Flood presented about being involved as an asthma patient, professor Lars Klareskog spoke about Rheumatology from the academic perspective, and Bernd Stowasser added his remarks of Diabetes treatment from the business point of view. The following debate gave participants the opportunity to discuss how the IMI projects’ approach to develop personalised medicines could be extended to other disease areas.

The IMI workshop was part of the event on Innovation and Patient Access to Personalised Medicine organised by EAPM. The meeting brought together researchers, patients, physicians, regulators and politicians. The goal of the event was to encourage decision makers and health advocates to support a life sciences research and innovation PPP under Horizon 2020.

For more information about the workshop, please see this link. You can also find the programme of the conference here and view Flood’s presentation here.

EFA attended the 25^th Global Forum for Therapeutic Innovation & Regulatory Science (DIA) Euromeeting in Amsterdam

EFA president Breda Flood travelled with patient fellowship to the Netherlands in March 2013 to take part in the 25^th Euromeeting organised by DIA. This global forum featured over 110 sessions and attracted more than 3,000 professionals involved in the development of medicines from more than 50 countries. The meeting, accompanied by more than 200 exhibitors, posed a unique opportunity for active involvement of patients’ organisations and encouraged their closer cooperation with students’ organisations.

The scope of the presentations covered pharmacovigilance and regulatory affairs for medical products and medical devices, R&D and clinical trials. Experts and authorities from the European Medicines Agency (EMA), the European Commission (EC), the FDA and other regulatory agencies mainly presented the experience gathered after the implementation of the new Pharmacovigilance legislative framework.

The opening plenary session was devoted to the Public/Private Partnership: ‘Working together in the interest of patients’ and the panel members focused mainly on the positive aspects and concerns of these initiatives. At the meeting, participants could also attend several tutorials aimed to improve their knowledge on topics such as the implementation of the new pharmacovigilance legislation, analysis of safety data from clinical trials, practical work with variations under the revised regulation or introduction to EU medical device regulation.

EFA representative Breda Flood was especially involved in the “DIA Fellowships meeting – patients’ representatives and students” which took part on March 6^th, 2013. “Patients and Students were encouraged to mix and engage in informal round table discussions and then feedback to the whole group,” Flood described.  After an open discussion among three main working groups, patients’ and students’ organisations identified common areas where they could foster their cooperation (e.g. internships for pharmacy students) and explore potential room for collaboration in awareness raising programmes. Breda also took part in a workshop on medical devices as EFA is following the EC proposal for a regulation on this topic closely.

More information about the meeting can be found here.

EFA Participates in European Public Health Alliance (EPHA) Social Media Training Session

On March 5^th, 2013 EFA’s Membership and Programme Officer David Brennan attended the EPHA event in Brussels featuring social media expert and trainer Jon Worth.  The objective of the session was to explain the current social media environment for policy advocacy in EU politics, specifically focusing on EU institutions in Brussels. His training included positive and negative case studies for social media advocacy, basics for social media uses within a work environment and advice on how to integrate different tools for social media into creating a holistic social media strategy (SMS).

The session also provided interesting facts, such as the fact Facebook is the only meaningful social media tool available in countries where it arrived first. If other social media platforms preceded Facebook in a specific national context, the use of other tools is as a result much higher. For instance, in the Netherlands, the social media tool with the highest use is Twitter, not Facebook. Facebook in addition appears to reach a broader audience, for instance, because although 87% of the American population may be aware of Twitter’s existence, only 10% of the population uses it. As a result, Facebook is a better tool for reaching ‘the masses’ while Twitter is much more useful for targeting individuals.

As EFA is currently developing its own SMS, the session was very well timed and provided valuable information and tips for the integration of social media tools into its work. In particular, the central role of the new EFA website will tie together other outlets like Facebook, Twitter, LinkedIn, Google+ and YouTube in what is known as the ‘Hub-and-Spoke’ approach, where social media tools interact with the webpage and vice versa. Mr. Worth also provided practical advice on how to actively monitor followers on Twitter when there are high volumes of information and also target specific policymakers and actors in the Brussels advocacy environment.