EFA European Federation of Allergy and Airways Diseases Patients' Associations

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ReportontheEFARespiratoryAllergyBookLaunchEvent

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) successfully heldits launch event on November 22, 2011 at the European Parliament in Brussels, BE for the release of itsnew Respiratory Allergy Book. The publication provides new data on respiratory allergies, which arecurrently Europe’s most common and underestimated chronic disease. Data was collected from acrossEurope, through the cooperation and participation of 18 EFA member organizations, which presentedloopholes and challenges in the diagnosis and management of respiratory allergies, confirming theworrying estimation that 1 in 2 Europeans may suffer from an allergy by 2015. The event was co-hostedby Members of European Parliament (MEPs) Miss Elisabetta Gardini (EPP, Italy) and Miss Nessa Childers(S&D, Ireland). Mr. Michael Hübel from the European Commission as well as the representatives fromthe Polish Presidency participated along with patients and other relevant representatives of NGOs andthe medical community.

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ABreathofFreshAir

Call to Action: Raise Awareness,Relieve the BurdenThe event began with an introduction of EFAPresident Breda Flood, who overviewed EFAinitiatives for addressing respiratory allergies inEurope. The publication of the new bookrepresents a milestone which marks thecommencement of a four year allergy awarenessproject.

The launch event for the book at hand,represented a vital opportunity for bringingtogether policymakers, patients, medical expertsand other stakeholders to address their concernsfor respiratory allergies. The book itself seeks tobring better awareness on the burden ofrespiratory allergies and to grant greater access toquality care and prevention for patients.

Mrs. Flood underscored the importance of the“Call to Action” contained in the book, whichoutlines six clear objectives for ‘relieving theburden’ of respiratory allergies on societies.

The speakers throughout the event added valueto the Call to Action by offering recommendationson one or more of the following objectives:

“1) Increase the politicalrecognition of respiratory allergiesas a real and serious disease;

2) Promote national programmeson respiratory allergies;

3) Prioritize the management andcontrol of respiratory allergies;

4) Promote training in allergy forhealthcare professionals toimprove accurate and earlydiagnosis;

5) Align healthcare andreimbursement policies to supportappropriate disease management;

6) Improve indoor air quality

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An Unsettling Trend: the IncreasingPrevalence of Respiratory Allergiesacross European CountriesThe editor and former EFA President Dr. ErkkaValovirta presented the key findings containedwithin EFA’s book on respiratory allergies. Therationale behind the EFA Allergy Awareness Projectis to address the growing likelihood that over halfof European citizens could have chronic allergicsymptoms by 2015. Dr. Valovirta reaffirmed bookfindings that there is low awareness at all levels,including among the patients themselves, and ageneral deficiency for understanding both allergiesand asthma as serious public health problems.Information in the book was collected from EFAmembers (i.e. patients’ associations) representing18 European countries and 414 million people inEurope.

Dr. Valovirta emphasized the “One Airway-OneDisease” premise, which acknowledges rhinitis toprecede the subsequent development of asthma ina patient. As a result, there are high costs to theprevalence of respiratory allergies throughoutEurope, as “every fourth working patient took timeoff due to allergic rhinitis” and “every thirdstudying patient took time off school” as the resultof the same chronic condition. Dr. Valovirtaemphasized inflammation as the key mechanismbehind symptoms for chronic respiratory allergies.He noted that while there is no primary means forthe prevention of respiratory allergies, plenty ofsteps can be taken to successfully reduce thenumber and frequency of severe exacerbationsamong patients.

MEP Elisabetta Gardini expressed concern overhow “respiratory allergies remain a neglecteddisease.” She explicitly endorsed EFA’s campaignfor awareness-raising with the support of theEuropean Parliament while encouraging otherspresent to “ensure allergies have a place in the2014-2020 Health programme.” Together suchmeasures could provide a means for counteringthe most recent trend and permit the treatmentof respiratory allergies as a legitimate publichealth concern across EU member states.

In addressing the priority on respiratory allergieson behalf of the Polish Presidency, ProfessorBolesław Samoliński presented the PolishPresidency prioritization on chronic respiratorydiseases, which will lead to the adoption ofCouncil Conclusions on 2 December. He expressedconcern for increases in the frequency of allergyprevalence across Poland and other neighboringcountries of Central Europe. Additionally, heshared alarming statistics confirming a 14%increase in the number of children (6-7 years old)with asthma in Poland, the highest increase inEurope. The Polish Presidency’s presentationspecifically described the necessity to focus uponthe prevention and management of allergies andasthma among children because their health isone of the risk factors in the unhealthy ageingacross societies.

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Addressing the Challenges ofRespiratory Allergies at theEuropean UnionThe EU policymakers at the event collectivelyprovided for a strong presence, representing theEuropean Parliament, European Commission andPolish Presidency. Mr. Michael Hübel, Head ofUnit SANCO (C4), articulated that a challenge forthe effective raising of awareness throughoutEurope will be the ability of various respondentsto contribute towards forming a cohesiveresponse. In this way, the campaign to promotechronic respiratory diseases, including respiratoryallergies, can be far more effective across alllevels. However, such a process could beginthrough sharing consistent information acrosscountries.

Mr. Hübel acknowledged the significance of thedata collected by EFA in 18 Member States andthe Call to Action points as they are “particularlyrelevant” in addressing socio-economicinequalities in healthcare. However, he also notedthat the Call to Action points for respiratoryallergies are “Member States responsibility, butthe Commission has a role to play in addressingthe risk factors, such as tobacco control andindoor/outdoor air quality.” Of particularrelevance is the work performed betweendifferent Commission sectors and the WorldHealth Organization (WHO) to mitigate tobaccosmoke and support living healthy lifestyles.

During the event, the representatives from theCommission and Polish Presidency bothhighlighted the importance of the adoption of thePresidency Conclusions on 2 December, which willbring a political recognition on the burden ofchronic respiratory diseases. By addressing therising trend of chronic respiratory diseases, andrespiratory allergies in particular, the muchanticipated Presidency Conclusions will provide acrucial step towards promoting awareness in theboth EU institutions and among Europeancountries. In this way, political support can begenerated to coincide with ongoing efforts at thenational and local levels by governments, patientassociations and other actors.

The importance of strengthening both Europeanand national awareness promotion for improvingindoor air quality was addressed specifically byMEP Nessa Childers. She attributes the decision ofIreland to be the first nation in Europe to bantobacco smoking indoors as being “an absoluteliberation” to her personal life. She confessed “itwould have not been possible for me to become apolitician without this ban. A smoke freeenvironment is a huge issue every country shouldbe dealing with.”

According to Ms. Childers, even within theEuropean Parliament, MEPs often struggle with alack of awareness of rhinitis, as they oftenoverlook their conditions, which tend to worsenwith air travel. To her surprise, indoor air qualityin the Parliament buildings in Brussels andStrasbourg remains inadequately poor.

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Life with Respiratory Allergies: thePatient’s PerspectiveIn addition to remarks from MEP Childers of herown personal experience with poor indoor airquality and its effects upon respiratory allergies,two additional patient testimonies providedsignificant insight into life coping with respiratoryallergies for all attendees.

Joanna Bottema agreed to travel from theNetherlands to participate in the event and sharelessons learned from her personal experiences. Asan active member of her local community, sheexpressed concerns with the deterioration ofindoor air quality. The combined forces ofinadequate climate control and increasing levelsof fragrance use generate indoor environments oflow compatibility with patients who haverespiratory allergies.

Although the ban of smoking indoors in someEuropean countries shows a positive trend, thepatients still are at a disadvantage as they must bevery attentive towards ingredients of almost allpurchases on a daily basis. According to Mrs.Bottema, there are two ways to address allergiesand asthma in public places. First, it is to improveindoor air quality through European levelregulations on retail items, such as householdproducts, with a greater potential to cause allergicexacerbations.

The other way is to improve healthcare forairways diseases, assuring early diagnosis andunified treatment processes, which are currentlyfragmented.

The second patient testimony came from SannaKukka on the behalf of her son Alex. Herexperience in seeking the right diagnosis andtreatment for her young son within the Belgianhealthcare system clearly demonstrates a greaternecessity for respiratory allergy awareness evenamong primary care physicians. When Alex firstbegan to experience severe allergic symptoms,Mrs. Kukka was told Alex was allergic to milk andshould avoid it at all costs. However, hissymptoms never disappeared or showed any signsof improvement following treatments.

After being re-evaluated to possess a respiratoryallergy and the prescription of appropriatemedications, Mrs. Kukka has witnessed a hugechange with Alex’s life. Thanks to correctmedications and an accurate diagnosis, Alex isable to live a much more normal life as a smallchild. The story of Alex provides an inspirationalmessage, which appropriately highlights theimportance and relevance of the numerousrecommendations the panel of respiratory allergyexperts presented at the event.

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SharingExpertise

Partners of the RespiratoryAllergies ProjectIn order to contribute additional expertise to theevent, the EFA partners of the respiratory allergiesproject were invited to make presentations toshow solidarity on the subject. Participatingorganizations included representatives from ARIA,ERS, EAACI, GAL²EN and IPCRG.1

Professor Torsten Zuberbier, the SecretaryGeneral of GAL²EN, presented its project of a‘pan-European surveillance system of allergy andasthma,’ which can track increasing intensities ofallergy triggers, such as Ambrosia pollen, acrossEurope. Such a system is vital to identify trendsand addressing their potential impact upon publichealth before they become serious problems.GAL²EN calculated the estimated costs ofuntreated patients amounted to a reduction inperformance at work by 10-30%, which is amonetary loss of €24-72 per day. This is quite acontrast compared to the cost of treatment,which amounts to €1 per day. This evidencehighlights the high burden of allergies oneconomies.

1See Acknowledgements on Page 8 for clarifications of acronyms

Dr. Jean Bousquet, representing ARIA, describedthe Call to Action as “completely in line” with theWorld Health Organization objectives establishedfor 2011, the Year of Respiratory and AllergyDiseases. With over 1 billion patients globally, theaudience was reminded that task of raisingawareness of these underdiagnosed andundertreated chronic diseases and conditions arenot confined to continental Europe.

For the benefit of patients, Dr. Bousquet argued,an appropriate diagnosis is the first step to controland effective management afterwards allowspatients to keep control. Dr. Dermot Ryan, fromIPCRG, reiterated the necessity of ensuringtreatment does not harm patients and stressedthey must receive proper instructions for effectivetreatments. Personalized ‘action plans’ were alsohighly recommended to allow patients to reducemedication intake when necessary and keepcontrol of the disease. Collective agreementamong the experts present indicated all doctorsand patients must increase cohesive awareness.

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The trend of increasing prevalence for respiratoryallergies and chronic diseases was a universalcause for concern among the experts as well.Professor Francesco Blasi, the President elect ofERS, outlined the potential factors driving thistrend. The list was extensive, ranging from gene-environment interactions to second hand smokeand occupational exposure for adults.

An increase in allergic rhinitis of greater than 5%has been observed in the last 5 years and such atrend continuing is particularly concerning as canresult in 50% of children having the condition by2020. Additionally, the influx of migrants from afarin many European countries can continue toincrease the population of patients sensitive torespiratory allergies. Their new homes,neighborhoods and workplaces can triggerrespiratory allergies as their bodies are exposed toa new environment.

Pascal Demoly and Moises Calderon from theEAACI contributed to the panel discussion by re-emphasizing the direct impacts upon quality of lifeassociated with allergic diseases among Europeanpatients. These included decreasing efficiency atwork for adults, decreasing performance, andincreasing absenteeism at school for children. Thefailure to address allergic diseases clearly points toboth a rise in healthcare costs while patientscontinue to experience more health-relatedimpairments. The EAACI representatives pointedtowards varying reimbursement policies acrossEurope as a worrisome representation of the costsassociated with maintaining the status quo.

DiscussionandConclusionFollowing the speakers, time was given todiscussions, providing an opportunity for Ms.Agnieszka Czupryniak, who is the Chair of theWorking Party on Public Health of the Council ofthe EU to outline the Polish Presidency’s work onrespiratory diseases over the previous monthwhile encouraging MEPs to continue raisingawareness. She provided encouraging news byconfirming the recommendations of the EFA Callof Action had been addressed in the Presidencydraft Conclusions on chronic respiratoryconditions to be adopted at the EPSCO Council on2 December. As an additional insight, OlliSeppänen of the Federation of European Heating,Ventilation and Air Conditioning called forattention upon the need to promote a balancedapproach on energy efficiency which also includesspace for a debate on the importance ofpreserving personal health and indoor air quality.

The EFA Respiratory Allergies book launch eventbrought together a diverse group of stakeholders,sharing different experiences and expertise. Aconsensus was tangible among event speakersthat the recognition of respiratory allergies ispresently insufficient. The Call to Action and datafrom the book were well received and althoughthe alarming rise in respiratory allergies presents amajor health challenge for societies acrossEurope, the recommendations of experts andencouragement from policymakers can contributetowards enhancing progress and reducing theburden of these diseases

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Policyrecommendations Actively promotes the six recommendations of the EFA Call to Action, which are in line with the

draft Presidency Conclusions as an opportunity to encourage Member States to adopt nationalplans on rare diseases and therefore reduce costs to society and increase quality of life amongpatients. EFA recommendations are:

o Respiratory allergies must be taken seriously as a public health problem;

o National health programs for respiratory diseases must be adopted;

o Respiratory disease management and control must be prioritized;

o Healthcare professionals must receive adequate training for proper diagnosis andtreatments to benefit patients;

o Healthcare and reimbursement policies must be aligned to support appropriate diseasemanagement;

o Indoor air quality must be improved

Acknowledging Trends: Throughout the EU, the rising prevalence of respiratory allergies,especially amongst children, will be directly linked to the unhealthy ageing of Europeanpopulations;

AcknowledgementThe event was endorsed by Allergic Rhinitis and its Impact on Asthma (ARIA), the European Academy ofAllergy and Clinical Immunology (EAACI), European Respiratory Society (ERS), the Global Allergy andAsthma European Network (GA²LEN), the International Primary Care Respiratory Group (IPCRG), and theWorld Health Organization’s Global Alliance for Respiratory Diseases (WHO GARD) and supported byunrestricted educational grants from EFA sustainable funding partners ALK Abelló and Stallergenes.