Report on the EFA Respiratory Allergy Book Launch Event

Transcription

1 Reprt n the EFA Respiratry Allergy Bk Launch Event The Eurpean Federatin f Allergy and Airways Diseases Patients Assciatins (EFA) successfully held its launch event n Nvember 22, 2011 at the Eurpean Parliament in Brussels, BE fr the release f its new Respiratry Allergy Bk. The publicatin prvides new data n respiratry allergies, which are currently Eurpe s mst cmmn and underestimated chrnic disease. Data was cllected frm acrss Eurpe, thrugh the cperatin and participatin f 18 EFA member rganizatins, which presented lphles and challenges in the diagnsis and management f respiratry allergies, cnfirming the wrrying estimatin that 1 in 2 Eurpeans may suffer frm an allergy by The event was c-hsted by Members f Eurpean Parliament (MEPs) Miss Elisabetta Gardini (EPP, Italy) and Miss Nessa Childers (S&D, Ireland). Mr. Michael Hübel frm the Eurpean Cmmissin as well as the representatives frm the Plish Presidency participated alng with patients and ther relevant representatives f NGOs and the medical cmmunity. EFA Eurpean Federatin f Allergy and Airways Diseases Patients' Assciatins 35 Rue du Cngrès, 1000 Brussels, Belgium - Tel. +32 (0) Fax. +32 (0) inf@efanet.rg

2 A Breath f Fresh Air Call t Actin: Raise Awareness, Relieve the Burden The event began with an intrductin f EFA President Breda Fld, wh verviewed EFA initiatives fr addressing respiratry allergies in Eurpe. The publicatin f the new bk represents a milestne which marks the cmmencement f a fur year allergy awareness prject. The launch event fr the bk at hand, represented a vital pprtunity fr bringing tgether plicymakers, patients, medical experts and ther stakehlders t address their cncerns fr respiratry allergies. The bk itself seeks t bring better awareness n the burden f respiratry allergies and t grant greater access t quality care and preventin fr patients. Mrs. Fld underscred the imprtance f the Call t Actin cntained in the bk, which utlines six clear bjectives fr relieving the burden f respiratry allergies n scieties. The speakers thrughut the event added value t the Call t Actin by ffering recmmendatins n ne r mre f the fllwing bjectives: 1) Increase the plitical recgnitin f respiratry allergies as a real and serius disease; 2) Prmte natinal prgrammes n respiratry allergies; 3) Priritize the management and cntrl f respiratry allergies; 4) Prmte training in allergy fr healthcare prfessinals t imprve accurate and early diagnsis; 5) Align healthcare and reimbursement plicies t supprt apprpriate disease management; 6) Imprve indr air quality -2-

3 MEP Elisabetta Gardini expressed cncern ver hw respiratry allergies remain a neglected disease. She explicitly endrsed EFA s campaign fr awareness-raising with the supprt f the Eurpean Parliament while encuraging thers present t ensure allergies have a place in the Health prgramme. Tgether such measures culd prvide a means fr cuntering the mst recent trend and permit the treatment f respiratry allergies as a legitimate public health cncern acrss EU member states. An Unsettling Trend: the Increasing Prevalence f Respiratry Allergies acrss Eurpean Cuntries The editr and frmer EFA President Dr. Erkka Valvirta presented the key findings cntained within EFA s bk n respiratry allergies. The ratinale behind the EFA Allergy Awareness Prject is t address the grwing likelihd that ver half f Eurpean citizens culd have chrnic allergic symptms by Dr. Valvirta reaffirmed bk findings that there is lw awareness at all levels, including amng the patients themselves, and a general deficiency fr understanding bth allergies and asthma as serius public health prblems. Infrmatin in the bk was cllected frm EFA members (i.e. patients assciatins) representing 18 Eurpean cuntries and 414 millin peple in Eurpe. Dr. Valvirta emphasized the One Airway-One Disease premise, which acknwledges rhinitis t precede the subsequent develpment f asthma in a patient. As a result, there are high csts t the prevalence f respiratry allergies thrughut Eurpe, as every furth wrking patient tk time ff due t allergic rhinitis and every third studying patient tk time ff schl as the result f the same chrnic cnditin. Dr. Valvirta emphasized inflammatin as the key mechanism behind symptms fr chrnic respiratry allergies. He nted that while there is n primary means fr the preventin f respiratry allergies, plenty f steps can be taken t successfully reduce the number and frequency f severe exacerbatins amng patients. -3- In addressing the pririty n respiratry allergies n behalf f the Plish Presidency, Prfessr Blesław Samliński presented the Plish Presidency priritizatin n chrnic respiratry diseases, which will lead t the adptin f Cuncil Cnclusins n 2 December. He expressed cncern fr increases in the frequency f allergy prevalence acrss Pland and ther neighbring cuntries f Central Eurpe. Additinally, he shared alarming statistics cnfirming a 14% increase in the number f children (6-7 years ld) with asthma in Pland, the highest increase in Eurpe. The Plish Presidency s presentatin specifically described the necessity t fcus upn the preventin and management f allergies and asthma amng children because their health is ne f the risk factrs in the unhealthy ageing acrss scieties.

4 During the event, the representatives frm the Cmmissin and Plish Presidency bth highlighted the imprtance f the adptin f the Presidency Cnclusins n 2 December, which will bring a plitical recgnitin n the burden f chrnic respiratry diseases. By addressing the rising trend f chrnic respiratry diseases, and respiratry allergies in particular, the much anticipated Presidency Cnclusins will prvide a crucial step twards prmting awareness in the bth EU institutins and amng Eurpean cuntries. In this way, plitical supprt can be generated t cincide with nging effrts at the natinal and lcal levels by gvernments, patient assciatins and ther actrs. Addressing the Challenges f Respiratry Allergies at the Eurpean Unin The EU plicymakers at the event cllectively prvided fr a strng presence, representing the Eurpean Parliament, Eurpean Cmmissin and Plish Presidency. Mr. Michael Hübel, Head f Unit SANCO (C4), articulated that a challenge fr the effective raising f awareness thrughut Eurpe will be the ability f varius respndents t cntribute twards frming a chesive respnse. In this way, the campaign t prmte chrnic respiratry diseases, including respiratry allergies, can be far mre effective acrss all levels. Hwever, such a prcess culd begin thrugh sharing cnsistent infrmatin acrss cuntries. The imprtance f strengthening bth Eurpean and natinal awareness prmtin fr imprving indr air quality was addressed specifically by MEP Nessa Childers. She attributes the decisin f Ireland t be the first natin in Eurpe t ban tbacc smking indrs as being an abslute liberatin t her persnal life. She cnfessed it wuld have nt been pssible fr me t becme a plitician withut this ban. A smke free envirnment is a huge issue every cuntry shuld be dealing with. Accrding t Ms. Childers, even within the Eurpean Parliament, MEPs ften struggle with a lack f awareness f rhinitis, as they ften verlk their cnditins, which tend t wrsen with air travel. T her surprise, indr air quality in the Parliament buildings in Brussels and Strasburg remains inadequately pr. Mr. Hübel acknwledged the significance f the data cllected by EFA in 18 Member States and the Call t Actin pints as they are particularly relevant in addressing sci-ecnmic inequalities in healthcare. Hwever, he als nted that the Call t Actin pints fr respiratry allergies are Member States respnsibility, but the Cmmissin has a rle t play in addressing the risk factrs, such as tbacc cntrl and indr/utdr air quality. Of particular relevance is the wrk perfrmed between different Cmmissin sectrs and the Wrld Health Organizatin (WHO) t mitigate tbacc smke and supprt living healthy lifestyles. -4-

5 Life with Respiratry Allergies: the Patient s Perspective In additin t remarks frm MEP Childers f her wn persnal experience with pr indr air quality and its effects upn respiratry allergies, tw additinal patient testimnies prvided significant insight int life cping with respiratry allergies fr all attendees. Janna Bttema agreed t travel frm the Netherlands t participate in the event and share lessns learned frm her persnal experiences. As an active member f her lcal cmmunity, she expressed cncerns with the deteriratin f indr air quality. The cmbined frces f inadequate climate cntrl and increasing levels f fragrance use generate indr envirnments f lw cmpatibility with patients wh have respiratry allergies. The ther way is t imprve healthcare fr airways diseases, assuring early diagnsis and unified treatment prcesses, which are currently fragmented. The secnd patient testimny came frm Sanna Kukka n the behalf f her sn Alex. Her experience in seeking the right diagnsis and treatment fr her yung sn within the Belgian healthcare system clearly demnstrates a greater necessity fr respiratry allergy awareness even amng primary care physicians. When Alex first began t experience severe allergic symptms, Mrs. Kukka was tld Alex was allergic t milk and shuld avid it at all csts. Hwever, his symptms never disappeared r shwed any signs f imprvement fllwing treatments. Althugh the ban f smking indrs in sme Eurpean cuntries shws a psitive trend, the patients still are at a disadvantage as they must be very attentive twards ingredients f almst all purchases n a daily basis. Accrding t Mrs. Bttema, there are tw ways t address allergies and asthma in public places. First, it is t imprve indr air quality thrugh Eurpean level regulatins n retail items, such as husehld prducts, with a greater ptential t cause allergic exacerbatins. After being re-evaluated t pssess a respiratry allergy and the prescriptin f apprpriate medicatins, Mrs. Kukka has witnessed a huge change with Alex s life. Thanks t crrect medicatins and an accurate diagnsis, Alex is able t live a much mre nrmal life as a small child. The stry f Alex prvides an inspiratinal message, which apprpriately highlights the imprtance and relevance f the numerus recmmendatins the panel f respiratry allergy experts presented at the event. -5-

6 Dr. Jean Busquet, representing ARIA, described the Call t Actin as cmpletely in line with the Wrld Health Organizatin bjectives established fr 2011, the Year f Respiratry and Allergy Diseases. With ver 1 billin patients glbally, the audience was reminded that task f raising awareness f these underdiagnsed and undertreated chrnic diseases and cnditins are nt cnfined t cntinental Eurpe. Sharing Expertise Partners f the Respiratry Allergies Prject Fr the benefit f patients, Dr. Busquet argued, an apprpriate diagnsis is the first step t cntrl and effective management afterwards allws patients t keep cntrl. Dr. Dermt Ryan, frm IPCRG, reiterated the necessity f ensuring treatment des nt harm patients and stressed they must receive prper instructins fr effective treatments. Persnalized actin plans were als highly recmmended t allw patients t reduce medicatin intake when necessary and keep cntrl f the disease. Cllective agreement amng the experts present indicated all dctrs and patients must increase chesive awareness. In rder t cntribute additinal expertise t the event, the EFA partners f the respiratry allergies prject were invited t make presentatins t shw slidarity n the subject. Participating rganizatins included representatives frm ARIA, ERS, EAACI, GAL²EN and IPCRG.1 Prfessr Trsten Zuberbier, the Secretary General f GAL²EN, presented its prject f a pan-eurpean surveillance system f allergy and asthma, which can track increasing intensities f allergy triggers, such as Ambrsia pllen, acrss Eurpe. Such a system is vital t identify trends and addressing their ptential impact upn public health befre they becme serius prblems. GAL²EN calculated the estimated csts f untreated patients amunted t a reductin in perfrmance at wrk by 10-30%, which is a mnetary lss f per day. This is quite a cntrast cmpared t the cst f treatment, which amunts t 1 per day. This evidence highlights the high burden f allergies n ecnmies. 1 See Acknwledgements n Page 8 fr clarificatins f acrnyms -6-

7 The trend f increasing prevalence fr respiratry allergies and chrnic diseases was a universal cause fr cncern amng the experts as well. Prfessr Francesc Blasi, the President elect f ERS, utlined the ptential factrs driving this trend. The list was extensive, ranging frm geneenvirnment interactins t secnd hand smke and ccupatinal expsure fr adults. An increase in allergic rhinitis f greater than 5% has been bserved in the last 5 years and such a trend cntinuing is particularly cncerning as can result in 50% f children having the cnditin by Additinally, the influx f migrants frm afar in many Eurpean cuntries can cntinue t increase the ppulatin f patients sensitive t respiratry allergies. Their new hmes, neighbrhds and wrkplaces can trigger respiratry allergies as their bdies are expsed t a new envirnment. Discussin and Cnclusin Fllwing the speakers, time was given t discussins, prviding an pprtunity fr Ms. Agnieszka Czupryniak, wh is the Chair f the Wrking Party n Public Health f the Cuncil f the EU t utline the Plish Presidency s wrk n respiratry diseases ver the previus mnth while encuraging MEPs t cntinue raising awareness. She prvided encuraging news by cnfirming the recmmendatins f the EFA Call f Actin had been addressed in the Presidency draft Cnclusins n chrnic respiratry cnditins t be adpted at the EPSCO Cuncil n 2 December. As an additinal insight, Olli Seppänen f the Federatin f Eurpean Heating, Ventilatin and Air Cnditining called fr attentin upn the need t prmte a balanced apprach n energy efficiency which als includes space fr a debate n the imprtance f preserving persnal health and indr air quality. Pascal Demly and Mises Caldern frm the EAACI cntributed t the panel discussin by reemphasizing the direct impacts upn quality f life assciated with allergic diseases amng Eurpean patients. These included decreasing efficiency at wrk fr adults, decreasing perfrmance, and increasing absenteeism at schl fr children. The failure t address allergic diseases clearly pints t bth a rise in healthcare csts while patients cntinue t experience mre health-related impairments. The EAACI representatives pinted twards varying reimbursement plicies acrss Eurpe as a wrrisme representatin f the csts assciated with maintaining the status qu. The EFA Respiratry Allergies bk launch event brught tgether a diverse grup f stakehlders, sharing different experiences and expertise. A cnsensus was tangible amng event speakers that the recgnitin f respiratry allergies is presently insufficient. The Call t Actin and data frm the bk were well received and althugh the alarming rise in respiratry allergies presents a majr health challenge fr scieties acrss Eurpe, the recmmendatins f experts and encuragement frm plicymakers can cntribute twards enhancing prgress and reducing the burden f these diseases -7-

8 Plicy recmmendatins Actively prmtes the six recmmendatins f the EFA Call t Actin, which are in line with the draft Presidency Cnclusins as an pprtunity t encurage Member States t adpt natinal plans n rare diseases and therefre reduce csts t sciety and increase quality f life amng patients. EFA recmmendatins are: Respiratry allergies must be taken seriusly as a public health prblem; Natinal health prgrams fr respiratry diseases must be adpted; Respiratry disease management and cntrl must be priritized; Healthcare prfessinals must receive adequate training fr prper diagnsis and treatments t benefit patients; Healthcare and reimbursement plicies must be aligned t supprt apprpriate disease management; Indr air quality must be imprved Acknwledging Trends: Thrughut the EU, the rising prevalence f respiratry allergies, especially amngst children, will be directly linked t the unhealthy ageing f Eurpean ppulatins; Acknwledgement The event was endrsed by Allergic Rhinitis and its Impact n Asthma (ARIA), the Eurpean Academy f Allergy and Clinical Immunlgy (EAACI), Eurpean Respiratry Sciety (ERS), the Glbal Allergy and Asthma Eurpean Netwrk (GA²LEN), the Internatinal Primary Care Respiratry Grup (IPCRG), and the Wrld Health Organizatin s Glbal Alliance fr Respiratry Diseases (WHO GARD) and supprted by unrestricted educatinal grants frm EFA sustainable funding partners ALK Abelló and Stallergenes. -8-