Summit Conference Hepatitis B and Hepatitis C. Brussels, October, 2010

Transcription

1 Summit Coferece Hepatitis B ad Hepatitis C Brussels, October, 2010

2 Sposorig Parters For questios with regard to the Coferece or its ogoig programme please cotact: Prof. Agelos Hatzakis Co-Chair of the Steerig Group copied to: Marily Clark Secretary to the Steerig Group Mobile Telephoe: (+352)

3 Table of cotets Itroductio 5 Steerig Group ad Advisory Group 6 Executive Summary - Patiet Self-Help i Europe 8 Executive Summary - Migratio, Hepatitis B ad Hepatitis C 12 Patiet Self-Help i Europe 17 Migratio ad Hepatitis B ad Hepatitis C 61 3

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5 Itroductio Dear Frieds, It is with great pleasure that we provide you with this report from the Hepatitis B ad C Summit Coferece held i Brussels o October 14-15, The Hepatitis B ad Hepatitis C Coferece brigs together a wide rage of stakeholders who are uited i their goal to ecourage Europea ad atioal stakeholders to devise effective policies ad implemet targeted actios to curtail the risig epidemic of hepatitis B ad C i Europe. This brief report cotais the Call to Actio from the Steerig Committee of the Hepatitis B ad C Summit ad its parter orgaisatios as well as the Executive Summaries of two reports preseted at the Summit: oe o the role of patiet-self help orgaizatios, authored by the Europea Liver Patiets Associatio (ELPA) ad the other o the topic of migratio ad health, prepared by researchers from the Iteratioal Cetre for Migratio, Health ad Developmet. This is ot the first iitiative aimed at tacklig viral hepatitis i Europe. However, the eed to develop effective policies ad actios targetig viral hepatitis remais as urget as ever. Fourtee millio people are ifected with chroic viral hepatitis B i Europe ad 9 millio people with viral hepatitis C people die each year due to HBV-related causes, while people succumb to HBC-related diseases. These figures are staggerig, ad yet geeral awareess of the health risks associated with viral hepatitis is very low. Despite the cotiued efforts of patiet groups, we still eed a uified comprehesive political strategy for tacklig viral hepatitis i Europe. Moreover, policy efforts are hampered by isufficiet data ad a fractured ad poorly coordiated stakeholder base. Hepatitis B ad C kow o borders, so that efforts to cotai viral hepatitis i oe coutry will have a impact o the epidemiology of the disease i other EU member states. A comprehesive Europea strategy supported by effective atioal plas is thus essetial if we are to reduce the burde posed by viral hepatitis i Europe. The mai areas that require focus are: Ehaced surveillace Broader ad more effective prevetio Early Diagosis ad Better Access to Care. Fially, policies will oly be effective if they ivolve all relevat stakeholders, have true Europea leadership ad work with public health etworks ad patiet groups. Hepatitis B ad C must also become priorities for research if we are to fill the log-existig gaps i our kowledge ad uderstadig of viral hepatitis i Europe. Thak you for joiig us i our effort to combat viral hepatitis i Europe. Sicerely, Agelos Hatzakis Nadie Piorkowsky Massimo Colombo (Co-Chair) (Co-Chair) (Co-Chair) Professor of Epidemiology Presidet, Europea Fodazioe IRCCS ad Prevetive Medicie Liver Patiets Associatio Maggiore Hospital Director, Departmet of Hygiee (ELPA) Uiversity of Mila Epidemiology & Medical Statistics Athes Uiversity Medical School 5

6 Steerig Group ad Advisory Group Advisory Group Marita va de Laar Programme Coordiator, STI icludig HIV/AIDS ad bloodbore viruses Europea Cetre for Disease Prevetio ad Cotrol Stockholm Pierre va Damme Director, Viral Hepatitis Prevetio Board Atwerp Steerig Group CO-CHAIRS Agelos Hatzakis Director, Departmet of Hygiee, Epidemiology & Medical Statistics Athes Uiversity Medical School Nadie Piorkowsky Presidet, Europea Liver Patiets Associatio. Massimo Colombo Chairma, 1st Divisio of Gastroeterology Fodazioe IRCCS Maggiore Hospital Policliico, Magiagalli e Regia Elea Uiversity of Mila TREASURER Rafael Esteba Liver Uit, Departmet of Iteral Medicie, Vall d'hebro Uiversity Hospital, Barceloa 6

7 MEMBERS Mauel Carballo Executive Director, Iteratioal Cetre for Migratio, Health ad Developmet (ICMHD) Geeva Charles Gore Presidet, World Hepatitis Alliace, Geeva Chief Executive, The Hepatitis C Trust, Lodo Harry Jasse Chairma, Dutch Associatio of Hepatology Head, Liver Uit, Rotterdam Erasmus Uiversity Medical Ceter Michael Mas Director, Departmet of Gastroeterology, Hepatology ad Edocriology, Haover Medical School Patrick Marcelli Service d'hépatologie, Hôpital Beaujo, APHP Uiversity of Paris George Papatheodoridis Athes Uiversity Medical School Hippokratio Geeral Hospital, Athes Prof. Howard Thomas Head of Departmet of Hepatology ad Gastroeterology Imperial College, Lodo Domiique Valla EU Policy Cousellor, Europea Associatio for the Study of the Liver Heier Wedemeyer Secretary Geeral, Europea Associatio for the Study of the Liver SECRETARY TO THE STEERING GROUP Marily Clark Corporate Secretary, Hepatitis B ad C Summit Cofereces Associatio asbl Luxembourg. 7

8 Executive Summary: Hepatitis Patiet Self-Help i Europe The Europea Liver Patiets Associatio (ELPA) Purpose This report presets the results of a survey of 20 Europea liver patiet groups cocerig the threat of viral hepatitis i their respective coutries. The report seeks to illustrate the importat cotributio patiet self-help ca make to a coutry s public health system, by supportig patiets ad their families, educatig healthcare professioals ad raisig public awareess. Furthermore, the report aims to idetify good practice from differet Member States i viral hepatitis-related public health projects ad to outlie the challeges that remai. Viral Hepatitis Viral hepatitis B ad C are some of the most dagerous ifectious diseases i terms of mortality, trasmissio ad disease burde. I Europe, 14 millio people are ifected with chroic viral hepatitis B (HBV) ad 9 millio people with viral hepatitis C people i Europe die each year due to HBV-related causes, while people succumb to HBC-related diseases. Geeral awareess of the health risks associated with viral hepatitis is very low. Surveys suggest that oly 21.5% of Europea hepatitis patiets kew of viral hepatitis at the time of their ifectio (23% for viral hepatitis B ad 20% for viral hepatitis C) ad oly 27% kew that they were at risk of becomig ifected (both for viral hepatitis B ad C). Low awareess is dagerous, as the log-term cosequeces of late diagosis liver cirrhosis ad liver cacer ca be severe ad potetially fatal. 75% to 85% of cases of primary liver cacer are attributable to chroic ifectios with viral hepatitis B or viral hepatitis C. Liver cacer is the third highest cause of cacer deaths worldwide, ad i Europe, liver cacer-related deaths have icreased sigificatly over the past two decades. Lack of awareess also exteds to policy-makers: viral hepatitis is simply ot o the radar scree of decisio makers. Europea policies thus far have focused almost exclusively o primary prevetio through vacciatio ad there is a urget eed to itroduce strog measures to prevet the spread of viral hepatitis ad further the idetificatio of viral hepatitis patiets. Survey Fidigs The patiet associatios iterviewed vary cosiderably i set-up, size ad staff, with voluteers makig up 72% of huma resources. Lack of fudig is a costat challege, ad the pharmaceutical idustry is the major source of fiacig, ofte complemeted by public sector/govermet fudig ad doatios from the geeral public. All patiet associatios have diversified their fudig sources ad are therefore ot domiated by oe sigle pharmaceutical compay. Patiet groups across Europe are active i a variety of ways. Most of their activities focus o couselig ad awareess-raisig. Couselig is fudametal to the objectives ad missios of each patiet group ad patiet groups. Couselig ivolves direct iteractio with patiets to support them ad their families through iformatio o the disease, treatmet optios ad cetres of care. The psychological support provided by patiet groups is critical as this aspect of the disease is largely eglected by medical cetres ad hospitals. 8

9 Awareess-raisig aims to icrease the kowledge of liver diseases amogst various target groups. Existig disease awareess campaigs target both the geeral public as well as specific risk groups, such as itraveous drug users, prisoers or tattoo artists. World Hepatitis Day (May 19th) costitutes a importat milestoe for patiet group activities, which may iclude free testig iitiatives, distributio of iformatioal flyers or brochures ad lauchig advertorials i the media. Patiet groups also egage extesively with other stakeholders. I particular, the support received from specialists is already well established. Celebrities have bee willig to some extet to cooperate. Buildig relatioships with policy makers is ot always easy, however sigificat progress has bee made i may coutries. The most problematic iteractio is with geeral practitioers, who very ofte are ot sufficietly traied to recogise the symptoms of liver disease ad are ofte reluctat to participate i traiig programmes or to led support to awareess raisig campaigs. Access to treatmet is ot a sigificat issue i most Member States. I particular, Easter Europea coutries, such as Bulgaria or Croatia have recetly made tremedous progress ad provided special fuds for viral hepatitis treatmet, owig largely to the efforts of the patiet groups i questio. Waitig times for treatmet have also bee greatly reduced i these coutries. O the other had, waitig times i Polad, ca still amout to 3-5 years. I terms of prevetio, may coutries have adopted vacciatio programmes for childre but practices remai ueve across Europe. For example, Bulgaria was oe of the first coutries i Europe to itroduce childhood vacciatio i Yet there are still gaps amog vulerable groups, e.g. the Siti ad Roma. Cosiderable efforts also eed to be made to capture age groups bor before The greatest challege remais i the area of secodary prevetio, i.e. screeig. Targeted screeig campaigs have bee very successful i some coutries such as the Silesia regio i Polad ad i Blackpool i Eglad, where mortality rates from chroic liver disease are very high. But to date, oly Frace ad Scotlad have istituted a govermet-led programme to improve screeig i a sustaiable ad comprehesive maer. Coclusios ad Recommedatios This survey shows that patiet groups are doig a fatastic job, cosiderig the small scale of their operatios ad the challeges they face. They have maaged to achieve sigificat results i a umber of areas over recet years, gradually icreasig their competeces ad output. If it were ot for the cosistet efforts of patiet groups, i the majority of coutries ivestigated there would ot be ay viral hepatitis awareess-raisig campaigs. Patiet groups fill the gap, frequetly with official support ad approval, tryig to tackle the challege of cosistetly low public awareess. The three mai challeges that cotiue to face patiet groups are: lack of good quality data o both the scietific ad ecoomic aspects of viral hepatitis; the high level of stigma surroudig viral hepatitis, ad the geeral lack of iterest or icetive o the part of health professioals ad i particular, geeral practitioers, to become better iformed about the coditio. I coclusio, proper atioal strategies are clearly eeded to make a differece ad reduce the burde of the disease by idetifyig ad treatig a greater umber of viral hepatitis carriers. At the Europea level, a Coucil Recommedatio o viral hepatitis B ad C screeig of risk groups would be a powerful tool i this cotext. Also, if Europe is serious about tacklig its viral hepatitis challege, Member States, guided by the EU, eed to work i a cocerted maer. Viral hepatitis kows o borders ad efforts i oe Europea coutry ca be udermied by less cosistet efforts i a eighbourig state. There is therefore a clear eed for greater crossborder coordiatio ad a EU-wide approach to implemet screeig strategies, target risk groups across Europe ad make tacklig viral hepatitis a public health priority. 9

10 Patiet group achievemets ad cotributios: The report provides a comprehesive descriptio of the achievemets ad cotributios of differet patiet groups across Europe. Some of the most otable examples are preseted below: AWARENESS RAISING: Austria: I cooperatio with regioal sick fuds, so-called ifo-poits for a healthy liver have bee created, where patiets ad their carers ca obtai free ad aoymous support from teams icludig hepatologists/gastroeterologists ad psychologists. Belgium: The patiet orgaisatio recetly published a book with medical advice ad testimoials from patiets. It has also set out letters ad materials to all muicipalities to support awareess-raisig o viral hepatitis, which has already received some positive feedback. Portugal: The patiet associatio has a cosiderable umber of celebrity public supporters ragig from footballers to rock musicias ad Members of the Europea Parliamet. Romaia: A recet campaig targeted school childre ad teeagers from 9 pilot couties. The objective was to provide them with iformatio o viral hepatitis A, B ad C. Childre were ivited to iformal debates coducted by voluteers. Spai: The patiet associatio has partered with the Miistry for Health to orgaise work tables to address the topic of viral hepatitis ad to preset cocrete cases. Bulgaria: The patiet orgaisatio succeeded i makig viral hepatitis a topic i the Bulgaria versio of the popular TV show, Big Brother o the occasio of the World Hepatitis Day 2009, raisig awareess of the diseases, its risk groups ad the eed to get tested. HEALTH PRACTITIONER EDUCATION: UK: Oe promiet patiet group is developig a olie learig tool o viral hepatitis C for geeral practitioers i collaboratio with the Royal College of Geeral Practitioers. RESEARCH: Italy: The Miistry of Health has agreed to carry out a prevetio study, results of which will be released i SCREENING: Polad: A screeig campaig i the Silesia regio got 5000 people to be tested for viral hepatitis C ad revealed a idetificatio level of 1.5%. The campaig was widely picked up by media. Belgium: Viral hepatitis tests are ot icluded i geeral check-ups. 10

11 ACCESS TO TREATMENT: Croatia: The waitig time for treatmet for viral hepatitis C has bee reduced from 2 to 3 years i 2006 to a average of oly 2 moths to date. POLICYMAKER OUTREACH: Germay: The patiet group has established log-term relatioships with leadig hepatologists but also with oe of the former health miisters (who is their patroess) ad various members of the Germa govermet icludig the Health Miistry. NATIONAL POLICY ON LIVER DISEASE: Frace: There is a atioal pla for the fight agaist viral hepatitis B ad C, ad the Vice-Presidet of SOS Hépatites, a large patiet group, is also the Vice-Presidet of the atioal committee givig follow-up to the atioal pla. UK: The Govermet has committed to a Natioal Liver Strategy ad it has appoited a Liver Tsar to formulate it. Evidece that liver is the oly disease amog the big killers that is o the rise have prove key to achievig these goals. 11

12 Executive Summary: Migratio, Hepatitis B ad Hepatitis C Mauel Carballo, Rowa Cody, Edward O Reilly, Aa Paola de Felici Iteratioal Cetre for Migratio, Health ad Developmet Itroductio While fears surroudig the liks betwee huma mobility ad the spread of diseases such as TB have log bee aroud, cocer has oly ow begu to be focused o viral hepatitis ad its potetial mobility. Yet give that almost 50% of the world s populatio lives i areas of high chroic HBV prevalece ad that global migratio icreasigly ivolves people from these areas, this focus is log overdue. WHO estimates that about 2 billio people are livig with viral hepatitis, ad that aroud 350 millio have a chroic form of the disease. Migratio i Europe I Europe, the movemet of people is growig i size ad scope. For the first time i history, the regio has become more of a receiver tha a exporter of people. Yet the topic of migratio ad migrats remais cotroversial. There is a tedecy for the i-migratio of people from outside the EU regio to be questioed ad at times rejected. As a result, Europea coutries have o the whole bee caught uprepared to respod to the public health challeges that are ievitably associated with the arrival of large umbers of people from disparate coutries ad with differet health experieces. Defiig migratio Precise estimates of the umber of migrats globally or withi Europe are difficult to obtai. Official UN figures suggest that upwards of 200 millio people ca be defied as livig outside their place of birth, but this does ot take ito accout the massive umber of people movig from rural to urba areas, refugees ad the growig umber of IDPs, the people movig irregularly across borders, the growth of regular ecoomically-motivated migrats movig for log periods of time betwee coutries, the people beig trafficked ad the circular migrats people movig to ad from coutries for shorter periods of time. Moreover, ot all migrats come from the same type of backgroud, or do all migrats move for the same reasos ad uder the same circumstaces. The vulerability of migrats from differet backgrouds to commuicable ad o-commuicable diseases is likely to be differet ad so is their capacity to respod to their health eeds ad participate i atioal public health programmes. Viral hepatitis i Europea migrat populatios Much of migratio ito EU coutries ivolves the movemet of people from parts of the world that have high or itermediate levels of HBV ad HCV. High HBV prevalece areas iclude much of Southeast Asia ad the Pacific Basi (excludig Japa, Australia, ad New Zealad), Sub-Sahara Africa, the Amazo Basi, parts of the Middle East, the Cetral Asia Republics, ad a umber of coutries i Easter Europe. I these areas, up to 90% of the populatio is estimated to be exposed to HBV before the age of 40, ad 8-20% of these people become HBV carriers. I additio to the risks bore from their coutries of origi, migrats ad their offsprig also ted to be more vulerable to exposure to drugs (icludig alcohol ad tobacco) tha other people of similar socio-ecoomic backgroud. Drug dealers ofte target youg migrats ad childre of migrats lookig for a way out of difficult socio-ecoomic circumstaces or watig to make a statemet of rejectio of both their parets ad the host society. Migrat sex workers also costitute a particular risk group. A recet report idicates that as may as 47% of all female sex workers i Europe are migrats, 47% of all trasgeder sex workers are migrats, ad 32% of all male sex workers are also migrats. 12

13 Barriers to care Admiistrative rules ad procedures ca be importat barriers to access ad use of health care services for migrat commuities. Complex, time-cosumig processes that also call for work ad residece permits, health isurace papers ad permaet addresses which irregular migrats ca rarely provide are all reasos for ot cotiuig with health care seekig. Idividuals willigess to egage i health promotio ad protectio also depeds o how they perceive health ad disease ad what they believe ca be doe at a idividual ad health system level to help them. This perceptio will i tur be mitigated by age, geder, ethicity, occupatio ad liguistic ability. Policies targetig viral hepatitis Although viral hepatitis has come to costitute a major threat to health i the EU, the regio is still characterized by a lack of stadardized policies ad practices, especially with respect to migrats. Most policies focus o primary prevetio. Vacciatio Globally, 168 coutries provide uiversal vacciatio (ifats ad/or adolescets) but oly 131 out of the 168 have achieved more tha 80% coverage with three doses. Withi Europe, ot all coutries approach HBV immuizatio i the same way. The UK, Irelad, the Netherlads, Demark, Filad, Icelad, Norway, ad Swede have adopted targeted vacciatio strategies i which oly those who are cosidered to be at high risk (such as healthcare workers, ijectig drug users, those livig with family members with HBV, me who have sex with me, sex workers, ad people regularly receivig blood ad blood products are routiely vacciated. However, as more tha 30% of those livig with acute HBV ifectio have o idetifiable risk factors, targeted populatio approaches are likely to miss a sizeable proportio of those for whom vacciatio would be justified. Of ote, migrats from high or itermediate HBV prevalece coutries have ot bee idetified withi this approach. Screeig Screeig of migrats is to be cosidered if policies are to reduce the burde posed by viral hepatitis o migrat commuities. Screeig must be doe i a evidece-based way that defies whe ad how ofte screeig should be offered ad respects the huma rights of those screeed. Particular attetio is eeded to esure that idividuals are ot stigmatised because of their atioal origi or their viral hepatitis status. Screeig must also be accompaied by culturally-sesitive iformatio ad cousellig if HBV ad HCV awareess is to be improved i migrat groups ad stigma associated with viral hepatitis is to be reduced. Access to care Access to all aspects of care remais a sigificat barrier for migrats. Poverty, distace ad poor trasport, low levels of paretal educatio i the case of childre, ad cultural, liguistic ad religious differeces are all importat factors i determiig the extet to which migrats ca ad do access proper care. Coclusios The field of migratio ad viral hepatitis is still at its ifacy. Studies use differet defiitios ad cocepts of the dyamic exus of migratio ad health. The problem of uofficial ad urecorded migratio also poses a major obstacle to uderstadig how the process of populatio movemet is affectig health i Europe. The evidece thus far calls for more ad better tailorig of out-reach programmes that address the psychosocial, cultural, legal ad ecoomic factors that affect the capacity of migrats to participate i ad beefit from public health iitiatives targetig viral hepatitis. Far more attetio eeds to be give to providig migrats with iformatio ad educatio o viral hepatitis i laguages ad i ways that are attractive ad uderstadable. The diversity of the migrat populatio must be take ito accout i the developmet of all policies ad programmes. Ad fially, it must be recogised that ofte the problem is ot simply oe of migrat cultures but rather oe of a broader deial of viral hepatitis i the geeral public. This must be overcome before aythig else if atioal strategies o migrats are to be developed. 13

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15 FULL REPORTS 15

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17 Report o Hepatitis Patiet Self-Help i Europe by the Europea Liver Patiets Associatio (ELPA) 17

18 Report o Hepatitis Patiet Self-Help i Europe Foreword The followig report showcases the work of liver patiet groups i Europe, ad ivestigates what impact, if ay, they have o a coutry s attitude towards liver disease. Before doig so, it is first importat to reflect o a couple of questios related to the legitimizatio ad limitatios of patiet groups i geeral, as well as the particularities of liver patiet groups, more specifically. Like other orgaisatios i the self-help domai, patiet groups are set up by people who share a commo cocer or problem ad would like to take actio. Patiet groups provide fora to share experieces, exchage iformatio ad provide those affected by the disease with moral ad practical support. This iteral-facig aspect of their work appears to be well-recogised ad appreciated by o-patiets, be they policymakers, healthcare professioals or the geeral public, who agree that patiets should be best placed to provide this kid of support to fellow patiets. More problematic o the other had seems to be the exteral-facig aspect of their work, i.e. the fact that patiet groups icreasigly campaig for what they call their rights, demadig access to early diagosis, appropriate medicatio ad geerally seekig to raise awareess of the disease: You are oly represetig a small fractio of patiets i our role, however, we eed to cosider the greater good of public health, patiet groups are ofte told by policy-makers or public health authorities. It is certaily true that huma-beigs suffer from a multitude of diseases ad coditios ad that a specific patiet group ca oly speak of the disease(s) its members are sufferig from. It is equally true that i light of limited resources, oe has to fid a fair way of allocatig the public health fudig available accordig to the best possible use amogst all these differet patiets. Clearly, this is ot a easy task. Notwithstadig the above, oe has to bear i mid that the rather abstract term public health meas othig else but the health of a atio. For a atio to be healthy all these differet diseases eed to be addressed. Out of experiece, coutries which do ot cofie themselves to spedig a lot of moey o treatmet, fare much better i this edeavour. Istead, good practice coutries are also sufficietly forward lookig ad are hece istallig measures that either completely prevet certai diseases i the future, or lighte their burde. This ca be doe by ivestig i measures which lower the risk of cotractig the disease, which promote early diagosis ad the developmet of better treatmet. Naturally, from their ow experiece, preset-day patiets are i a positio to give advice to decisio-makers at various levels ad o various issues e.g. o how a public health campaig ca be made more effective, why patiets are diagosed so late, or how adherece to treatmet ca be improved. Represetig 21 atioal patiet groups who strive to be active i both the fellow-patiet/iteral-facig ad exteral-facig field, the Europea Liver Patiets Associatio (ELPA) does advocacy work maily at EU level. Whilst usually coverig a multitude of liver diseases, the majority of our members focus o viral hepatitis B ad C. This is why ELPA, for the time beig, also cocetrates o viral hepatitis B ad C i its policy work. Outside the circles of public health specialists ad gastroeterologists, viral hepatitis B ad C are largely a ukow quatity i more tha oe respect awareess, symptoms, disease classificatio, to ame a few. A survey coducted o behalf of ELPA reveals that oly 20% of patiets had heard of the virus before their diagosis ad 27% kew of their risk. Furthermore, the disease is rightly described as a silet killer it is rather asymptomatic ad the disease ca progress for decades with the ifected perso feelig uwell, but without beig really sick. The, the carrier s coditio worses rather suddely ad is frequetly irreversible, because of the follow-o diseases which have developed uoticed. This particuar disease progressio attackig a orga of which obody quite kows what it is actually there for, might explai the rather disappoitig echo i the media: there is o poit deyig that viral hepatitis patiet groups sometimes look with jealousy at the may headlies produced by HIV/AIDS or swie flu. This is ot to say that we would advocate a retur to emiece-based policymakig. It is just that complete ad comparable data are difficult ad costly to geerate ad at the momet there seems to be a vicious circle: o data o problem, o problem o moey, o moey o data ad ultimately o improvemet of the situatio. 18

19 Despite the geeral lack of data (which is also related to the asymptomatic ature of the disease), there are examples of good, evidece-based actio to take up the fight agaist viral hepatitis. I Europe, Frace ad Scotlad are examples of such good practice. More recetly, ad outside Europe, the U.S. have commissioed ad adopted a atioal strategy o viral hepatitis ad liver cacer. The followig survey is meat to be a tribute to all those liver patiet groups i Europe which wat to make a differece to curret patiets, but also to the great umber of those who do ot yet kow of their ifectio. As such, it illustrates the patiet groups iitiatives ad activities, the successes they have, the problems they face, the hopes they etertai for the future. Fially, it ivestigates, if their work is liked to relevat policy measures. Wishig you a iterestig ad isightful read. Nadie Piorkowsky Presidet Europea Liver Patiets Associatio (ELPA) 19

20 Executive Summary The report aims to illustrate the importat cotributio patiet self-help ca make to a coutry s public health system, by supportig patiets ad their families, educatig healthcare professioals ad raisig public awareess. O the basis of iformatio received durig iterviews with 20 Europea liver patiet groups cocerig the viral hepatitis threat i their respective coutries, good practices i viral hepatitis-related public health projects i the differet Member States are aalysed while idetifyig challeges that these groups are facig. Patiet groups vary cosiderable i their set-up, size ad staff. They work extesively with voluteers ad egage mostly i couselig ad awareess raisig campaigs. Although facig budget costraits o a costat basis, patiet groups are the oly body to provide patiets with psychological support at the time of diagosis ad throughout treatmet. The awareess raisig campaigs are directed at the geeral public as well as specific risk groups. The World Hepatitis Day plays a importat milestoe for their activities icludig free testig iitiatives, distributio of iformatio i form of flyers or brochures as well as lauchig advertorials i the media. A umber of patiet groups also directly iteract with risk-groups such as drug addicts, prisoers ad tattoo studios. Patiet groups egage extesively with stakeholders: i particular, the support received from specialists is well established. I additio, a umber of celebrities have bee cooperative ad although buildig relatioships with policy makers is ot a easy task, sigificat progress has bee made. While access to treatmet is ot a issue i the majority of Member States, the greatest challege faced by patiet groups is i the area of secodary prevetio, i.e. screeig. Further challeges idetified are the availability of sufficiet scietific data o the health risk of viral hepatitis, stigmatizatio of the disease ad isufficiet cooperatio o behalf of geeral practitioers represetatives. Natioal strategies are therefore eeded to reduce the burde of the disease by idetifyig ad treatig a greater umber of viral hepatitis carriers. Furthermore, viral hepatitis does ot recogise atioal borders. There is therefore a eed for greater cross-border coordiatio ad a EU-wide approach o how to implemet screeig strategies. A Coucil Recommedatio o viral hepatitis B ad C screeig of risk groups would therefore be a powerful tool i this cotext. 20

21 Itroductio The report collates ad aalyses the iterview resposes of 20 Europea liver patiet groups cocerig the viral hepatitis threat i their respective coutries; the work they do; as well as the potetial success they have had i advocatig for sustaiable policy iitiatives which seek to address ad reduce this threat. The report seeks to illustrate the importat cotributio patiet self-help ca make to a coutry s public health system, by supportig patiets ad their families, educatig healthcare professioals ad raisig public awareess. Furthermore, the report aims to idetify good practice i viral hepatitis-related public health projects which exists i some Member States at either atioal or regioal level, ad to outlie the challeges that remai. With these fidigs, recommedatios to policymakers ad relevat stakeholders will be developed o how to further improve the situatio, ecouragig them to egage i the fight agaist viral hepatitis ad, together with patiet groups, reduce the viral hepatitisrelated burde. The report is divided i the followig sectios: Viral hepatitis Methodology Aalysis of the resposes - Size ad set-up of the patiet groups - Sources of fiacig - Mai activities - Targets of awareess campaigs - Evaluatio Coclusio & Recommedatios Summary of patiet group resposes by coutry 21

22 Report o Hepatitis Patiet Self-Help i Europe Viral Hepatitis Viral hepatitis what it is Hepatitis is the Lati word for liver iflammatio. It is characterised by the destructio of a umber of liver cells ad the presece of iflammatory cells i the liver tissue. A perso ca develop hepatitis if they cotract oe of the viruses that ca cause liver iflammatio, or as a result of exposure to substaces that ca cause hepatitis such as alcohol, fugal toxis ad certai medicies. The mai symptoms of viral hepatitis start with tiredess, geeral malaise ad slight fever. It ca exted to a icreased eed for sleep, achig muscles ad joits ad periodic light pressure or pai below the right ribs caused by a elarged liver. Jaudice is a very late symptom of chroic viral hepatitis ad is a sig that the disease has become serious. However, may patiets have o symptoms for a log time leadig to a situatio i which most ifected people are uaware of their coditio. The greatest challege for patiets is therefore the timely idetificatio of their ifectio. Viral hepatitis what is its impact I Europe, 14 millio people are ifected with chroic viral hepatitis B (HBV) ad 9 millio people with viral hepatitis C people i Europe die each year due to HBV-related causes, while people succumb to HBC-related diseases. Viral hepatitis B ad C are therefore listed amog the most dagerous ifectious diseases i terms of mortality, trasmissio ad disease burde, comparable to commuicable diseases such as iflueza, MRSA ad HIV/AIDS. The majority of viral hepatitis sufferers i Europe are uaware of their coditio. I the case of viral hepatitis C, estimates by the Eurasia Harm Reductio Network (EHRN - formerly the Cetral ad Easter Europea Harm Reductio Network - CEERHN) suggest that up to 90% of viral hepatitis C carriers do ot kow that they are ifected. 1 This is cofirmed by two surveys which ELPA has coducted amogst its members ad fellow viral hepatitis patiets. Throughout Europe, a average of oly 21.5% kew of viral hepatitis at the time of their ifectio (23% for viral hepatitis B ad 20% for viral hepatitis C) ad oly 27% kew that they were at risk (both for viral hepatitis B ad C). Viral hepatitis why igorace is dagerous The log-term cosequeces of late diagosis liver cirrhosis ad liver cacer ca be severe ad potetially fatal. 75% to 85% of cases of primary liver cacer are attributable to chroic ifectios with viral hepatitis B or viral hepatitis C. 2 Liver cacer is the third highest cause of cacer deaths worldwide, ad i Europe, liver cacer-related deaths have icreased sigificatly over the past two decades (Figure 1). 1 Eurasia Harm Reductio Network (EHRN), HCV Ifectio i Europe, 1 October 2007, available at: 2 Bosch, FX, Ribes J, Diaz M, Cleries R., Primary Liver Cacer: Worldwide Icidece ad Treds. Gastroeterology 2004; 127:

23 Figure 1: Icreasig mortality due to liver cacer i Europe ( ) 3 Germay Austria Frace Italy Portugal Age adjusted mortality rate / me What is more, the peak i the umber of patiets sufferig from cirrhosis ad cacer, or of patiets waitig for a life-savig liver trasplat, has ot yet bee reached, as may of the chroically ifected have ot yet attaied the advaced stages of the disease. This is why the World Health Orgaisatio (WHO) has compared viral hepatitis to a viral time bomb. 4 However, despite the serious health risks associated with it, viral hepatitis is ot o the radar scree of decisio makers, ad the public is geerally ot aware of this threat. This lack of political will to itroduce strog measures to prevet the spread of viral hepatitis ad further the idetificatio of viral hepatitis patiets ot oly igores the huma sufferig caused by the disease, but also disregards the cosiderable socio-ecoomic burde placed o atioal health systems ad the ecoomy at large. Viral hepatitis what is beig doe to tackle it at EU level The EU is focused almost exclusively o primary prevetio; the prevetio of cotractig the virus. The importace of primary prevetio was highlighted i the 2006 Europea Parliamet Resolutio o protectig Europea healthcare workers from bloodbore ifectios due to eedle stick ijuries. 5 Oly oe EU iitiative has so far sought to promote case-fidig, the EU Coucil Recommedatio o drug-related harm 6, which advises Members States o how to idetify viral hepatitis ifected drug users. Agai, ELPA is supportive of this EU legislatio. However, there are other risk groups besides drug users, which eed to be specifically addressed as well with a view to idetify viral hepatitis carriers before it is too late. 3 Bosetti, C. et al. Treds i mortality from hepatocellular carcioma i Europe, Hepatology (2008) 48: World Health Orgaisatio, Viral Cacers Fact Sheet, available at

24 Report o Hepatitis Patiet Self-Help i Europe Methodology Approach I order to assess the activities ad the cotributio of self-help patiet groups across Europe, first as well as secod had iformatio has bee gathered. Give that this is the first evaluatio of its kid o a Europea scale, a survey has bee draw-up specifically for this purpose (see Aex II). Where ecessary, the survey has bee complemeted by additioal literature ad desk research. Survey Structure The survey cotais three sectios. The first is desiged to gather backgroud iformatio about the patiet self-help group icludig their activities, mai practices, liver disease focus ad workig methods. The secod sectio has bee desiged to extract quatitative as well as qualitative iformatio o the liver awareess raisig campaig carried out e.g. outreach activities, the tools used ad possible relatioship buildig with policy makers. The last sectio is dedicated to the evaluatio, which is maily targeted at assessig the results of the respective efforts, as well as the stadig the fight agaist viral hepatitis has i the coutry s public health programmes. Patiet Associatios I order to obtai a represetative picture of the patiet self-help activities as well as the cotext i which the associatios operate, iformatio from 20 patiet associatios from coutries all over Europe, icludig accessio coutries has bee gathered through the survey. Coutry Austria Belgium Belgium Bosia Herzegovia Bulgaria Croatia Frace Germay Germay Italy The Netherlads Polad Portugal Romaia Slovakia Spai Spai Swede UK UK Name of Patiet Associatio Hepatitis Aid Austria Carrefour Hépatites-Aide et Cotact (CHAC) Vereigig voor Hepatitis C Patiëte (VHC) The Chroic Viral Hepatitis Patiets Associatio, "B18" Hepasist HULOH/CATIH "Hepatos" SOS Hepatites Fédératio Deutsche Leberhilfe e.v. Deutsches Hepatitis C Forum e.v. Educazioe,iformazioe e Prevezioe sull'epatite C (EpaC) The Natioal Hepatitis Cetre The Star of Hope SOS Hépatites Portugal Sao-Hep HEP HELP KLUB Asociació Española de Efermos de Hepatitis C (AsoEEHC) Associació Catalaa de Malalts d'hepatitis (ASSCAT) Riksföreige Hepatit C (RHC) British Liver Trust The Hepatitis C Trust 24

25 Discussio ad Dialogue To esure the quality of the results, the survey has bee carried out i the respective atioal laguages where possible ad i most cases a traslated versio has also bee provided. The survey was the basis for a actual iterview, which was carried out by face-to-face meetigs where possible or by phoe. Viral hepatitis focus Whilst liver diseases are metioed i the survey ad i this report, the focus of ELPA (for capacity reasos) as well as for most patiet groups lies almost exclusively o viral hepatitis B ad C. These are the most frequet forms of liver disease ad if udiagosed ca lead to serious follow-o diseases such as liver cirrhosis ad liver cacer. Whilst most patiet associatios iterviewed provide services also for other liver diseases, such as Haemochromatosis, o-alcoholic fatty liver disease, Morbus Wilso, or autoimmue liver diseases, almost all have a strog focus o viral hepatitis. 17 out of the 20 patiet associatios have viral hepatitis eve icluded i their orgaisatio s ame. I light of this, a strog focus is placed o viral hepatitis also i this report ad a majority of examples relate to viral hepatitis. Defiitios For the purpose of this report, followig defiitios 7, draw-up by the World Health Orgaisatio (WHO) are used for primary ad secodary prevetio: Primary prevetio: This stage of prevetio covers all activities desiged to reduce the istaces of a illess i a populatio ad thus to reduce, as far as possible, the risk of ew cases appearig; i speech ad laguage therapy this maily covers iformatio ad health educatio of a populatio, as well as traiig all those who have a role to play with the populatio i questio. Secodary prevetio: This covers activities aimed at `reducig the prevalece of a illess i a populatio ad thus to reduce its duratio ; i speech ad laguage therapy this maily cocers idetificatio ad early screeig. I additio, screeig is uderstood as the examiatio of a group of usually asymptomatic idividuals to detect those with a high probability of havig or developig a give disease. 8 Limitatios The limitatios that were ecoutered i this process are twofold. Firstly, ot all EU Member States have liver patiet self-help groups or are yet fully established. Some coutries such as the Baltic States therefore remaied iaccessible for the purpose of this aalysis. Secodly, the survey as well as the evaluatio have bee carried out by ELPA ad are based o first had iformatio from the various patiet groups. While this provides a importat isight ito their work ad allows for key learigs to be idetified, the views of other stakeholders o patiet self-help such as policy makers, for istace, are ot captured. 7 World Health Orgaisatio defiitio draw-up i 1948, retrieved from August The America Heritage Medical Dictioary Copyright 2007, 2004 by Houghto Miffli Compay. Published by Houghto Miffli Compay.retrieved from August

26 Report o Hepatitis Patiet Self-Help i Europe Aalysis Patiet Associatios SIZE AND HUMAN RESOURCES The patiet associatios iterviewed for the purpose of this assessmet vary cosiderably i set-up, size ad staff. The largest patiet associatios i terms of employees are Sao-hep i Romaia (24 employees), the UK Hepatitis C Trust (16 employees) ad the British Liver Trust (16 employees). Takig voluteers ito accout, SOS Hepatites Fédératio, Hepatos from Croatia, Bulgaria s Hepasist, the Deutsche Leberhilfe, the Star of Hope from Polad ad AsoEEHC Spai ca also be added to this list. Figure 1: Number of Employees ad Voluteers per patiet associatio (250) Slovakia - HEP HELP KLUB Germay - DHCF Bulgaria - Hepasist Croatia - Hepatos The Netherlads - NHC UK - BLT Frace - SOS Hepatites Belgium - VHC Romaia - Sao-hep Italy - EpaC Spai - AEHC Bosia Herzegovia - B18 Polad - The Star of Hope Germay - Deutsche Leberhikfe Portugal - SOS Hépatites Belgium - CHAC Spai - ASSCAT Swede - RHC UK - The Hepatitis C Trust SOS Hepatites Fédératio Employees Voluteers 26

27 The work of voluteers is fudametal to the work of all patiet groups. For istace, Hep-Help from Slovakia, the Belgia orgaisatios VHC ad CHAC, as well as the Portuguese SOS Hepatites ad RHC Swede, work exclusively with voluteers. Figure 2 illustrates that 72% of the huma resources of the patiet associatios iterviewed are voluteers. Clearly, their status as voluteers has repercussios o the amout of work they ca shoulder. While the majority of the people workig for patiet groups are actual patiets, they are helped by a umber of voluteers of differet backgrouds icludig specialists, doctors, scietists ad former patiets. Figure 2: Percetage of employees ad voluteers i all patiet associatios iterviewed Figure 3: Sources of fiacig i % 28% 8.30% 11.95% 22.15% 17.90% 1.50% 72% 38.20% Employees Voluteers Private Doatios/Geeral Public Pharmaceutical idustry Idustry other tha pharmaceutical compaies Public sector/govermet fudig Other SOURCES OF FINANCING The apparet lack of professioal structures ad to some extet operatioal practices is also the result of the lack of fudig, which patiet groups are facig o a costat basis. Their struggle to receive fudig is reflected i the scattered ature of their sources of fiacig, as illustrated i figure 3. The pharmaceutical idustry is the major source of fiacig for the majority of patiet groups. This is ofte complemeted by public sector/govermet fudig ad doatios from the geeral public. Some patiet groups also egage i exceptioal activities for fud raisig such as the Chroic Viral Hepatitis Patiet Associatio B18 from Bosia-Herzegovia who orgaised a rock cocert to raise fuds i Patiet groups are frequetly beig criticised for acceptig fudig from the pharmaceutical idustry. I light of the difficulty of fidig alterative fudig sources ad give their fiacial situatio, patiet groups do ot have eough room for maoeuvre. I additio, all patiet associatios have diversified their fudig sources ad are therefore ot domiated by oe sigle pharmaceutical compay. 27

28 Report o Hepatitis Patiet Self-Help i Europe MAIN ACTIVITIES The patiet groups across Europe are active i a variety of ways. They egage mostly i cousellig ad awareess raisig campaigs (see Figure 4). I additio, participatig i scietific studies also costitutes a importat elemet i their work. Activities idicated for other iclude public policy ad free-of-charge screeig tests. The first core activity, cousellig, is fudametal to the objectives ad missios of each patiet group. Their cousellig activities etail direct iteractio with patiets to support them ad their families through iformatio o the disease, treatmet optios ad medical istitutios. As illustrated i Figure 5, half of all patiet groups iterviewed advice more tha 20 patiets a week, icludig up to 50 i the case of the UK Hepatitis C trust ad the British Liver Trust as well as Bulgaria s Hepasist, 30/40 i the case of the Portuguese SOS Hepatites ad eve up to 180 patiets beig advised by the Italia EPAC olus. Figure 4: Mai Activities of Patiet Associatios (%) Figure 5: Number of patiets advised per week (%) 16% 15% 14% 34% 50% 15% 36% 20% Couselig Awareess raisig campaig Participatio i studies Other Up to 5 Betwee 5 ad 10 Betwee 10 ad 20 More tha 20 I additio the psychological aspect of the cousellig work is sigificat ad ofte costitutes the majority of patiet groups cousellig activities. The psychological burde of the disease is a problem, which is largely eglected by medical cetres ad hospitals. Viral hepatitis is a disease that is highly stigmatised i the majority of coutries as it is ofte cosidered as self-iflicted, through for istace drug-use or prostitutio. The patiet groups added value to the few existig cotact poits available to patiets is clearly illustrated i this particular activity of psychological support. I some cases, assistace to receive legal support is also provided. 28

29 The secod core activity, awareess-raisig, aims at icreasig the kowledge of liver diseases amogst various target groups. As show i Figure 6, the geeral public, policy makers, healthcare professioals ad risk groups are idetified as the most importat target groups for this purpose. Figure 6: Target groups at which the awareess raisig campaigs are directed (%) 7.90% 18.40% Awareess-raisig campaigs ecompass a wide rage of activities ad ca be desiged relatively freely accordig to the specific eeds ad purpose. The most commo forms used by the patiet groups iterviewed are iformatio stads i public places, persoal meetigs with experts ad politicias as well as semiars ad roudtables. To spread iformatio ad as a meas of commuicatio, the iteret, s ad letters, leaflets, ewspapers, specialised jourals, televisio ad radio are beig used extesively % 25.00% 7.90% 19.70% Policy makers Isurace compaies Healthcare professioals Geeral public Risk Groups Other TARGETS OF AWARENESS RAISING CAMPAIGNS Up to 90% of ifected people are ot aware of their coditio. Out of those diagosed, 20% had ever heard of viral hepatitis at the time of their diagoses ad 27% did ot kow of their belogig to a risk group. As a result, both the geeral public ad specific risk groups are targets of disease-awareess campaigs coducted by the iterviewed patiet groups. The trigger for a awareess-campaig which usually lasts for two or three moths is the World Hepatitis Day (WHD), curretly o 19 May, which also sets the global theme of the campaig. Oly i Austria is WHD ot that importat a date, maily because of the saturatio of the Austria media. Some patiet groups, such as the Bulgaria Hepasist, Hepatos i Croatia, Leberhilfe i Germay or the British patiet groups have a secod, more home-grow campaig i the secod half of the year. I additio to distributig iformatio i form of flyers or brochures ad lauchig advertorials i the media, free public testig is offered. I additio to the geeral public, viral hepatitis risk groups, where the prevalece is higher tha i the total populatio, are the target for campaigs ad projects throughout the year: I Germay, the Deutsche Leberhilfe iitiated a project o viral hepatitis prevetio i the Ruhrgebiet i cooperatio with doctors with a Turkish immigrat backgroud, ad with the support of the miister for itegratio of North-Rhie-Westphalia. The doctors visit Turkish clubs ad cultural orgaisatios, to provide iformatio i Turkish about viral hepatitis B. This way, iformatio about the disease is dissemiated with the aim of reducig further ifectios i the Turkish migrat risk group. Some patiet groups ru projects raisig awareess of viral hepatitis, its risk groups ad trasmissio i prisos (Deutsches Hepatitis C Forum, Hepatitisshilfe Österreich) ad schools (Hepatitishilfe Österreich ad Romaia SANOHEP), or prevetig trasmissio at podologists or tattoo studios by defiig hygiee stadards. I the Netherlads projects are ogoig aimig at raisig awareess ad free screeig o viral hepatitis i several migrat populatios, icludig Chiese ad Turkish citizes. Aother importat target group for awareess-raisig are Healthcare professioals ad i particular geeral practitioers. They have bee described by all patiet groups as beig isufficietly iformed about the disease, sice they are i theory best placed to diagose the virus. 29

30 Report o Hepatitis Patiet Self-Help i Europe I practice, however, traiig programmes for geeral practitioers which specifically iclude liver diseases such as viral hepatitis do ot exist i ay of the coutries covered by the survey. Prompted by the atioal patiet groups, Spai, however, has bee willig to offer traiig semiars for geeral practitioers. Ufortuately, these were poorly atteded. The British Hepattis C Trust also experieced the difficulty of dissemiatig local examples of best practice i this cotext. Other patiet associatios orgaise such semiars themselves led by leadig hepatologists. The Belgia-Flemish patiet group VHC also publishes iformatio o viral hepatitis i the Huisarts, a ewspaper for geeral practitioers ad the British Hepatitis-C Trust also developed a olie learig tool o viral hepatitis C for geeral practitioers together with the Royal College of Geeral Practitioers. Cotact with policy makers has become a strog feature of patiet group activities, bearig witess to the fact that oly cocerted policy measures ca drive a sustaiable improvemet to the curret situatio. The Belgia-Walloia patiet group CHAC, for istace, has gaied support from four seators (Georges Dallemage (Cdh), Alai Destexhe (MR), Phippe Mahoux (PS) ad Isabelle Durat (Ecolo) of the four mai democratic parties to sig a charter to support CHACs activities. The Germa Deutsche Leberhilfe works closely with former health miister Ulla Schmidt, who is ow their patroess. The Spaish AsoEEHC is curretly i cotact with Rosa Ramírez Ferádez from the Health ad Cosumer Miistry after submittig a request for viral hepatitis C screeig. It has to be metioed however, that oly the orgaisatios with sufficiet resources, both huma ad fiacial, have bee able to egage i this political outreach. With the media beig geerally disiterested i viral hepatitis, patiet groups have sought to obtai public support from either celebrities who have suffered or are sufferig persoally from viral hepatitis or whose family members are vrial hepatitis patiets. Portugal, for istace, receives support from the musicias Ze Pedro, Zutos e Potapes, Kare Jardel ad Rui Reiho. The Belgia- Flemish orgaisatio VHC used as their champio Jaap Pijpe, a well kow TV persoality who ow publishes a magazie. The British Liver Trust is supported by Ady Fordham, a darts champio. Despite these successes, most patiet groups have ecoutered problems motivatig celebrities to make their experiece with liver diseases public, due to fears of stigmatisatio or possible implicatios for their image ad careers. I summary, patiet groups egage extesively with other stakeholders. I particular, the support received from specialists is already well established; celebrities have bee willig to some extet to cooperate; ad although buildig relatioships with policy makers is ot always a easy activity, sigificat progress has bee made. The most problematic iteractio has, however, tured out to be with the geeral practitioers, who very ofte are ot sufficietly traied to recogise the symptoms of certai liver diseases ad have bee reluctat to participate i traiigs or to provide support for awareess raisig campaigs. Evaluatio Oe ca evaluate the work of the patiet groups, as well as the geeral situatio cocerig viral hepatitis, usig differet parameters. As far as cousellig is cocered, patiet groups have successfully maaged to provide advice ad support to those who addressed them. Clearly, this work could be expaded, if greater ad more stable fiacial resources were available. As far as awareess-raisig is cocered, it is rather difficult to measure success: oe caot measure icreased awareess, ad it usually caot be lik it to patiet groups activities. I order to get some kid of idicatio, oe ca usually refer to the results of free testig offers, which ted to be very popular across Europe. I terms of icidece, these testig results usually match or surpass the data, provided by official sources. I Polad a screeig campaig was carried out i the Silesia regio people were tested for viral hepatitis C, which revealed a idetificatio level of 1.5%. The campaig was widely picked up by the media ad aroud 50 iformatio TV spots appeared. Similarly, i Blackpool, a area with the highest rates of mortality due to chroic liver disease i Eglad, the British Liver Trust idetified 64% of those tested as havig HCV. 30

31 The availability of treatmet is ot a issue i the majority of Member States, accordig to the patiet groups questioed. I particular, Easter Europea coutries, such as Bulgaria or Croatia have recetly made tremedous progress ad provided special fuds for viral hepatitis treatmet, owig largely to the efforts of the patiet groups i questio. Waitig times for treatmet have also bee greatly reduced i these coutries. O the other had, waitig times i Polad, ca still amout to 3-5 years. Bulgaria was also oe of the first coutries to itroduce childhood vacciatio as early as Croatia followed i While both coutries state the eed to further improve vacciatio to also capture those groups who were bor before this date, the differece is quite remarkable to Wester coutries, such as the UK, Swede ad the Netherlads, which have o uiversal vacciatio for viral hepatitis B i place ad reimbursemet is ot always guarateed. Screeig, the targeted case fidig of those at risk, is the biggest cocer of patiet groups: with the exceptio of Frace ad Scotlad, o govermet has made sustaiable efforts to improve this. Progress has sometimes bee made at a local level (e.g. Eglad), leadig frequetly to delays i access to treatmet. This might actually be the key reaso why policymakers are so reluctat to egage i screeig: they might thik that oe more patiet idetified meas oe more patiet to treat. The relatioships with policymakers take up more ad more room i patiet groups activities, provided they have sufficiet staff to maage those. However, this does ot mea that they ecessarily lead to outcomes. Policymakers, i particular those i public office, ted to be afraid of the stigma associated with the disease (drug-user disease) ad prefer to become active i other, more tagible disease areas with a worthier cause. Furthermore, some coutries focus o Malaria or Tuberculosis, which is also mirrored by the priorities of the WHO s Global Fud, ad are hece also istitutioalised priorities. Austria ad Germay are both examples where the govermet s iterest i viral hepatitis ad liver diseases is very low, despite various efforts o behalf of both patiets ad specialist associatios, as well as idividual policymakers. O the other had, the UK ad Croatia are examples were the adoptio of a liver strategy has either just bee achieved or is withi reach. It remais to be see how ad whe this will actually be implemeted. Competitio sometimes proves helpful i this cotext: The Scottish hepatitis C strategy, triggered by the Royal College of Physicias i 2004, served as a cuttig-edge example, which paved the way for greater efforts i Eglad ad Wales. Furthermore, the Croatia Hepatos was eve made the WHO atioal focal poit for viral hepatitis, upo recommedatio of the govermet, receivig WHO fudig for 4 years. Challeges The majority of the patiet groups iterviewed have idetified the followig three challeges: Availability of data: there is oly isufficiet data available. This cocers ot oly scietific data, but also health ecoomic data, etc. Despite the active ivolvemet of some patiet groups (the Italia Epac was recetly asked by the Miistry of Health to coduct a study o prevetio), this ca oly be chaged through more cosistet efforts. Stigma: Viral hepatitis is the most stigmatised disease the elemet of guilt plays a icredibly large part i the decisios of those who could or should otherwise make a differece to public health; Health professioals, i particular geeral practitioers, have o iterest ad o icetive to become more educated as far as viral hepatitis is cocered. The experiece i Spai, where govermet sposored semiars for geeral practitioers were badly atteded, is a proof poit for the lack of iterest. The case of Bulgaria, where geeral practitioers are oly allowed to coduct liver ezyme tests whe jaudice is apparet (by which time they are actually superfluous), is a case i poit for the lack of icetives. 31

32 Report o Hepatitis Patiet Self-Help i Europe Coclusios ad Recommedatios The survey coducted by ELPA has sought to highlight the work of viral hepatitis patiet groups throughout Europe, with a view to assessig atioal public health policies related to viral hepatitis sice the begiig of patiet advocacy. I a utshell, patiet groups are doig a fatastic job, cosiderig the circumstaces uder which they operate: viral hepatitis patiet groups are usually small scale orgaisatios, with voluteers beig essetial for the work of more tha 75% of the patiet groups questioed. Fudig is frequetly a problem, which ca make advaced plaig difficult. Furthermore, the overall lack of iterest as regards viral hepatitis o behalf of the media ad i particular health professioals has proved challegig. Noetheless, patiet groups have maaged to achieve sigificat results i a umber of areas over recet years, gradually icreasig their competeces ad output. With health professioals uder time ad budget costraits, they are the oly body to provide fellow patiets with psychological ad practical support both at the time of diagosis ad throughout treatmet, hece makig a sigificat cotributio to patiet adherece, which must ot be uderestimated. Furthermore, if it was ot for the cosistet efforts of patiet groups, i the majority of coutries ivestigated there would ot be ay viral hepatitis awareess-raisig campaigs. Patiet groups fill the gap, frequetly with official support ad approval, tryig to tackle the challege of cosistetly low public awareess. The good work patiet groups have bee doig has proved to be a asset whe they sought to make cotacts with policymakers. This eve led to situatios where govermets have recommeded the patiet group for certai tasks, or where govermets commissioed patiet groups with surveys or reports. Clearly, good liks to policymakers are ot automatically leadig to viral hepatitis-related improvemets i the areas of prevetio, diagosis ad access to treatmet. However, if such improvemets did occur expasio of childhood vacciatio programmes for viral hepatitis B, the lauch of a liver strategy, reductio i waitig times for treatmet, extra fudig for viral hepatitis drugs these developmets could be liked to the efforts of a patiet group. Geerally, those coutries fare best which recogise the added value patiet groups ca provide, ad support them i their work with a sustaiable policy programme which is illustrated below. With vacciatio ad treatmet havig improved ot throughout Europe, but i quite a few coutries, the biggest health systems challege for patiet groups is i the area of secodary prevetio, screeig. Targeted screeig or case-fidig amogst risk groups has prove effective i substatially icreasig the umber of idetified viral hepatitis patiets ad eabled them to receive treatmet, where appropriate, with a view to prevetig serious follow-o diseases such as liver cirrhosis ad/ or cacer. I reality, however, geeral practitioers across Europe hardly have viral hepatitis o their radar scree at all, ad efforts by patiet groups ad specialists, eve supported by govermet fudig, have frequetly bee made i vai. What is therefore eeded is a proper atioal strategy to make a differece ad reduce the burde of the disease by idetifyig ad treatig a greater umber of viral hepatitis carriers. While examples of such good practice do exist, they are cofied to a fairly limited territory, i.e. i regios like Scotlad or EU Member States such as Frace. At a time whe thakfully Europe is becomig more ad more borderless ad people have the right to travel ad settle wherever it pleases them, the iertia of atioal decisio-makers whe it comes to puttig i place policy measures is eve more usettlig ad dagerous. As with all commuicable diseases, viral hepatitis does ot kow ay borders, ad efforts i oe Europea coutry ca be udermied by less cosistet efforts i a eighbourig state. There is therefore a clear eed for greater cross-border coordiatio ad a EU-wide approach o how to implemet screeig strategies ad target these to risk groups across Europe. 32

33 A Coucil Recommedatio o viral hepatitis B ad C screeig of risk groups would be a powerful tool i this cotext. Although ot legally bidig, such a recommedatio is siged by all 27 health miisters of the Europea Uio ad hece represets a importat political commitmet. Furthermore, member states would receive guidace o how to improve their efforts i detectig ad treatig uidetified viral hepatitis patiets. If Europe is serious about tacklig its viral hepatitis challege, Member States, guided by the EU, eed to agree o a cocerted effort. Waitig util the viral hepatitis problem will die out is ot a optio. Aex I: Coutry Sheets This aex cotais 16 coutry iformatio sheets that have bee put together o the basis of the iformatio received durig the iterviews with the patiet groups. Each coutry sheet provides a overview o their assessmets of the situatio i the respective coutries icludig the estimated viral hepatitis prevalece, geeral treds, as well as access to treatmet ad testig. I additio, backgroud iformatio o the atioal patiet groups is provided together with a overview of their mai activities ad their cotributio ad achievemets to date. Lastly, the coutry sheets cotai a summary of the mai opportuities ad challeges ahead. Austria THE SITUATION IN AUSTRIA Estimated prevalece I Austria the estimated prevalece for viral hepatitis B is 0.9% ad for viral hepatitis C it is 1.4%. Treds While the tred of viral hepatitis B ifectios is goig dow because of free childhood vacciatio, the effect is ot very oticeable because of migratio from high-edemic coutries. Prevetio & Testig Free childhood vacciatio is available util the age of 15. However o targeted efforts to idetify viral hepatitis cases are beig udertake. Treatmet All stadard treatmets are reimbursable i Austria. PATIENT GROUP IN AUSTRIA Hepatitis Hilfe Österreich Backgroud iformatio Hepatitis Hilfe Österreich was fouded i 1995 ad works with 150 voluteers across Austria. Hepatitis Hilfe Österreich focuses primarily o viral hepatitis B ad C, but also deals with fatty liver, cirrhosis ad cacer, followed by haemachromatosis. Mai activities Apart from offerig cousellig, the Hepatitis Hilfe Österreich focuses o awareess raisig activities directed at the geeral public ad healthcare professioals as well as at risk groups ad prisoers. Parterships with celebrities or professioal associatios are difficult. Noetheless, a cosesus statemet with a geeral practitioer associatio could be adopted. Due to a certai oversaturatio of the Austria media, as well as fear of stigma o behalf of politicias ad celebrity patiets, the World Hepatitis Day is ot as big a evet as i Germay. 33

34 Report o Hepatitis Patiet Self-Help i Europe Cotributio ad Achievemets I cooperatio with regioal sick fuds, so-called ifo-poits for a healthy liver have bee created, where patiets ad their carers ca obtai free ad aoymous support from teams icludig hepatologists/gastroeterologists ad psychologists. A seal of accreditatio for piercers, tattoo artists, podologists ad maicurists has also bee itroduced. OPPORTUNITIES AND CHALLENGES AHEAD A major challege faced by the Hepatitis Hilfe Österreich is to achieve a political statemet from the govermet to promote risk group-specific screeig ad the iclusio of viral hepatitis i geeral check-ups. Apart from isufficiet educatio amogst healthcare professioals ad i particular geeral practitioers, the biggest challege i Austria is the stigma which a viral hepatitis ifectio etails. Other diseases such as cacer are far more popular with the media ad politicias. Belgium THE SITUATION IN BELGIUM Estimated prevalece I Walloia the estimated prevalece of viral hepatitis B is 0.8% ad that of viral hepatitis C is 1%. While the prevalece of viral hepatitis C is more or less stable, the prevalece of viral hepatitis B is o the rise, as a cosequece of icreased migratio. I Fladers the prevalece of viral hepatitis C is also 1%. Treds There is a serious igorace of, ad lack of iterest i, viral hepatitis from policy makers, healthcare professioals ad the geeral public. Despite the worryig figures, there is o or oly scattered atioal or regioal policies for primary ad/or secodary prevetio of viral hepatitis. Viral hepatitis is ot o the radar scree of policymakers, i particular compared to other diseases such as HIV/AIDS, which receive more public attetio. Cocrete policies aimed at primary ad secodary prevetio of viral hepatitis are o-existet. Little progress has bee made at the political level ad there is o atioal awareess raisig campaig i Belgium, however this is chagig slightly. Treatmet While access to treatmet is satisfactory ad waitig times are short, there are cosiderable gaps i curret reimbursemet policies these policies are isufficiet for viral hepatitis C, ad the situatio has oly recetly improved for viral hepatitis B. Testig Viral hepatitis tests are ot icluded i geeral check-ups. PATIENT GROUPS IN BELGIUM Vereigig voor Hepatitis C Patiete (VHC) Backgroud iformatio The Vereigig voor Hepatitis C Patiete (VHC) is a Flemish orgaisatio that was fouded i 1989 to advise ad help patiets with viral hepatitis ad to raise awareess of the disease. It has aroud 500 members. I Fladers there is o other patiet orgaisatio that focuses specifically o viral hepatitis. Patiets maily get iformatio from doctors, libraries or the iteret. They also receive iformatio through other orgaizatios which are ot specifically focused o viral hepatitis like Sesoa (STD) or drug addict groups. 34

35 Mai Activities Besides couselig, VHC focuses o raisig awareess of viral hepatitis. Although it has limited resources, the orgaisatio tries to reach as may people as possible. The campaig is targeted towards policy makers, isurace compaies, healthcare professioals (especially geeral practitioers) ad several risk groups (prisoers, drugs addicts, etc.). The orgaisatio works together with may stakeholders like the BASL (Belgia Associatio for the Study of the Liver), Sesoa, de Sleutel (drug addicts), vzw Trefput (umbrella orgaisatio of patiet orgaizatios), ad also prisos. The VHC orgaises may differet activities like semiars, symposiums, or expert meetigs. It also provides iformatio stads ad reaches out towards the media. Cotributio ad Achievemets Oe of their latest ad most successful campaigs was the orgaisatio of a academic sessio i November 2009 which was atteded by policy makers (icludig the goveror of Atwerp) ad healthcare specialists. This activity eve led to a legislative proposal. I additio, the VHC recetly published a book with medical advice ad testimoials from patiets. It has also set out letters ad materials to all muicipalities to support awareess-raisig o viral hepatitis, which has already received some positive feedback. At the momet VHC is also tryig to itroduce viral hepatitis ito a soap o TV. I the past they maaged to use celebrities to promote their cause ad have succeeded i the past to have a godfather (Jaak Pijpe kow from TV ad publishes a magazie) ad a godmother (Miss Belgia Beauty). Despite these efforts the VHC is still experiecig a lack of support ad iterest from policy makers ad doctors. The VHC maily regrets that there is still o atioal awareess raisig campaig at political level. Oe of the reasos for the lack of success is the complex structure of the Belgia state which makes it difficult to kow who to reach out to. Carrefour Hépatites Aide et Cotact (CHAC) Backgroud iformatio Carrefour Hépatites Aide et Cotact (CHAC) was fouded i 2001 with the overall goal to help those ifected with all forms of viral hepatitis ad their families. The associatio has 5 voluteers, but their egagemet depeds o the specific activities udertake. CHAC provides psychosocial couselig to viral hepatitis patiets, ad coducts umerous activities at differet political levels to improve curret regioal legislatio related to viral hepatitis screeig ad access to treatmet. I particular, CHAC has coducted successful awareess raisig campaigs i schools ad amogst healthcare professioals (doctors, urses) ad isuraces. Mai activities The orgaisatio promotes umerous awareess raisig campaigs which are directed maily at policy-makers, healthcare professioals, risk groups, relevat third party stakeholders (AIDS groups, orga doatio associatios, orgaisatios combatig alcoholism etc.) ad the wider public. CHAC coducts the campaigs essetially through semiars, roudtables, expert meetigs or public iformatio stads. Furthermore, CHAC orgaises media outreach activities i order to promote public support for tacklig the disease. CHAC also regularly arrages bilateral meetigs with disease experts ad supports political declaratios both at the regioal (Walloia) ad the Europea level. Cotributio ad Achievemets CHAC has bee successful i formig alliaces with geeral practitioers, key politicias ad relevat disease associatios. The associatio has maaged to raise awareess of viral hepatitis over the past few years ad has achieved cosiderable successes at the political level. I particular, the associatio has bee able to secure the support of four coucillors represetig the four mai political parties i Walloia, who have co-siged a charter to support CHAC s activities. OPPORTUNITIES AND CHALLENGES AHEAD Oe of the mai challeges to overcome i Belgium is the formal iclusio of primary ad secodary prevetio ito the atioal healthcare system. I geeral, raisig further awareess of the disease amogst policymakers, healthcare professioals ad the wider public remais a priority for both orgaisatios. Policy makers should develop ad implemet a sustaiable programme for viral hepatitis ad a screeig strategy. 35

36 Report o Hepatitis Patiet Self-Help i Europe Bosia-Herzegovia THE SITUATION IN BOSNIA - HERZEGOVINA Estimated prevalece I Bosia-Herzegovia (BH) the prevalece of viral hepatitis is of 1% for the hepatitis C virus ad of 2% for viral hepatitis B. Testig ad treatmets (primary ad secodary prevetio) are both icluded i the atioal healthcare system. Treds To date there is isufficiet data to assess whether the situatio is improvig. However, as the health services are improvig ad govermets make improved health iitiatives more widely available it is expected that ew ifectios will dimiish i the comig years. Treatmet Treatmet is icluded i the atioal healthcare system ad patiets are able to access it by lookig for a public health cetre. However, the atioal healthcare system i Bosia-Herzegovia is divided ito three regios. This meas that differet regios get access to medicatio at differet times. I additio, there are differet waitig times ad differet levels for quality of treatmet. Govermet efforts to miimize these disparities do however exist. Testig Testig for viral hepatitis ca be carried out i public healthcare ceters for free but they are ot madatory. PATIENT GROUPS IN BOSNIA-HERZEGOVINA B18 Group Backgroud iformatio The Chroic Viral Hepatitis Associatio B18 was fouded i Bosia-Herzegovia i 2004 ad aims at supportig viral hepatitis patiets i dealig with their difficulties related to the disease. The B18 reaches out to about 20 viral hepatitis B ad C patiets per week ad provides them with adequate ad professioal cousellig as well as with the space ad possibility to iteract with each other ad to exchage views. Mai activities Awareess raisig campaigs orgaised by B18 are directed at both policy-makers ad the geeral public with a relatively positive result. The B18 group orgaises everythig from semiars to expert meetigs, to iformatio stads i public places ad free testig opportuities. The orgaisatio focuses o iformig the populatio o prevetive behaviours ad how to deal with the virus at a persoal ad societal level. Cotributio ad Achievemets The orgaisatio s greatest achievemet was the iclusio, i 2005, of viral hepatitis treatmet available ito the atioal healthcare system after a log ad successful media outreach campaig. Its atioal relevace as a actor i the field is marked by its positive ad effective work i iformig people ad supportig patiets at a basic primary stage. The B18 orgaisatio meets with policy-makers aroud twice per year. OPPORTUNITIES AND CHALLENGES AHEAD After havig secured the right to treatmet at a atioal level, the mai challege is to esure the good fuctioig of the healthcare providers ad the proper attetio to the disease from healthcare staff. Additioally, cooperatio with policy-makers still eeds to be improved at a local, regioal ad atioal level i order to secure greater ifluecig capacities. 36

37 Bulgaria THE SITUATION IN BULGARIA Estimated prevalece Bulgaria does ot have official data o the prevalece of viral hepatitis. It is however estimated that for viral hepatitis C, the prevalece rages betwee 1% ad 3%. These figures are cofirmed by the results of patiet group s Hepasist aoymous free testig activities. For viral hepatitis B estimates vary betwee 4% ad 8%, which is agai cofirmed by Hepasist s ow testig iitiatives. Treds The tred for viral hepatitis C is risig but decliig for viral hepatitis B thaks to childhood vacciatio. Treatmet After the govermet s decisio i 2009 to remove the cap o the umber of people which ca be treated, people receivig treatmet tripled. All state of the art medicie is available ow. Whilst treatmet schemes still eed to be optimized (e.g. curretly, drug users do ot receive treatmet), waitig time also improved sigificatly sice 2009 (from 2 years to 4-6 moths). Prevetio & Testig Bulgaria was oe of the first coutries i Europe to itroduce childhood vacciatio i However, there are still gaps amog vulerable groups, e.g. Siti ad Roma, ad cosiderable efforts eed to be made to capture age groups bor before No special programmes for secodary prevetio or testig exist. For example, medical doctors are oly allowed to udertake ALT tests, whe the patiets already suffer from jaudice. PATIENT GROUP IN BULGARIA Hepasist Backgroud iformatio Hepasist is the atioal associatio for the fight agaist viral hepatitis i Bulgaria. It was fouded i 2005 ad works with 5 employees ad 15 voluteers across their three offices, their mai office is i Sofia ad the other two are regioal offices. Their missio is to raise awareess of viral hepatitis ad defedig patiets rights. I Bulgaria, the geeral trust i the public health system is very low. Hepasist therefore recommeds cliics ad facilitates the cotact to specialist. I additio, there is a NGO specialised i the provisio of psychological support durig treatmet. Hepasist primarily deals with viral hepatitis B ad C patiets (equally importat). These are followed by viral hepatitis A patiets, the cirrhosis/ liver cacer patiets ad lastly alcohol-related hepatitis ad haemachromatosis. Mai activities Apart from couselig, the awareess-raisig of viral hepatitis amogst risk groups, healthcare professioals ad the geeral public, as well as the provisio of advice to policymakers are the mai activities of Hepasist. Twice a year, Hepasist rus a two-moth log campaig oe o the occasio of World Hepatitis Day ad the other, more domestic, campaig i September/ October, reachig out to the media ad offerig free testigs. Hepasist is i close cooperatio with a cross-party group i the Bulgaria Parliamet o social diseases. Whilst the relatioship with the atioal GP associatio is patchy, Hepasist has lauched a joit iitiative with the Bulgaria Detist Associatio to promote the prevetio of viral hepatitis ifectio at the detist. Cotributio ad Achievemets Rather spectacularly, Hepasist succeeded i makig viral hepatitis a topic i the Bulgaria versio of the popular TV show, Big Brother o the occasio of the World Hepatitis Day 2009, raisig awareess of the diseases, its risk groups ad the eed to get tested. Furthermore, they campaiged actively ad successfully for improved access to medicatio. 37

38 Report o Hepatitis Patiet Self-Help i Europe OPPORTUNITIES AND CHALLENGES AHEAD The biggest challeges are the lack of educatio amogst geeral practitioers, the lack of good prevalece data ad the geeral lack of fudig available for the prevetio of the disease. The Departmet of Health i Bulgaria cocetrates o AIDS, malaria ad tuberculosis, due amog other reasos to the fudig received from the Global Fud. Other diseases are also more attractive, as they are more tagible. Furthermore, liver ezyme tests ad/or viral hepatitis tests should be part of the aual check-up that all patiets are etitled to oce a year ad free of charge. Furthermore, the Miistry of Health should adopt ad implemet a programme for primary (prevetio of dissemiatio) ad secodary (case-fidig through testig) prevetio. Croatia THE SITUATION IN CROATIA Estimated prevalece The estimated prevalece of viral hepatitis B i Croatia is 1% ad 1.3% for viral hepatitis C. Treds Viral hepatitis is apparetly o the rise. With regard to viral hepatitis B this is maily due to the exogeous populatio growth, triggered by migratio from Bosia after the Bosia War. This eutralizes the positive effects achieved through the itroductio of viral hepatitis B vacciatio i Prevetio & Testig Viral hepatitis B vacciatio is available for all 12 year olds sice 1998; i additio ewbor vacciatio has bee itroduced i 2007 ad has bee occasioally complemeted by catch-up programmes i several couties to capture the remaiig age groups. While progress has bee made i secodary prevetio, the level still has to be improved sigificatly. Treatmet Gold stadard treatmet for viral hepatitis C patiets has bee achieved thaks to viral hepatitis beig icluded i a special fud for high-quality drugs. However, oly oe treatmet was registered for viral hepatitis B. Sice July 2010 two more drugs became available i Croatia. The waitig time for treatmet for viral hepatitis C has bee reduced from 2 to 3 years i 2006 to a average of oly 2 moths to date. PATIENT GROUP IN CROATIA Hepatos Backgroud iformatio The Croatia Associatio of treated ad ill with viral hepatitis - Hepatos was fouded i 2000 ad works with 4 employees ad 23 voluteers. Their headquarters is situated i Split with two regioal offices i two additioal tows. Hepatos was primarily cocered with viral hepatitis C, but owadays it is cocered with viral hepatitis B ad viral hepatitis C ad other viral hepatides. For patiets with cirrhosis ad/or liver cacer, Hepatos facilitates cotacts with specialists. Hepatos egages maily with patiets directly give that medical staff do ot have the capacity to provide the ecessary iformatio or to offer free psychological support. Their missio is to egage i local, atioal ad iteratioal activities aimig at the prevetio of the spreadig of the disease, decreasig discrimiatio ad raisig the quality of life of patiets ad families. Mai activities I additio to the cousellig of patiets, Hepatos udertakes a aual campaig to icrease awareess of viral hepatitis amogst healthcare professioals, policymakers, risk groups ad the public at large. This campaig usually lasts for two moths aroud World Hepatitis Day, icludig media appearaces (402 hits i 2009 versus 17 i 2003) ad the orgaisatio of public evets. Hepatos hosts semiars ad roudtables with policymakers ad public health experts, ad offers free testig. 38

39 Hepatos has cooperatio agreemets with the respective referral cetres of the atioal Miistry of Health ad Social Welfare for chroic liver diseases ad that for diagosis ad treatmet of viral hepatitis. Upo recommedatio by the Croatia Miistry of Health, Hepatos was made the WHO atioal focal poit for viral hepatitis. Hepatos also works i partership with the atioal associatio of gastroeterologists ad ca rely o celebrity patiets for testimoials. I additio, the WHO fudig eables projects to promote geeral practitioer educatio, as well as adherece amogst drug addicts. Cotributio ad Achievemets Hepatos has successfully campaiged for better access to treatmet ad childhood vacciatio. Politically, Hepatos was the mai driver behid a resolutio of the Croatia Parliamet o the fight agaist viral hepatitis i The resolutio was complemeted by a cosesus statemet from represetatives from the health ad NGO sector cocerig a atioal strategy for combatig viral hepatitis. OPPORTUNITIES AND CHALLENGES AHEAD The adoptio ad implemetatio of cocrete measures, to promote risk group specific screeig remais Hepatos mai goal. Noetheless, the lack of educatio o viral hepatitis amogst healthcare professioals ad the lack of good data are see as the biggest challege by Hepatos. Furthermore, other diseases get more attetio due to WHO Global Fud activities. For the future, it will be importat to esure that the atioal strategy will be coverted ito a cocrete actio pla which all cocered stakeholders are committed to implemetig. Frace THE SITUATION IN FRANCE Estimated prevalece I Frace the prevalece of viral hepatitis is aroud 0,89% for viral hepatitis C ad 0.68% for viral hepatitis B. Frace is oe of the few coutries i the EU which keeps track of official viral hepatitis data. Treds The Istitut de Veille Saitaire carried out a prevalece study i , which foud that whilst the prevalece of viral hepatitis C is relatively stable, the prevalece for viral hepatitis B had bee uderestimated. Uder the third Natioal Pla for the fight agaist viral hepatitis B ad C (Pla atioal de lutte cotre les hépatites B et C ) aother prevalece survey is foresee. I additio, some groups, such as immigrats who come from coutries where prevetio is ot i place, might suggest a ew icrease i the prevalece of viral hepatitis, which is ot etirely captured i the statistics. Vacciatio agaist viral hepatitis B is free of charge i Frace; however 60 % of all teeagers are ot vacciated, which represets a serious threat for further viral hepatitis B ifectios i the future. The vacciatio of ewbors, however, is improvig, from 20% beig vacciated i 1997 to 60 % receivig vacciatio today. Treatmet The Frech atioal health system icludes primary ad secodary prevetio ad recetly reviewed its viral hepatitis-specific actio, leadig to the approval of the third Natioal Pla for the fight agaist viral hepatitis B ad C for the period The pla recogises atioal shortcomigs i prevetio ad screeig, ad establishes goal-orieted measures for the future. Treatmet is accessible i Frace; however patiets usually eed a referral to a specialist from their geeral practitioer. A reimbursemet scheme is also available for the patiets; oetheless, early diagosis remais a challege. 39

40 Report o Hepatitis Patiet Self-Help i Europe Testig Patiets ca request to be tested for viral hepatitis ad ca get referred to a specialist by their geeral practitioer. Screeig iitiatives are icluded i the viral hepatitis-prevetio programme. Patiet groups edorse these ad emphasise that screeig is most effective if carried out i a targeted way i high risk groups. PATIENT GROUPS IN FRANCE SOS Hépatites Fédératio Backgroud iformatio The SOS Hépatites Fédératio was fouded i The orgaisatio is actively ivolved i awareess raisig campaigs ad also participates i a umber of studies, icludig iformatio guides, statistics ad reports o the viral hepatitis situatio i Frace. The mai aim of SOS Hépatites is to support ad defed all those who suffer from viral hepatitis, o matter the type of virus or the way they were ifected. Awareess raisig campaig The Federatio promotes ad carries out varied campaigs aimed at risk groups, the geeral public ad healthcare professioals. It resorts to usig all available istrumets (iteret, documets, studies, face to face meetigs) ad their campaigs iclude iformatio stads, outreach efforts, meetigs with experts ad the use of media, icludig televisio. The federatio is successful i attractig supporters from the geeral public, the media, healthcare professioals ad some policy-makers. The use of scietific data as well as publicatios i specialised studies are importat elemets i their work. While iteractio with policy makers is ot stadardised, SOS Hépatites is i touch with relevat cotacts at the political level ad is iteractig with these o a ad-hoc basis. For 7 years, SOS Hépatites has bee traiig geeral practitioers i the framework of a special programme focusig o Therapeutic Educatio (more tha 1200 geeral practitioers have bee traied to date). Cotributio ad Achievemets Over the past years, SOS Hépatites has maaged to achieve progress i a umber of areas. Amog others, the federatio maaged to be represeted ad make its voice heard i a umber of forums icludig the Coseil d admiistratio des hôpitaux, the Commissio régioale de la saté, the expert group Haute autorité de saté, the Natioal Research Agecy for HIV/Aids ad Viral Hepatitis (Agece atioale de recherches sur le sida et les hépatites virales ANRS), ad the Natioal Health ad Medical Research Istitute (Istitut atioal de la saté et de la recherche médicale Iserm), as well as the Collectif Iter Associatif sur la saté, which is a strog lobby associatio composed of a umber of differet disease groups The Vice-Presidet of SOS Hépatites is also the Vice-Presidet of the atioal committee givig follow-up to the atioal pla for the fight agaist viral hepatitis B ad C. The Federatio has also asked the Miister of Health Roselye Bachelot-Narqui to promote Frace s best practices i the field of viral hepatitis at the Europea level. Aother major achievemet has also bee the programme o therapeutic educatio of the patiet by the HAS (Haute Autorité de Saté), which has bee icluded i a law (loi Hôpital, Patiets, Saté et Territoires - HPST) that provides a defiitio o therapeutic educatio. OPPORTUNITIES AND CHALLENGES AHEAD Overall, the Frech system is at the forefrot i the field of viral hepatitis prevetio i Europe. The atioal pla for the fight agaist viral hepatitis B ad C icludes primary as well as secodary prevetio, which recogises the eed for political iitiatives i this disease area. Noetheless, SOS Hépatites cotiues to face the challege to fight viral hepatitis by detectig all those who are ifected whilst simultaeously providig support i their daily life. Furthermore, at the political level, it eeds to be esured that the disease receives sufficiet cosideratio ad fudig, give that other diseases like AIDS are cosidered a eve greater health threat by policy makers. While the atioal pla is a importat milestoe for progress i this field, adequate follow-up to the actios outlied i the pla eeds to be give i practice. 40

41 Germay THE SITUATION IN GERMANY Estimated prevalece The official umbers i Germay idicate that people (0.5%) are ifected with viral hepatitis B. The same official umbers apply to the prevalece of viral hepatitis C. However, recet trials ad screeigs show that the prevalece may be higher. A study carried out by Professor Berg (Charite 2009), estimates that 2.4% of the populatio is ifected with the hepatitis C virus. Although the overall tred is cosidered to be stable the prevalece i the drug scee is o the rise. Treds The geeral public iterest i viral hepatitis has bee growig but there is still either a atioal govermet-led strategy or viral hepatitis screeig. Primary ad secodary prevetio are still iadequate to date. Vacciatio is geerally reimbursed for childre ad teeagers up to 18 years, ad risk groups. Some isurace compaies also reimburse travel vacciatios for adults, especially o busiess trips; however there is a geeral tred of vacciatio tiredess i particular by parets i Germay. The govermet does ot participate i ay viral hepatitis awareess raisig activity ad there is o systematic screeig strategy i place. I additio, the vacciatio rates for viral hepatitis B are extremely low amog for istace diabetics ad other liver diseases. Treatmet Access to treatmet is adequate i Germay. Oce the patiet has bee diagosed, the appropriate treatmet is available, ad waitig times are usually very short (treatmet ca be made available after oe or two weeks). The legal isurace GKV (Gesetzliche Krakeversicherug) i Germay esures that reimbursemet for treatmet is available for everyoe. Testig A patiet ca request a liver test or a atibody test for viral hepatitis B ad C to be carried out but these are ot icluded i a ormal blood test or are they icluded i the post-35 check-up. PATIENT GROUPS IN GERMANY Deutsche Leberhilfe e.v. Backgroud iformatio The Deutsche Leberhilfe e.v. has bee established i 1987 ad operates all over Germay. Its missio is to help liver patiets to help themselves. They ecourage ad support prevetio as well as early diagosis. I case of specific medical questios, the Deutsche Leberhilfe e.v. is assisted by specialised scietists ad hepatologists. Mai activities The Deutsche Leberhilfe e.v. is the cetral iformatio office for liver patiets i Germay ad offers couselig via the phoe, ad letters. Extesive iformatio is beig distributed to patiets ad relatives. I additio, their awareess raisig campaig icludes extesive activities ivolvig semiars, expert meetigs, face to face meetigs with politicias, media outreach ad the use of studies as well as scietific data ad cost effectiveess studies. I additio, the Deutsche Leberhilfe e.v. closely cooperates with the Germa Liver Foudatio (Deutsche Leberstiftug). Cotributio ad Achievemets Log-term relatioships have bee established over recet years ot oly with leadig hepatologists but also with oe of the former health miister (who is their patroess) ad various members of the Germa govermet icludig the Health Miistry. The greatest achievemet to date is the establishmet of a Natioal Liver Day o 20 November every year as well as successful activities (e.g. free liver testig i over 25 cities) o World Hepatitis Day. The creatio of special programmes for viral hepatitis B ad C has bee achieved. Their mai challege cosists of a lack of fudig ad limited iterest of the govermet i liver diseases ad viral hepatitis i particular. 41

42 Report o Hepatitis Patiet Self-Help i Europe Deutsches Hepatitis C Forum e.v.(dhcf) Backgroud iformatio The DHCF was fouded i 1997 ad works exclusively with ad for viral hepatitis C patiets. Its missio is to raise awareess of the disease through public iformatio. Advisory services are offered across Germay. The DHCF does ot have a fixed office but bases its work o its olie platform. Of the 13 voluteers, 7 are actively ivolved i providig cousellig, workig o the awareess raisig campaig ad ruig the iformatio desk. Mai activities The DHCF is collaboratig closely with the Deutsche Leberhilfe ad Deutsche Leberstiftug. They do ot have their ow sesibilisatio/political campaig for viral hepatitis, however they work with the other two orgaisatios o occasios such as the World Hepatitis Day ad the Germa Liver Day. The DHCF works directly with patiets ad provides cousellig services. They have a close relatioship with specialised doctors. Cotributio ad Achievemets The DHCF assists up to 20 patiets weekly ad iformatio o viral hepatitis C is widely made available. Persoal ad direct iteractio has tured out to be a successful practice, for istace specialised talks are give at schools with a high proportio of drug users. Oe of their mai achievemets is for istace the iclusio of a viral hepatitis C (HCV) test i a cetre for youg offeders i additio to the HIV testig. Their book ( Das DHC Hadbuch ) has also bee a mai cotributor to their icome ad to the dissemiatio of iformatio. OPPORTUNITIES AND CHALLENGES AHEAD The mai challege to overcome i the future is the adoptio of a atioal strategy agaist viral hepatitis i Germay. This icludes the implemetatio of a systematic screeig programme. I additio, similar to the govermet s HIV commitmets, the various patiet orgaisatios advocate fuds beig made available for awareess raisig ad primary as well as secodary prevetio. At the Europea level recommedatios to be followed by Member States should be draw up for primary ad secodary prevetio. Italy THE SITUATION IN ITALY Estimated prevalece I Italy the prevalece of viral hepatitis is about 1% for viral hepatitis B ad 2.7% for viral hepatitis C. Accordig to the official umbers, suffer from cirrhosis origiatig from viral hepatitis C ad origiatig from viral hepatitis B. Treds The govermet has some positive ew workig measures with private parterships, but still oly vacciatio for viral hepatitis B is metioed i the healthcare programmes ad there is o active idetificatio process for occult Hepatitis, which could be ackowledged as a best practice. The prevalece tred seems to be decliig, but aroud patiets die from liver disease each year. There is o data o ew ifectios per year icludig o the ifectios brought by migratio flows. Specifically for viral hepatitis C, there is geeral uawareess about the real scale of ew ifectios every year, as the otificatio system is i place oly for acute viral hepatitis. Treatmet Treatmet for both viral hepatitis B ad C is widely available i Italy ad waitig time is geerally ot a issue. However, this is partly due to the fact that proactive case fidig is ot a political priority i the healthcare sector. Testig Testig ad primary prevetio is geerally poor, particularly for viral hepatitis C. A patiet ca oly fid if he/she has cotracted viral hepatitis if he/she udergoes testig for other reasos e.g. prior to ivasive surgery. Political willigess ad drive to fid ad treat ill patiets is still lackig. 42

43 PATIENT GROUPS IN ITALY EPAC olus Backgroud iformatio The EPAC olus associatio was formed i 1999 with the aim to provide adequate couselig ad iformatio o viral hepatitis to those i eed. Curretly, it is located i Rome ad Mila ad has a couselig capacity of over 180 patiets per week, either by phoe, or i perso. Its work is highly recogized both i the public eye ad with policy-makers ad the orgaizatio idetifies itself as the oly trustworthy place that most patiets ca go to. Mai activities EPAC s awareess raisig campaigs are frequet ad varied, reachig out to all members of society through umerous istrumets, i.e. the iteret, leaflets, ewspapers ad others. The associatio orgaises umerous campaigs throughout the years reachig out ad maily directed at the geeral public ad policy-makers. Its methods are varied ad umerous istrumets are used i order to get the messages across i the most professioal ad effective maer. Cotributio ad Achievemets EPAC olus frequetly meets with policy-makers to reiforce its views ad request support. However, there is ot eough fudig available; hece, the impact is ot always as required. Oe of its achievemets is the recet agreemet that was reached with the Miistry of Health to carry out a prevetio study based o a survey. The study s results will be released i However, geerally EPAC olus struggles to iclude viral hepatitis treatmet i its etirety (from primary to secodary prevetio) ito the atioal health pla ad to make sure that all of the coutry s regios are able to provide the same ad highest stadard level of treatmet to patiets. OPPORTUNITIES AND CHALLENGES AHEAD The most importat curret challege is to iclude all hepatitis treatmets ito the atioal health pla ad esure that patiets ifected through blood trasfusios are compesated ad fully reimbursed. I additio, the iclusio of viral hepatitis screeig ad prevetio ito the atioal healthcare system remais a key challege. A importat step ad opportuity towards achievig these goals is to promote greater coordiatio betwee stakeholders i Italy icludig istitutios, the pharmaceutical idustry, patiet associatios ad scietific associatios. At EU level uified screeig guidelies should be draw-up ad resources should be made available for research ad trials of ew drugs o high risk groups. Polad THE SITUATION IN POLAND Estimated prevalece Viral hepatitis B ad C prevalece i Polad is betwee 1.5% ad 2%. There are a estimated people ifected, of which may are uaware of their coditio. Treds I theory, prevalece should decrease as the saitary coditios i the hospitals ad medical cetres improve. Doctors expect however that i view of the lack of regular screeig, prevalece will icrease patiets who are already ifected but who are ot aware will start to have symptoms (which might occur eve years after their iitial ifectio). The specialists claim that all people who have udergoe a medical procedure before 1991 should be tested for HBV/HCV. 43

44 Report o Hepatitis Patiet Self-Help i Europe Treatmet Viral hepatitis B ad C are ot high o the political ageda, the fiacial resources for the screeig tests but also for the therapy are therefore limited. This is coupled with the lack of awareess amog geeral practitioers about the symptoms at the early stage of the disease. Polad does ot iclude primary or secodary prevetio i its atioal health pla. Some of the treatmet that is provided for viral Hepatitis B is too old ad ot up to curret stadards. I additio it may take up to 3-5 years for patiets to start treatmet o Iterfero. Testig Viral hepatitis tests are curretly ot icluded i the basic check-ups e.g. obligatory test for pre-employmet. Although the ifrastructure is broadly i place, there are ot eough fiacial resources to fiace tests or treatmets. The patiet eeds to go to a specialist to be prescribed a free-of-charge test; otherwise the patiet eeds to bear the costs privately. PATIENT GROUP IN POLAND The Star of Hope Backgroud iformatio The Star of Hope orgaisatio was created i 2007 i Katowice, Polad. Its mai goal is to help patiets with liver diseases regardless of the cause, provide them with cousellig ad, i a way, substitutig official bodies i the task of idetifyig ifected people. The Star of Hope cooperates with other orgasiatios icludig the Hepa-Help Associatio, Agaist the Yellow River Curret Foudatio ad the SOS-WZW Associatio. Mai activities Awareess raisig is oe of the mai activities of the Star of Hope. I additio to the 20 voluteers icludig doctors, which assist i the promotio of the campaigs, the associatio parters with other specialised orgaisatios ad idividual geeral practitioers i order to get the message across ad receive feedback. Most of the campaigs are locally focused ad cosist of expert meetigs, meetigs with politicias, media outreach, iformatio stads i public places ad free testig iitiatives. The istrumets used for the messagig vary from leaflets to ewspapers, specialised jourals ad the most importat argumets are foud i scietific studies. Cotributio ad Achievemets The most successful campaig that was carried out cosisted of a screeig campaig i the Silesia regio people were tested for viral hepatitis C which revealed a idetificatio level of 1.5%. The campaig was widely picked up by media (atioal, regioal icludig press, radio ad TV programmes); i additio aroud 50 TV iformatio spots appeared. Patiets are still turig to the associatio after this campaig ad the media wats to cotiue reportig about the viral hepatitis dager. The Associatio is i cotact with the decisio makers at miisterial level oce a year, usually i case of a cocrete problem (e.g. the suspesio of the fiacig for ocology patiets due to the lack of adequate regulatios). It maitais more regular cotacts with the local politicias. However, there is a geeral feelig that viral hepatitis is ot o the priority list for the decisio maker ad the problem is widely uderestimated. OPPORTUNITIES AND CHALLENGES AHEAD At the strategic level the mai challege i Polad is to covice the govermet ad healthcare professioals of the seriousess of the disease ad to icrease the political will. The Star of Hope believes that it would be importat to reach out to more regios i the coutry ad to try to ifluece policy-makers at a broader level. Esurig that the problem is high o the political ageda ad that adequate fiacig is secured remais a importat goal. I additio, the iclusio of primary ad secodary prevetio i the atioal health pla ad the itroductio of viral hepatitis tests ito basic check-ups e.g. the obligatory test for pre-employmet, is importat. Awareess-raisig campaigs targeted at society at large as well as geeral practitioers will eed to be further coducted ad promoted. 44

45 Portugal THE SITUATION IN PORTUGAL Estimated prevalece I Portugal the estimated prevalece of viral hepatitis C is 1.5% while about 1% suffers from viral hepatitis B. However, give the lack of official data, umbers are believed to be slightly higher tha these figures, i additio to the ew cases that also go uregistered. Treds Give that viral hepatitis B vacciatio is obligatory for all ewbors, the disease is ot cosidered a major problem by the govermet, although the majority of the populatio is ot vacciated. The mai cocers i Portugal are risk-groups ad immigrats who live outside of the legal system ad therefore do ot receive access to the atioal health system. Treatmet Testig i Portugal is possible but ot easily accessible. Usually, after beig diagosed, patiets will eed to face log queues ad sigificat waitig time if they require ay further testig while direct access to treatmet is slightly quicker. Aother issue faced by patiets is discrimiatio by healthcare professioals (as they are associated with drug addicts, prostitutes, alcoholics) ad, sometimes, egliget behaviour. Treatmet is, oetheless, free of charge. Testig A viral hepatitis check is oly carried out upo request of the patiet or if the patiet is cosidered to be part of a risk group. I SOS Hepatitis view, the largest groups at risk are ex-combatats from the overseas war (Agola, Mozambique, Guiea...), wome who became mothers, wome who have abortios, ay perso who was operated before the year 1992, or has received a blood trasfusios before Today these people are 50/60 years old, may have bee ifected for may years ad most are pre-cirrhotic without kowig it. PATIENT GROUPS IN PORTUGAL SOS Hepatitis Support Group Backgroud iformatio The SOS Hepatitis Support Group was fouded i 2005 ad is ow represeted i 7 differet cities ad is etirely ru by voluteers. Its objective is to provide couselig ad clarificatio to patiets of practically all liver coditios, as well as the promotio of awareess to the geeral public ad health professioals as well as providig iput to official studies. The associatio suffers from a great lack of fudig (mostly private/public doatios) ad public support justified by the low status of viral hepatitis i Portugal ad its taboo-like image. Mai activities Awareess-raisig campaigs are ot the mai activity of SOS Hepatitis due to lack of fudig ad time. Essetially, the focus is o expert ad face to face meetigs as well as semiars. With these actios the voluteers aim to gather policy-makers ad healthcare professioals support, i additio to the geeral public s attetio. However, the best receptio of the iformatio experieced to date has actually come from school childre who are far more ope to the topic (childre actively participate i ope sessios ad explai these experieces to their parets). Cotributio ad Achievemets SOS Hepatitis has a cosiderable umber of celebrity public supporters ragig from footballers to rock musicias ad Members of the Europea Parliamet (MEPs) icludig for istace the former MEP, Fausto Correia, S&D. Furthermore, o the World Hepatitis Day ad o other sigificat occasios they take the opportuity to orgaise public actios, such as distributig codoms to help prevetio. Their greatest achievemet was the orgaisatio of a awareess raisig semiar at the Uiversity Hospital of Coimbra, which had the participatio of over 150 healthcare professioals ad studets. 45

46 Report o Hepatitis Patiet Self-Help i Europe OPPORTUNITIES AND CHALLENGES AHEAD The mai challege for SOS Hepatitis is to improve public opiio ad demystify the taboo aroud viral hepatitis. I Portugal, the mai obstacle to policy developmet is the perceptio of the illess ad the lack of kowledge which surrouds it. A chage i perceptio would assist both the atioal healthcare system to work better ad the associatio to receive more fudig. Romaia THE SITUATION IN ROMANIA Estimated prevalece I Romaia the prevalece of viral hepatitis B ad C together is aroud 10% represetig over 2 millio people with a tedecy to rise. Treds I spite of the icreasig tedecy of viral hepatitis prevalece, treatmet ad vacciatio for viral hepatitis ad eve liver cirrhosis are ot icluded i the atioal healthcare systems. Treatmet Viral hepatitis is curretly ot icluded i the atioal health programmes or i its vacciatio or medical reimbursemet system, hece the high cost especially for patiets that are uder iterfero therapy. Viral hepatitis is cosidered a chroic disease but is ot part of atioal programmes which would provide for larger subsidies, as well as easier access to treatmet. (Cirrhosis might be icluded i a atioal programme i the future.) Waitig time for treatmet ca amout to 1 year. I additio, treatmet is ofte liked to age istead of to the extet to which the liver is affected. Testig Viral hepatitis tests are ot icluded i geeral set of tests. PATIENT GROUPS IN ROMANIA SANOHEP Romaia Backgroud iformatio SANOHEP Romaia was fouded i 2001 with the overall goal to educate people o viral hepatitis ad promote iformed behaviour. Their added value is the facilitatio to patiets of psychological couselig ad the possibility of free testig but also their soft approach to both awareess campaigs ad policy-makig. Their curret specific goal is to idetify ad scree target groups uder risk ad to iclude viral hepatitis i geeral check-up tests. Mai activities The orgaisatio promotes umerous awareess raisig campaigs which are directed maily at policy-makers ad risk groups, although accessible to the whole populatio. SANOHEP coducts the campaigs essetially through semiars, roudtables, expert meetigs or free test iitiatives, depedig o the specific objective. Moreover, they also orgaise media outreach campaigs i order to promote public support for tacklig the disease. The mai meas used to pass o the message are the iteret, leaflets ad televisio i what cocers geeral awareess campaigs. Whereas, the best mechaisms foud for a more i-depth approach are face to face meetigs with specialists ad political declaratios with some kid of effective cosequece. 46

47 Cotributio ad Achievemets The most recet campaig targeted school childre ad teeagers from 9 pilot couties i Romaia. It was the first such iitiative targetig childre. The objective was to provide them with iformatio o viral hepatitis A (especially for primary school childre, who were asked to show the leaflets we distributed to their parets), viral hepatitis B ad C (for 5-8 ad 9-12 of age). They were ivited to iformal debates coducted by the voluteers. Very good feedback was received especially from teachers ad the media coverage was also very good. SANOHEP has built a log-stadig partership with the Miistry of Health ad obtaied observer status i some of the local ad atioal committees resposible for the decisios o treatmet availability ad policy developmet. They also parter with idividual geeral practitioers ad other horizotal patiets associatios demostratig that there is a etwork i place, i Romaia, to deal with the challeges of viral hepatitis ad work o public awareess. OPPORTUNITIES AND CHALLENGES AHEAD SANOHEP s mai challege is to try ad iclude viral hepatitis i the geeral set of tests provided by the Govermet ad help idetifyig target groups uder risk. I additio, free treatmet ad the iclusio of primary ad secodary prevetio ito the atioal healthcare system are beig pursued. Awareess raisig ad icreasig the kowledge of prevetio mechaism close to the risk groups remai top priorities for SANOHEP. Aother challege to overcome is that a patiet s age should o loger be a criterio for the iitiatio of treatmet. Slovakia THE SITUATION IN SLOVAKIA Estimated prevalece There is a estimated prevalece of viral hepatitis B as well as C is of 1% but the lack of official data makes it rather difficult to assess the real situatio. Treds As there is o official data o viral hepatitis prevalece it is equally hard to determie whether or ot the umber of ifected people is risig or decreasig. I ay case, reports from the Europea Moitorig Cetre for Drugs ad Drug Addictio (EMCDDA) state that amogst drug users the situatio is stable, although high, ad govermet measures are relatively effective. Treatmet Whilst primary prevetio programmes are iadequate, reimbursemet, waitig time, ad the availability of treatmet seem to be adequate both at the political ad the operatioal levels. Testig Testig has bee available free of charge sice 2009 i most of the geeral practitioers practices. All patiets may request it but it is ot yet part of the geeral blood test. PATIENT GROUPS IN SLOVAKIA HEP HELP KLUB Backgroud iformatio HEP HELP KLUB was formed i 2006 with the objective of icreasig expert kowledge i the area of medicie ad public health with a emphasis o viral hepatitis C ad other diseases of the liver. The associatio is supported by 5 voluteers who esure parterships with idividual ad collective associatios of medical doctors as well as to esure the couselig of aroud 5 patiets per week. 47

48 Report o Hepatitis Patiet Self-Help i Europe Mai activities The HEP HELP KLUB frequetly orgaises all types of awareess raisig evets from expert meetigs to semiars ad free testig iitiatives. As a small orgaisatio it does very well i terms of diversifyig messagig istrumets ad frequetly uses the iteret, , TV, ewspapers ad others to trasmit its message. Cotributio ad Achievemets HEP HELP KLUB s greatest achievemet to date is the sigificat shift i public opiio ad perceptio of viral hepatitis B ad C. This was achieved through the umerous awareess raisig campaigs that were orgaised ad a effort to cotact policymakers by meas of writte commuicatio. Through their activities more iformatio could be dissemiated to the geeral public, achievig greater awareess of the disease. OPPORTUNITIES AND CHALLENGES AHEAD Viral hepatitis is ot a particularly eglected disease i Slovakia, however there is still a lack of geeral public awareess. Hece, the associatio s mai opportuity is to icrease kowledge of the disease i the area of public health. Furthermore, the associatio is aimig to iclude viral hepatitis i routie blood screeigs ad try to better educate the Slovak healthcare staff. Spai THE SITUATION IN SPAIN Estimated prevalece I Spai, 3% of the populatio suffers from viral hepatitis C ad aother 3% is believed to be ifected without kowig it. Less data is available o the prevalece of viral hepatitis B ifectios but it is estimated that about 1.5-2% of the populatio suffers from viral hepatitis B. Treds Give that viral hepatitis B vacciatio is available free of charge ad is eve obligatory for all ewbors, the disease is ot cosidered a major problem by the govermet. However, takig ito accout the higher prevalece amog migrats, the patiet groups i Spai ascertai that viral hepatitis B remais a major risk to public health. I additio, viral hepatitis is highly stigmatized i Spai ad the psychological aspect is ofte eglected. Hepatology teams of mai hospitals i collaboratio with patiet groups are startig to offer traiig ad awareess activities to geeral practitioers ad urses so that patiets ca be diagosed at a earlier stage. Treatmet Oce diagosed, the viral hepatitis patiet has access to the appropriate treatmet ad to hepatologists. The mai problem however remais early diagosis as o systematic public screeig is carried out ad there is geerally a lack of kowledge of the disease. I additio, Geeral Practitioers, who are a patiet s first poit of cotact, are ofte ot adequately educated i this field to diagose the disease i a timely maer. Testig A viral hepatitis check is oly carried out upo request of the patiet, it is thus ot icluded i a ormal blood test for istace. I particular, people with tattoos or people who received blood trasfusios before the 1990s as well as the immigrat populatio (e.g. from Chia, Romaia ad South America) are major risk groups. 48

49 PATIENT GROUPS IN SPAIN AsoEEHC Asociació Española de Efermos de Hepatitis C Backgroud iformatio AsoEEEHC is the Spaish patiet associatio operatig at the atioal level sice Its missio is to lead o defedig the collective ad idividual iterests of viral hepatitis C patiets. AsoEEHC works with professioals, psychologists, lawyers ad social workers. Mai Activities I the cotext of its awareess raisig campaig, AsoEEHC is ivolved i a wide rage of activities icludig semiars, roudtables, meetigs with politicias, ad traiigs of geeral practitioers, media outreach ad iformatio stads. I additio, give the stigmatisatio of viral hepatitis strog focus is placed o the psychological dimesio of the disease. Cotributio ad Achievemets Over the years AsoEEHC has established log term relatioships with policy makers as well as with the media. With the Miistry for Health AsoEEHC has for istace orgaised work tables to address the topic of viral hepatitis ad to preset cocrete cases. Policy makers at atioal level have bee receptive to AsoEEHC activities, ad have supported the orgaisatio i elaboratig practical guides o viral hepatitis C for geeral practitioers, by participatig i days dedicated to patiets ad their families as well as speakig o co-ifectio i peitetiaries. AsoEEHC collaborates well with policy makers, however owiitiatives by the govermet are rare. I April 2010, AsoEEHC submitted a request for viral hepatitis C screeig i risk groups to the health departmet, which is curretly uder review. Their mai success to date is the positive impact of the World Hepatitis day, the right to a secod opiio by the patiet ad their active participatio i studies. I November 2010, AsoEEHC will be carryig out a study o the realisatio of screeig amog the risk group populatio i collaboratio with the Health Departmet of the Regio of Valecia ad with the support of the cousellor for public health. The study will be preseted by the regioal miistry of Valecia to geeral practitioers as well as to patiets, their families ad the geeral public. ASSCAT Associació Catalaa de Malalts d Hepatitis Backgroud iformatio ASSCAT was fouded i the year 2000 ad is the Associatio for Hepatitis Patiets i the autoomous regio of Cataloia. Its missio is to help the patiets ad their families from the momet of diagosis by iformig o all aspects of viral hepatitis. Their added value to other establishmet such as the Primary Care Cetres (the patiet s first poit of cotact) is their patiet to patiet approach. Their experiece as patiets cotributes to providig practical ad emotioal support. Mai activities ASSCAT s awareess raisig campaig is maily directed at healthcare professioals, the geeral public ad risk groups such as drug addicts. To this ed, expert meetigs ad iformatio days are orgaised for health persoel, the geeral public, academics ad the immigrat populatio. Cotributio ad Achievemets The results of these efforts are however limited to some extet due to a lack of resources ad a lack of support by the Cataloia govermet, which does ot cosider viral hepatitis as a priority issue. Over the years ASSCAT maaged to build strog liks with hepatologists who support their campaig with their professioal expertise e.g. traiig semiars for Geeral Practitioers. Media coverage is highly depedet o the ature of the ews ad whether there is a major developmet. Despite these costraits, ASSCAT oetheless secured two meetigs with the Health Departmet ad esured that they committed to distributig iformatio leaflets o viral hepatitis to all Primary Care Cetres i

50 Report o Hepatitis Patiet Self-Help i Europe OPPORTUNITIES AND CHALLENGES AHEAD Whilst fudig commitmets for viral hepatitis treatmet are available ad adequate i Spai, o resources are devoted to the early detectio of the disease, e.g. there is o screeig programme i place. Viral hepatitis is ot icluded i the govermet health programme or is there a specific prevetio campaig. The challeges for these orgaisatios iclude achievig greater visibility ad sufficiet iformatio o viral hepatitis. This icludes extesive iformatio campaigs by the public admiistratios ad adequate traiig of geeral practitioers. A public screeig pla for viral hepatitis C risk groups represets a major challege ad is actively pursued. I support of these efforts, access ad productio of more data i Spai but also across Europe would sigificatly cotribute to achievig these goals. Swede THE SITUATION IN SWEDEN Estimated prevalece I Swede there is a estimated prevalece of viral hepatitis C of aroud 0.5% ad most cases (90%) are idetified i drug users. Treds Overall, the tred is for the virus to decrease i terms of the geeral populatio but ot ecessarily amogst the most affected risk groups due to the lack of govermet support to prevetio. Treatmet Treatmet is available i hospitals ad follows the ormal healthcare provisios of the Swedish State. This meas that if the patiet is idetified as a risk group, treatmet will be free ad if this is ot the case the ormal health isurace schemes applies. Testig Vacciatio of ew bor childre is ot a mai priority i Swede. It is ot icluded i the atioal health system scheme ad is oe of the biggest issues for the patiet groups. Testig is oly possible o request ad through the paymet of a fee. PATIENT GROUPS IN SWEDEN Riksföreige Hepatit C (RHC) Backgroud iformatio The Natioal Uio of Hepatitis C (RHC) is a small patiet associatio which works maily o raisig awareess, miimizig the spread of the disease ad supportig a small umber of patiets (aroud 5 per week) sufferig from viral hepatitis C ifectio. Its depedece o 5 voluteers does ot allow them to orgaize may campaigs or public actios beyod the World Hepatitis Day. Awareess raisig campaig As a small associatio the RHC does ot have the ability to coordiate may awareess raisig campaigs so its members prefer to put together face to face meetigs betwee patiets ad specialists or egage i the dissemiatio of relevat studies ad data through the use of the iteret ad . Cotributio ad Achievemets The World Hepatitis Day is the yearly campaig where the associatio gathers most of its fudig ad it is usually the biggest public activity they orgaise. I terms of achievemet, the associatio is happy with the degree of iformatio dissemiated through leaflets ad flyers i markets ad other public locatios. Its most importat cotributio is the support they provide to those ifected ad to their families (as they are the oly associatio) but also the dialogue it tries to establish with health care ad decisio-makers. 50

51 OPPORTUNITIES AND CHALLENGES AHEAD As the orgaisatio maily focuses o viral hepatitis C, the work of the associatio cocetrates o risk groups. Hece, the mai challege of RHC is to raise awareess ad ifluece public policy to create better coditios for those withi the risk groups sufferig from viral hepatitis. The mai challege is to educate healthcare professioals to esure the ecessary awareess of viral hepatitis ad promote the importace of primary prevetio. I fact, the support of healthcare professioals is a sigificat factor i their awareess raisig campaig ad i order to receive policy-makers attetio. Dialogue with policy-makers is aother challegig task for RHC as there is very little political will to support the viral hepatitis C cause i Swede. The Netherlads THE SITUATION IN THE NETHERLANDS Estimated prevalece I the Netherlads the prevalece for both chroic viral hepatitis B ad C is about 0.1% to 0.3%. The prevalece of viral hepatitis B is higher amog certai risk groups icludig immigrats from edemic areas ad (former) drug users. I the Netherlads there is less data o the prevalece of viral hepatitis C; the risk groups are amog others (former) drug users ad people who had a blood trasfusio or received other blood products (haemophiliacs) before Treds Although o atioal screeig strategy is i place, screeig of targeted groups receives more attetio. Sice 1998 pregat wome are for istace tested for viral hepatitis B. I additio, sice 2003 ewbors are vacciated if oe of the parets comes from a medium or high edemic area. Prostitutes ad homosexual me with multiple sexual parters ca also be vacciated for free. Treatmet Oce diagosed, treatmet is available ad the costs are covered by the basic health isurace package. Testig Viral hepatitis tests are ot icluded i ay geeral check-up. PATIENT GROUPS IN THE NETHERLANDS Natioaal Hepatitis Cetrum (NHC) Backgroud iformatio The Natioaal Hepatitis Cetrum (NHC) i the Netherlads was fouded i 1995 to take up a cetral place i ad to cotribute to the social ad societal aspects of viral hepatitis. As a idepedet orgaisatio NHC works together with doctors ad other patiet orgaizatios to raise awareess ad to be a geeral helpdesk for people dealig with viral Hepatitis ad other liver diseases, both from a professioal or private agle. The NHC advises betwee 10 ad 20 patiets per week, but also health care workers, physicias ad other professioals are advised o viral hepatitis. Mai activities The NHC orgaises very broad campaigs to raise awareess o liver diseases ad viral hepatitis. The campaigs are directed towards a umber of target groups icludig policy makers, isurace compaies, healthcare professioals, risk groups, ad the geeral public. A variety of commuicatio chaels combied with a broad rage of activities like semiars, media outreach, iformatio stads ad free testig is beig used. This is supported by specialised studies, scietific data, crosscoutry compariso ad meetigs with specialists. 51

52 Report o Hepatitis Patiet Self-Help i Europe To reach as may people as possible, the NHC is workig together with a variety of stakeholders such as the Associatios of Geeral Practitioers (e.g. Nederlads Huisartse Geootschap), horizotal patiet associatios (e.g. Natioaal Istituut voor Gezodheidsbevorderig e Ziekteprevetie) ad specialised orgaizatios (e.g. Nederladse Leverpatiete Vereigig). Cotributio ad Achievemets Their greatest achievemet of the NHC is the sigificat media attetio they obtaied o the occasio of the World Hepatitis Day. More tha 150 websites published their press release ad there were also iterviews i the radio ad televisio. 'Uiversal vacciatio will be implemeted i the Dutch Childres' vacciatio programme i 2011, a achievemet of may professioals ad orgaisatios workig i the field of viral hepatitis, icludig the NHC.'Geerally the NHC faces the obstacle that there is a lack of iterest amog policy makers ad healthcare professioals. OPPORTUNITIES AND CHALLENGES AHEAD 'The NHC is vigorously pursuig screeig for viral hepatitis i several risk groups. I additio, the developmet of a hepatitis moitorig system is eeded. The NHC will cotiue to raise awareess of the seriousess of viral hepatitis amog the geeral public, healthcare professioals ad politicias. Furthermore, icreased media coverage of viral hepatitis is beig further pursued. Uited Kigdom THE SITUATION IN THE UNITED KINGDOM Estimated prevalece The prevalece of viral hepatitis C i the Uited Kigdom (UK) is 0.5% to 1%. Govermet figures for viral hepatitis B suggest the prevalece is 0.3% (about ) but idepedet estimates put it at twice that figure. Treds Prevalece is believed to be o the rise. There is still o uiversal vacciatio for viral hepatitis B i place ad there is o systematic screeig strategy i the UK. Data is relatively poor as there is o prevalece study beig carried out, except amogst ijectig drug users.i additio, Natioal Health Service provisio varies throughout the UK which complicates the access to treatmet ad patiets rights i geeral. Treatmet Access to treatmet ad reimbursemet is geerally ot a issue. However o occasios retreatmet ca be problematic ad i some areas specialists are ot spread evely. Hepatitis care for drug users ad prisoers is also rather poor. Waitig times have geerally become much better. They are more of a problem i those areas where diagosis through the implemetatio of testig programmes has improved. Vacciatio for viral hepatitis B raks from beig free for certai risk groups listed i the so called gree book to 200 i some places. Testig Primary prevetio ad case fidigs are geerally poor. Especially amog drug users, ot eve testig targets are met. 52

53 PATIENT GROUPS IN THE UNITED KINGDOM The Hepatitis C Trust Backgroud iformatio The Hepatitis C Trust was fouded i 2001 ad has offices i Lodo, Covetry ad Ediburgh. They work with 16 full time employees ad 60 voluteers across the coutry. Patiets are geerally iformed about The Hepatitis C Trust s existece at the time of hospital referral. Their missio is to provide iformatio ad support people with viral hepatitis C, as well as raisig awareess ad prevetig uecessary deaths. Mai activities Apart from cousellig, The Hepatitis C Trust leads awareess campaigs directed at risk groups, healthcare professioals, policymakers ad the geeral public. For these campaigs it makes icreasigly use of ew media such as facebook ad twitter, but also produces patiet testimoials for radio statios which are broadcasted every 3 moths. The Trust has established parterships with both specialist (e.g. the British Associatio for the Study of the Liver) ad geeral practitioer associatios (e.g. Royal College of Geeral Practitioers). With the latter, they are developig a olie learig tool o viral hepatitis C for geeral practitioers. Furthermore, the Trust rus the secretariat for the all-party hepatology group i Parliamet ad works closely, at regulatory level, with the Natioal Istitute of Cliical Excellece (NICE), whom it has recetly advised o access to ativirals for drug users. Fially, the differet health systems i Eglad, Scotlad ad Wales have proved to be helpful. The Scottish hepatitis C strategy, triggered by the Royal College of Physicias cosesus coferece i 2004, led the way for greater efforts i Eglad ad Wales. Cotributio ad Achievemets At policy level, the Trust coducted a award-wiig campaig for a atioal liver strategy which was the kicked off by the Departmet of Health i October Its chief executive Charles Gore is ow co-chair of oe of the workstreams ad sits o the liver strategy s steerig group. Furthermore, thaks to the help of VIP patiet Dame Aita Roddick, the Hepatitis C trust maaged to raise the profile of Hepatitis C sigificatly i the UK media ad has maaged to maitai this level, despite Dame Aita s tragic death i October British Liver Trust Backgroud iformatio The British Liver Trust was fouded i 1988 ad is the oly liver charity for adults i the coutry. Their missio is to help adults with liver disease ad to prevet liver disease. Its objectives iclude advacig educatio ad awareess amog the public, patiets ad health professioals, edorsig health educatio ad promotig medical as well as scietific research relatig to diseases ad disorders of the liver. Mai activities The campaigs of the British Liver Trust are far reachig ad iclude iteractio with policy-makers ad healthcare professioals, the geeral public ad risk groups. A umber of semiars, expert meetigs ad iformatio stads are orgaised regularly. I additio, media outreach is a importat tool used as alog with the iteret, leaflets, ewspapers ad other sources of iformatio such as scietific studies ad cross-coutry comparisos. Geerally there is a good receptio of the campaigs cocerig liver disease, but both the media ad the public opiio are ot too favourable to self iflicted case studies i.e. former drug users. A regular relatioship has bee built with about 10 people from the Departmet of Health. 53

54 Report o Hepatitis Patiet Self-Help i Europe Cotributio ad Achievemets Amogst its mai achievemets is the recet pharmacy testig evet i Blackpool (a area with the highest rates of mortality due to chroic liver disease i Eglad) ad idetified 64% of those tested as havig HCV. The British Liver Trust s greatest problem is however the cosiderate lack of attetio from policy makers, healthcare professioals ad the media. The FaCe campaig for Hepatitis C i the UK is led by the Health Departmet, however it is o hold sice the electios i the UK. Noetheless, they have recetly achieved a commitmet from the Govermet for a Natioal Liver Strategy ad the Govermet has appoited a Liver Tsar (Dr. Marti Lombard) to formulate it. I this process statistics ad scietific evidece that liver is the oly disease amog the big killers that is o the rise have prove key. The strategy will ecompass efficiecy ideas ad will have a cliical focus rather tha o spedig or promotig public awareess. Opportuities ad challeges ahead The British Liver Trust s mai goal is the implemetatio of the atioal liver strategy. The lack of educatio o viral hepatitis C amogst healthcare professioals is the biggest challege i the Hepatitis C Trust s edeavour to improve case fidig. While there are examples of good practice at local level, it is rather challegig to make them kow more widely, so they ca be emulated. The cooperatio with the Royal College of Geeral Practitioers ad the special iterest group of geeral practitioers for drug addictio are opportuities i this cotext. Aother challege is the lack of both scietific ad health ecoomic data, as well as the ature of the disease itself, which people fid hard to relate to. The British Liver Trust s also aims at esurig that the implemetatio of uiversal vacciatio for viral hepatitis B, which icludes the eed for better prevalece figures. I the cotext of the Natioal Liver Strategy, they wat to esure that the ewly appoited liver tsar becomes a efficiet post ad starts to chage the curret situatio at a atioal level. The overarchig challeges remai to be the idetificatio of all those sufferig from liver disease ad create joied up programmes aimed at risk groups to esure appropriate care. Better case fidig iitiatives with a commitmet to treatig people upo ideficatio are beig pursued as well as icreasig the kowledge i the healthcare commuity of liver diseases. 54

55 Aex II: Patiet self-help survey Sectio 1: About the orgaizatio 1. Name of the patiet self-help group/orgaizatio? 2. What coutry are you based i? 3. Whe was your group/orgaizatio fouded? 4. What is your missio? 5. What are your mai activities? a. Couselig b. Awareess raisig campaig c. Participatio i studies d. Other: 6. How may patiets do you advise per week? a. Up to 5 b. Betwee 5 ad 10 c. Betwee 10 ad 20 d. More tha 20 (please specify) 7. Why do they come to you? Do they have other places to go to? a. We are the oly place they ca go to b. We are complemetig other places If you aswered optio b) Please give details about where else patiets go to ad what your added value is: 55

56 Report o Hepatitis Patiet Self-Help i Europe 8. Please rak i order of importace the liver diseases you are dealig with: Viral Hepatitis A Viral Hepatitis B Viral Hepatitis C Hepatitis due to alcohol cosumptio No-alcoholic fatty liver disease Liver cirrhosis Liver Cacer Haemochromatosis Other 9. Do you work with voluteers ad/or employees? a. Yes Please idicate the umber: Employees: Voluteers: b. No 10. How do you fiace yourself? Please provide estimated percetages. a. Private % b. Doatios/geeral public % c. Pharmaceutical idustry % d. Idustry other tha pharmaceutical compaies % e. Public sector/govermet fudig % f. Other: % Sectio 2: Liver awareess raisig campaig 11. Do you orgaize campaigs to raise awareess of liver diseases ad/or hepatitis? a. Yes b. No If yes, please proceed to questio 12. If ot, please explai the reasos e.g. o eed, ot the focus, o resources: 12. At whom is your awareess raisig campaig directed? a. Policy makers b. Isurace compaies c. Healthcare professioals d. Geeral public e. Risk groups (e.g. drug addicts) f. Other: 56

57 13. Are you satisfied with the result? a. Yes b. More or less c. No Please explai: 14. Do you have a log term relatioship with policy makers or other stakeholders, e.g. VIP patiet or supporter? a. Yes b. No If yes, please specify. If o, what are the reasos? 15. What are the mai activities you carry out to promote awareess of hepatitis? a. Semiars/roudtables b. Expert meetigs c. Meetigs with politicias d. Media outreach e. Iformatio stads i public places f. Free testig g. Other: 16. What chaels do you use to raise awareess of hepatitis? a. Iteret b. /letters c. Leaflets d. Newspapers e. Specialised jourals f. Life Style magazies g. Televisio h. Other: 17. What mai tools ad argumets do you use to raise awareess of hepatitis? a. Specialised studies b. Scietific data (e.g. graphs, tables) c. Cross-coutry comparisos d. Face to face meetigs icludig specialists e. Political statemets e.g. Europea Parliamet Writte declaratio f. Other: 57

58 Report o Hepatitis Patiet Self-Help i Europe 18. Do you parter with ay other stakeholders? (please specify) a. Specialised orgaizatios b. Idividual Geeral Practitioers c. Associatios of Geeral Practitioers d. Horizotal patiet associatios e. VIP patiet or supporter? f. Other: Sectio 3: Evaluatio 19. What is the estimated hepatitis prevalece i your coutry; is there a geeral risig or decliig tred? 20. Is hepatitis primary ad/or secodary prevetio icluded i the public health care programmes/policies of your coutry? a. Yes, primary ad secodary prevetio b. Oly primary prevetio c. Oly secodary prevetio d. Neither Please specify: 21. Please specify how you would rate the attetio that is give to hepatitis at political ad operatioal level? Political will/ iitiative/support Operatioal set-up Criteria (adequate/iadequate) (adequate/iadequate) a. Reimbursemet availability b. Primary prevetio c. Secodary prevetio d. Access to treatmet e. Waitig time f. Other: 22. What are your observatios about how your curret atioal health system classifies ad targets hepatitis, is it a case for best practice? 58

59 23. How ofte do you meet with policy makers? a. 1 time per year b. 2 times per year c. 4 times per year d. 8 times per year e. Other: 24. Do you pursue a specific goal? e.g. political statemet, refudig of hepatitis testig by isurace compaies, iclusio of hepatitis i a geeral check-up test, risk-group specific screeig etc. a. Yes b. No If yes, please give details: 25. What is your greatest achievemet i the field of hepatitis awareess risig to date? 26. What is your greatest challege to date? 27. What are the mai problems you ecouter i your awareess raisig campaig: a. Lack of iterest from policy makers b. Lack of scietific data c. Lack of educatio of healthcare professioals d. Lack of media attetio e. Other: 28. How does the World Hepatitis Day cotribute to your activities? 29. How does political attetio ad fudig commitmets o hepatitis fare compare to other diseases such as HIV, tuberculosis or cacer? Do other diseases have more awareess? If so why? 31. I your view, what should sustaiable policy makig i your coutry i the field of hepatitis awareess etail? How could the situatio be improved ad by whom? 31. What activities/results would you like to see at the Europea level to support your atioal activities? 59

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61 Migratio, Hepatitis B ad Hepatitis C Mauel Carballo, Rowa Cody, Edward O Reilly, Aa Paola de Felici Iteratioal Cetre for Migratio, Health ad Developmet 61

62 Migratio, Hepatitis B ad Hepatitis C Preface Viral hepatitis costitutes a global problem that has bee eglected by atioal ad iteratioal health policy makers alike. Today, despite the fact that it has become oe of the most importat burdes of disease, few coutries have see fit to take it up i the way it deserves from either a prevetative or a treatmet poit of view. Viral hepatitis is evertheless ot uiformly distributed throughout the world ad some regios ad people are far more affected tha others. I a world i which huma mobility is becomig easier ad i which more people are already movig faster ad further tha ever before i history, the role played by migratio i the spread of viral hepatitis merits special cosideratio ad calls for policy ad practice iitiatives desiged to respod to the emergig eeds of coutries ad people. This brief overview of the scope ad magitude of cotemporary migratio ad its implicatios for hepatitis B ad C has bee prepared as a backgroud paper for the Hepatitis B ad C Summit Coferece i Brussels, 14 ad 15 October

63 Itroductio Hepatitis B (HBV) ad hepatitis C (HCV) have become two of the mai causes worldwide of liver disease ad Hepatocellular Carcioma (Perz, Armstrog, Farrigto, Huti, & Bell, 2006; CDC, 2010), ad as such have become major ad possibly growig threats to global health. I terms of the umber of people affected ad the burde it represets for them, their families ad the health care systems of the coutries they live i, HBV ad HCV are two of the world s most urget challeges (CDC 2010). Relative to other commuicable ad o-commuicable diseases, viral hepatitis has evertheless remaied eglected from both a policy ad a program poit of view i most coutries of the EU regio. Not a ew problem Viral hepatitis is ot by ay meas a ew disease. As early as the 8th cetury Hippocrates had already proposed that it might be trasmissible from perso to perso. By the latter part of the 19th cetury, a series of periodic outbreaks of jaudice had further coviced health scietists that it was viral ad could spread through cotamiated blood ad ski piercig istrumets, amog other methods. By 1947, characterizatio of hepatitis ito its A ad B forms, the defiitio of hepatitis B surface atige s (HBsAg) some twety years later, had provided a solid basis to uderstadig the ature of hepatitis ad its differet trasmissio routes. Distributio of the problem ad migratio Just as with most other major ifectious diseases, the global distributio of viral hepatitis varies sigificatly betwee coutries ad betwee regios of the world. Similarly, ot all people have a equal risk of exposure to either HBV or HCV. There is evertheless evidece that viral hepatitis is spreadig ad becomig a more global threat tha previously. Amog the may factors cotributig to the chagig epidemiology of viral hepatitis, the movemet of people withi ad betwee coutries is a potetially importat oe. Migratio i the EU Migratio ito ad betwee the coutries that make up the Europea Uio (EU) has always bee a way i which people ad coutries have coped with difficult coditios. At times of ecoomic ad political istability, people have teded to move withi ad especially out of their regio of origi i search of a safe have ad a better life. Over the last two decades, the overall directio ad pace of migratio has chaged, however, ad for the first time i recorded history the EU regio has become more of a receiver tha a exporter of people. The rage of coutries sedig people to the EU has also grow to iclude ot oly a wider spectrum of people ad socio-cultural backgrouds, but diseases as well. Migratio ad disease Migratio ad disease I today s cotext of rapid global migratio, there is a potetial for ay disease to be moved further ad faster tha was previously possible. These implicatios cocerig the movemet of HBV ad HCV merit far more attetio by coutries ad the iteratioal commuity tha they have give the problem to date. This is especially importat give that the scope ad speed of migratio is expected to grow i comig years. 63

64 A Silet ad Neglected Disease Despite the fact that viral hepatitis has become a global public health threat, both HBV ad HCV have remaied eglected relative to the attetio give to HIV ad other diseases. Some of the reasos for this may iclude: Cliical problems of diagosis ad reportig Both HBV ad HCV ca be asymptomatic ad progressio to a life threateig status ca be slow (Ratala & va de Laar, 2008). Today, as may as 40% of the idividuals ifected with HCV i Europe are thought to be uaware of their ifectio, ad i Polad (ad probably other coutries), where the prevalece of HBV is thought to be high, as may as 90% of those affected by it are estimated to be uaware of their coditio (Merkiaite et al., 2008). Difficulties i diagosig HCV i the liver (about half of those who are ifected do ot maifest elevated ALT activity) may also have limited public attetio to the problem. Lack of surveillace stadards The fact that there are still o global surveillace ad reportig system stadards cotiues to be a factor i the lack of awareess about ad attetio to viral hepatitis (Ratala & va de Laar, 2008). Differet coutries ad regios ofte use differet parameters of measuremet ad there has ot yet bee ay major attempt to develop atioal or iteratioal registries. Stigma Stigma has bee a major obstacle to the surveillace ad reportig as well as early diagosis ad treatmet of sexually trasmitted diseases i geeral, ad while it is ot clear to what extet this has bee the case with viral hepatitis, it may have cotributed to the lack of opeess surroudig it. I the case of people arrivig from differet cultural backgrouds this remais a potetially importat theme. Viral hepatitis ad migratio Although the implicatios of migratio for the spread of ifectious diseases have attracted cosiderable attetio, iterest i this area has thus far teded to focus primarily o TB, ad more recetly, HIV. There has bee relatively little iterest i viral hepatitis i the cotext of huma mobility despite the fact that it is more ifectious ad is today resposible for greater morbidity ad mortality. 64

65 Magitude of Viral Hepatitis Problem Give the ature ad pace of cotemporary migratio there is a growig capacity for viral hepatitis to be moved rapidly by people, or acquired by them, as they go from oe part of the world to aother. Estimated size of viral hepatitis problem WHO estimates that about 2 billio people are livig with viral hepatitis, ad that aroud 350 millio have a chroic form of the disease. Give the tedecy for it to be uder-diagosed ad uder-reported, however, the true figure may be much higher. About 4.5 millio people aroud the world are ewly ifected with HBV ad/or HCV every year, ad betwee 1-10% of adults ad 30-90% of ifected babies, become carriers, who are likely to develop serious liver diseases (Zaetti, Va Damme, & Shouval, 2008) that accout for aroud 620,000 deaths each year (Zaetti et al., 2008). I the case of HCV, about 85% of those ifected also become chroic carriers (Merkiaite et al., 2008) ad betwee 15-25% of them go o to develop to life-threateig liver disease i the 30 or so years followig ifectio (Mühlberger et al., 2009). Ifective ature of the virus Compared to HIV, a disease that has caught the imagiatio of both the public ad health plaers ad has ispired global itervetios, HBV ad HCV, which are essetially trasmitted i the same way, are estimated to be 100 ad 10 times more ifectious respectively (Merkiaite et al., 2008). The virus, moreover, is far more resiliet tha HIV ad remais highly potet i dried blood or other body secretios outside the body at room temperature for much loger tha HIV (Holliger, et al., 2001, Robiso, 1995, Alter, 2006). Routes of trasmissio Viral hepatitis is trasmitted i the same way everywhere, but the stregth of these modes varies cosiderably. I the coutries that have medium to high HBV edemicity, the most commo routes of trasmissio are mother-to-child at birth, percutaeous or via other cotact with ifected blood ad body fluids, or sexual itercourse (Gaem 2001, Gitli, 1997, Holliger et al., 2001, Mahoey et al., 1999). HBV trasmissio i low edemicity coutries is especially associated with ijectig drug use (IDU), sexual cotact ad practices such as body piercig usig usterile equipmet. I the case of coutries with high to itermediate HCV edemicity, ifectio is most frequetly associated with uclea ijectig practices by ijectig drug users ad to a lesser extet, by health care providers (Alter, 2006). Thus i wester Europea coutries where trasmissio of HCV through cotamiated blood has bee sigificatly reduced, the prevalece of HCV amog ijectig drug users has bee estimated to rage from 15% to 90% (Ratala & va de Laar, 2008; Mühlberger et al., 2009). 65

66 Europea Migratio Migratio as always bee a itegral part of Europea developmet ad most of what are ow EU coutries have historically beefitted from a mix of both out-ad i-migratio. I the late 19th ad early 20th ceturies whe most Europea coutries were still plagued by chroic uemploymet ad frequet coflicts, migratio became a importat safety valve ad over 70 millio people left Europe for New World coutries such as the USA, Caada, Australia, Brazil ad Argetia. Today the global migratio scee has chaged sigificatly ad migratio withi ad betwee developig coutries has become as itese as the movemet of people from developig coutries to Europe ad North America. Figure 1: Global migratio i the 21st cetury Chagig directio of Europea migratio The domiat directio of Europea migratio bega to chage with the ed of WWII ad the recostructio of idustrial coutries i orther Europea. The urget demad for maual labor i orth coutries was met by souther Europea coutries such as Italy, Spai, Portugal, ad Greece ad such was the pace of this migratio that betwee 1960 ad 1975, at least two millio Spaiards left to go to other Europea coutries ad aother 1.5 millio became seasoal agricultural laborers movig betwee coutries such as Frace, Switzerlad ad the UK. New Europea eeds ad ew migrats This patter of post WWII Europea migratio agai chaged i the 1980 s whe the establishmet of the Europea Commuity, icludig Greece, Italy, Portugal ad Spai bega to produce dramatic improvemet i stadards of livig ad i doig so reduced the eed for Europeas to leave to seek work elsewhere. The chage i migratio eed, coicided with uexpectedly rapid falls i Europea birth rates ad a growig logevity of older people. Together, these pheomea gave rise to the growth of ew service idustries ad a demad for ew blood that could oly be met through the arrival of people from outside the EU, ad for the first time i history, Europe became a pole of attractio for people as opposed to a seder of people. Migratio from former coloies ad the a wider spectrum of coutries quickly took hold ad created a patter of migratio from developig coutries ad from coutries i trasitio. Migratio ad migrats as cotroversial Despite its prove historical importace for both sedig ad receivig coutries, migratio has become cotroversial ad at times coflictive (G.F. Gesii et al., 2004). Today, whe the ecoomic ad social beefits of migratio ito the EU have bee well documeted, ad whe overall et EU migratio is still relatively low, there is still a tedecy for the i-migratio of people from outside the EU regio to be questioed ad at times rejected. Oe of the implicatios of this questioig, if ot rejectio, of migratio ad migrats has bee that Europea coutries have o the whole bee caught uprepared to respod to the public health challeges that are ievitably associated with the arrival of large umbers of people from disparate coutries ad with differet health experieces. 66

67 Types of Migratio Ad Migrats The term migratio covers a wide rage of movemet, the motives for it ad the coditios uder which it takes place. It is evertheless importat to keep i mid that ot all migrats come from the same type of backgroud, or do all migrats move for the same reasos ad uder the same circumstaces. The vulerability of migrats from differet backgrouds to commuicable ad o-commuicable diseases is likely to be differet ad so is their capacity to respod to their health eeds ad participate i atioal public health programs. Much of the literature o viral hepatitis (ad health/disease i geeral) ad migratio does ot address these qualitative differeces. The most importat forms of migratio from the perspective of the umbers of people ivolved iclude: Ecoomic migratio Poverty ad the desire for a better life cotiue to be amog the most importat factors motivatig people to move. The fact that both real ad relative poverty is becomig more proouced, ad that the gap betwee rich ad poor coutries is growig, this type of migratio is likely to cotiue. The rage of people movig for ecoomic reasos is broad, ad icludes highly skilled migrats from good social ad ecoomic backgrouds. However, the largest portio of migrats is, ad will cotiue to be, made up of people fleeig disadvataged socioecoomic ad evirometal backgrouds, where the prevalece of HBV ad HCV, as well as may other commuicable diseases, is high ad certaily higher tha i most EU coutries. Rural to urba migratio Although rural to urba migratio is rarely metioed, it is probably the sigle most importat form of migratio i developig ad rapidly idustrializig coutries. I Chia, up to 3.5 millio people are estimated to move betwee rural areas ad cities every moth, ad although these same types of figures are lower i other coutries tha i Chia, they are evertheless proportioately very high. Whe lookig at commuicable diseases for which data are available, such as HIV ad TB, it is clear that rural-to-urba migratio presets may of the same challeges as iteratioal migratio. Those who move ted to be from poor backgrouds ad move ito poor, crowded social ad physical eviromets that are replete with opportuities for exposure to a variety of ifectious diseases. Irregular or udocumeted migratio Social ad political attitudes to migratio have become more striget i recet years, ad coutries have itroduced measures desiged to make i-migratio (eve for short periods) more difficult. Cotrary to may expectatios, the result has ot bee a dimiutio i the umber of people movig, but rather a marked icrease i the umber of people movig irregularly across borders, deliberately usee by atioal ad local authorities, icludig those resposible for public health. Although it is difficult to defie exactly how may people are ivolved i this irregular migratio, the umber is thought to be growig ad possibly exceedig the umber of people movig officially ad i a recorded fashio (Carballo et al., 2004). From the perspective of public health ad viral hepatitis prevetio ad cotrol, irregular migrats preset difficult challeges. Not oly do they remai usee ad beigly eglected by local authorities, but they also remai largely ureached by health iitiatives. Their coditios of life, which are ofte characterized by overcrowded ad promiscuous housig, poor hygiee, frequet mobility withi ad betwee cities, margializatio from health care systems ad a reluctace/fear of beig idetified by judicial authorities, make the task of reachig them with screeig, early diagosis ad treatmet difficult. 67

68 Smuggled migratio Some irregular migrats travel uaided, usig their ow meas to cross borders, but may others pay to be smuggled ito coutries of fial destiatio. While may pay i cash prior to relocatio, others arrage to pay over time oce they are re-settled i coutries. Wome who are smuggled are at risk of beig asked to provide sexual favors or to work i sex trade much the same way as trafficked wome are (see below). Their rights to complai ad/or brig charges agaist smugglers are costraied by the fear of beig picked up by police ad set back to coutries of origi. Their access to, ad use of, health care services is limited by fear of beig reported to legal authorities ad also by the fact that may are igorat of what services exist ad how to use them, icludig i the cotext of sexually trasmitted ifectios. Trafficked migratio The last twety years have see a major icrease i traffickig, especially of wome. Estimates of the umbers ivolved i this moder form of slavery vary cosiderably but the Europea Commissio has referred to 120,000 wome ad childre trafficked ito Wester Europe every year (Salt ad Hogarth 2000) ad the Iteratioal Orgaizatio for Migratio has put the global umber of trafficked people at over 12 millio (IOM, 2009). Most of the wome who are trafficked are forced ito illicit sex work that is poorly supervised i terms of health. Trafficked wome are usually moved frequetly betwee cities i order to prevet them developig social etworks ad their optios of seekig or receivig health care for sexually trasmitted ifectios as well as other health problems are few ad of little iterest to their maagers. The risk of sexually-acquired viral hepatitis amog trafficked wome is ot kow, but deserves to be see as a potetially major problem. Political migratio Coflicts remai a major cause of forced migratio ad the last twety years have see the umber of refugees (people forced to flee across borders) ad iterally displaced people (people who have to flee but remai withi their atioal borders) come to costitute a sigificat proportio of all people o-the-move aroud the world. Most refugees move from, ad to, other developig coutries, but a sigificat proportio of them evetually make their way to EU coutries. Sice 1951, the rights of refugees, icludig the right to health care, have bee protected by the Iteratioal Covetio o the Rights of Refugees, which i 2002 was ratified by 141 coutries. The rights of IDPs, however, icludig their health, essetially remais the resposibility of their ow govermets ad is ofte eglected, if ot further abused oce they flee. May IDPs as well as refugees go o to leave their coutries of origi ad make their way to third coutries, icludig EU coutries. I the case of both refugees ad IDPs, the social ad evirometal coditios i which most of them are forced to live, eve temporarily, ted to be poor ad coducive to the spread of ifectious diseases. Meawhile, few if ay, humaitaria relief programs, icludig those maaged by the UN, have take up viral hepatitis as a theme for actio. Evirometal migratio Evirometal degradatio ad disasters are a importat ad growig force i the displacemet of people, ad the umber of people ivolved has bee steadily growig. Global warmig, ad the may socio-evirometal chages that are predicted to come i its wake, are expected to displace eve more people i the comig years (Carballo, 2010). Some estimates have referred to as may as two hudred millio people beig forced to move as a result of risig sea levels, floodig ad coastal erosio i some regios, ad chroic, worseig drought i others. Most of the burde of climate chage will be bore by developig coutries where the prevalece of viral hepatitis ad other commuicable diseases has traditioally remaied high, ad where atioal health care systems cotiue to be weak. For may of the people who will be forced to move, there will be few ecoomic opportuities ad most are expected to move ito settigs of poverty where the exposure to viral hepatitis will cotiue to be high ad where for girls ad wome sex work will probably become oe of the survival optios (Carballo, 2010). 68

69 Educatioal migratio By the ed of the 20th cetury the educatioal sector had become a iteratioal multi-billio dollar idustry ad a major driver of huma mobility (Carballo et al., 1997; DiCerbo, 2001). Usually ot cosidered as migrats, people movig to pursue educatioal careers ted to move from developig to developed coutries ad share may of the same health ad health care challeges with other migrats. Circular migratio Improved trasportatio has made it icreasigly possible for people to be give very short-term work cotracts. This together with the seasoal ature of some types of migrat work (such as i agriculture), has made circular migratio i ad out of the EU icreasigly commo. Withi this circular system, migrats come ad go for periods of moths, creatig a costat flow of people movig betwee differet socio-ecological ad health zoes. Circular migrats costitute a growig body of people about whom little is kow ad whose health ad health care is difficult to track. They are ofte udeclared by employers ad the temporary ature of their work makes it easy for employers ot to provide health coverage. Their livig coditios meawhile, are ofte poor ad health-risky. Tourist migratio The last three decades have see a rapid ad still acceleratig growth i tourism, that is to say people travellig with the itetio of stayig "i places outside their usual eviromet for more tha twety-four (24) hours ad ot more tha oe cosecutive year (WTO 1995). They move for purposes of leisure ad busiess rather tha work. I 2008, there were over 922 millio recorded iteratioal tourist movemets ad the predictio is that by 2020 the global umber of tourists will exceed 1.6 billio people (WTO 2009). The World Tourism Orgaizatio (WTO) estimates that i 2004 about 461 millio tourists visited HBV-edemic coutries. Give the chagig ature of tourism ad the fact that people are ot oly movig further but also ito ew more itimate iteractio with local ad disparate groups of people, the risk of HBV ifectio is beig heighteed (El Sayed et al., 1996) ad eve though a recet Dutch study cocluded that the risk of short-term tourists acquirig HBV is o higher tha it is for people who do ot travel (Suder et al., 2009), the fact is that sex tourism is growig (Michalowski, 2001; Leidholdt, 2005) ad brigig people from low edemic coutries ito cotact with sex workers ad others i coutries with far higher rates of both HBV ad HCV. Sex tourism may thus costitute a vital part of the viral hepatitis movemet chai. 69

70 Defiig the Challege Despite the social, ecoomic ad health importace of migratio, there are few precise figures o the umber of people movig i ad out of coutries, or the coditios uder which they are movig. Numbers ivolved globally Official UN figures (UN 2005; IOM 2005) suggest that upwards of 200 millio people ca be defied as livig outside their place of birth, but this does ot take ito accout the massive umber of people movig from rural to urba areas, refugees ad the growig umber of IDPs, the people movig irregularly across borders, the growth of regular ecoomically-motivated migrats movig for log periods of time betwee coutries, the people beig trafficked ad the circular migrats people movig to ad from coutries for shorter periods of time. If all these people are icluded, the true umber of people o the move who have the capacity to chage the global epidemiology of viral hepatitis, as well as other commuicable ad o-commuicable diseases, could be at least ad is probably far more tha oe billio (UNAIDS 2008). Numbers ad fluidity of movemet i the EU Just as with overall global estimates, it is difficult to say with precisio how may people are movig ito ad withi the EU regio or for what periods of time. The movemet of people, however, is growig i size ad scope. Eurostat reports suggest that i 2005, the EU had a et gai of 1.8 millio people (Eurostat 2006), ad this does ot iclude people eterig irregularly ad possibly doublig the umber of recorded ewcomers. The EU Blue Card system, desiged to facilitate the movemet of skilled third coutry workers to eter, work ad live i parter coutries, will gradually facilitate eve further movemet betwee EU coutries, some of which have very differet public health profiles. I some coutries, such as the UK, the 565,000 ew people who arrived i 2005 primarily from Asia ad Africa were offset by approximately 380,000 people who left the UK to go to other coutries such as Spai ad Frace, both as retirees ad workers (ICMHD, 2009), but i geeral more people are arrivig tha leavig the EU. While it is difficult to say exactly how these movemets are affectig the overall health profiles of coutries or atioal health care systems, there is o doubt that health care eeds are chagig (Carballo, Divio ad Zeric, 1997). Proportio of domestic populatios The extet to which the arrival of people from other parts of the Europe ad the larger world is chagig the demographic structure of receivig coutries varies cosiderably. The demographic impact of ewcomers i small coutries such as Luxembourg ad Lichtestei has bee more marked tha i larger coutries, but i may parts of the EU ad especially i the wester part of Europe, foreig-bor people costitute a relatively large proportio of the total populatio of coutries. I Luxembourg ad Liechtestei, migrats ow costitute about a third of the total populatio, ad i Switzerlad (EFTA coutry), they make up 23% I Austria ad Irelad, they represet about 14% of the populatio ad i Germay, Swede, Spai, Frace ad the Netherlads about10% ad 12% of the populatio (ICMHD 2009). 70

71 Coutry Percetages of migrats i selected Europea coutries Liechtestei 33.0% Luxembourg 33.0% Switzerlad 25.0% Ukraie 14.7% Austria 14.0% Irelad 14.0% Germay 12.3% The Netherlads % Spai % Swede % Frace 10.0% Uited Kigdom 9.0% Russia 8.5% ICMHD 2009 Diversity ad distributio The rage of coutries migrats arrive from ca be a importat idicator of their health profiles people ad what the implicatios of this may be for the health system of host coutries. I Italy, where about 5 millio migrats are officially kow to have arrived i recet years, ad where the umber of irregular migrats may be almost as high, the diversity of backgrouds has cotiued to grow. Asia migrats have become icreasigly promiet ad ow exceed migrats from North Africa. Eve so they oly represet about 16% of the total migrat body which icludes as may as 2 millio Romaias, as well as ewcomers from Ukraie, Polad, Moldova, Macedoia, Serbia, Bulgaria, former East Germay, Bosia, Russia, Croatia, Slovakia, ad Hugary all of whom ow make up approximately 54% of the migrat populatio i Italy. People from North ad Sub Sahara Africa costitute a estimated 22% of migrats ad people from Lati America about 8.1% (Eurostat 2007). As i other EU coutries, most (87%) have settled i parts of the coutry where there is a labor demad ad a relatively good absorbability potetial. How may more people are likely to arrive i the EU Migratio is essetially a supply ad demad pheomeo ad to date migratio ito the EU has reflected the growig eed for ew people to compesate for dramatically fallig birth rates, rapidly agig populatios ad icreasigly fragile social security systems. The UN estimates that i order to keep ecoomic ad demographic support ratios at their 1995 level, as may as 15 times more migrats tha arrived i the 1990s will be required (UN 2001). Thus irrespective of whether these figures are attaiable or politically acceptable, the fact is that the EU will ievitably see migratio cotiue to grow for may years to come. 71

72 Where will they come from ad how will they get there With time the backgrouds of migrats ca be expected to become icreasigly diverse as the felt eed to leave coutries chages ad as opportuities for trasportatio improve. Util the middle of the 20th cetury, whe most Europea migrats wet to the USA, Caada, Australia the routes they took were relatively direct ad ivolved few, if ay, stopovers. I the cotext of cotemporary migratio this has chaged, ad especially i the case of people who move irregularly, the process is becomig loger, more circuitous ad ivolvig may stopovers whose duratio ca last moths or eve years. Durig these stopovers, migrats work ad live i poor social ad evirometal coditios that are replete with risks for ew or aggravated ifectios such as viral hepatitis. Figure 2: Key Migrat routes from Africa to Europe BBC Figure 3: The log road to Europe BBC 72