Hepatitis C - Sosfegato.it

Summit ConferenceHepatitis B and Hepatitis CBrussels, 14-15 October, 2010

Sponsoring PartnersFor questions with regard to the Conference or its ongoing programme please contact:Prof. Angelos HatzakisCo-Chair of the Steering GroupEmail: ahatzak@med.uoa.grcopied to:Marilyn ClarkSecretary to the Steering GroupEmail: clarkme@pt.luMobile Telephone: (+352) 621 367 532

Table of contentsIntroduction 5Steering Group and Advisory Group 6Executive Summary - Patient Self-Help in Europe 8Executive Summary - Migration, Hepatitis Band Hepatitis C 12Patient Self-Help in Europe 17Migration and Hepatitis B and Hepatitis C 613

Steering Group and Advisory GroupAdvisory GroupMarita van de LaarProgramme Coordinator, STI including HIV/AIDSand bloodborne virusesEuropean Centre for Disease Prevention and ControlStockholmPierre van DammeDirector, Viral Hepatitis Prevention BoardAntwerpSteering GroupCO-CHAIRSAngelos HatzakisDirector, Department of Hygiene, Epidemiology & Medical StatisticsAthens University Medical SchoolNadine PiorkowskyPresident, European Liver Patients Association.Massimo ColomboChairman, 1st Division of GastroenterologyFondazione IRCCS Maggiore Hospital Policlinico, Mangiagalli e Regina ElenaUniversity of MilanTREASURERRafael EstebanLiver Unit, Department of Internal Medicine,Vall d'Hebron University Hospital, Barcelona6

MEMBERSManuel CarballoExecutive Director, International Centre for Migration, Health and Development (ICMHD) GenevaCharles GorePresident, World Hepatitis Alliance, GenevaChief Executive, The Hepatitis C Trust, LondonHarry JanssenChairman, Dutch Association of HepatologyHead, Liver Unit, Rotterdam Erasmus University Medical CenterMichael MannsDirector, Department of Gastroenterology, Hepatology and Endocrinology,Hannover Medical SchoolPatrick MarcellinService d'Hépatologie, Hôpital Beaujon, APHPUniversity of ParisGeorge PapatheodoridisAthens University Medical SchoolHippokration General Hospital, AthensProf. Howard ThomasHead of Department of Hepatology and GastroenterologyImperial College, LondonDominique VallaEU Policy Counsellor, European Association for the Study of the LiverHeiner WedemeyerSecretary General, European Association for the Study of the LiverSECRETARY TO THE STEERING GROUPMarilyn ClarkCorporate Secretary, Hepatitis B and C Summit Conferences Association asblLuxembourg.7

Executive Summary:Hepatitis Patient Self-Help in EuropeThe European Liver Patients Association (ELPA)PurposeThis report presents the results of a survey of 20 European liver patient groups concerning the threat of viral hepatitis in theirrespective countries. The report seeks to illustrate the important contribution patient self-help can make to a country’s public healthsystem, by supporting patients and their families, educating healthcare professionals and raising public awareness. Furthermore,the report aims to identify good practice from different Member States in viral hepatitis-related public health projects and to outlinethe challenges that remain.Viral HepatitisViral hepatitis B and C are some of the most dangerous infectious diseases in terms of mortality, transmission and disease burden.In Europe, 14 million people are infected with chronic viral hepatitis B (HBV) and 9 million people with viral hepatitis C. 36.000 peoplein Europe die each year due to HBV-related causes, while 86.000 people succumb to HBC-related diseases.General awareness of the health risks associated with viral hepatitis is very low. Surveys suggest that only 21.5% of Europeanhepatitis patients knew of viral hepatitis at the time of their infection (23% for viral hepatitis B and 20% for viral hepatitis C) and only27% knew that they were at risk of becoming infected (both for viral hepatitis B and C).Low awareness is dangerous, as the long-term consequences of late diagnosis – liver cirrhosis and liver cancer – can be severeand potentially fatal. 75% to 85% of cases of primary liver cancer are attributable to chronic infections with viral hepatitis B or viralhepatitis C. Liver cancer is the third highest cause of cancer deaths worldwide, and in Europe, liver cancer-related deaths haveincreased significantly over the past two decades.Lack of awareness also extends to policy-makers: viral hepatitis is simply not on the radar screen of decision makers. Europeanpolicies thus far have focused almost exclusively on primary prevention through vaccination and there is an urgent need to introducestrong measures to prevent the spread of viral hepatitis and further the identification of viral hepatitis patients.Survey FindingsThe patient associations interviewed vary considerably in set-up, size and staff, with volunteers making up 72% of human resources.Lack of funding is a constant challenge, and the pharmaceutical industry is the major source of financing, often complemented bypublic sector/government funding and donations from the general public. All patient associations have diversified their fundingsources and are therefore not dominated by one single pharmaceutical company.Patient groups across Europe are active in a variety of ways. Most of their activities focus on counseling and awareness-raising.Counseling is fundamental to the objectives and missions of each patient group and patient groups. Counseling involves direct interactionwith patients to support them and their families through information on the disease, treatment options and centres of care. The psychologicalsupport provided by patient groups is critical as this aspect of the disease is largely neglected by medical centres and hospitals.8

Awareness-raising aims to increase the knowledge of liver diseases amongst various target groups. Existing disease awarenesscampaigns target both the general public as well as specific risk groups, such as intravenous drug users, prisoners or tattoo artists.World Hepatitis Day (May 19th) constitutes an important milestone for patient group activities, which may include free testinginitiatives, distribution of informational flyers or brochures and launching advertorials in the media.Patient groups also engage extensively with other stakeholders. In particular, the support received from specialists is already wellestablished. Celebrities have been willing to some extent to cooperate. Building relationships with policy makers is not always easy,however significant progress has been made in many countries. The most problematic interaction is with general practitioners, who veryoften are not sufficiently trained to recognise the symptoms of liver disease and are often reluctant to participate in trainingprogrammes or to lend support to awareness raising campaigns.Access to treatment is not a significant issue in most Member States. In particular, Eastern European countries, such as Bulgariaor Croatia have recently made tremendous progress and provided special funds for viral hepatitis treatment, owing largely to theefforts of the patient groups in question. Waiting times for treatment have also been greatly reduced in these countries. On theother hand, waiting times in Poland, can still amount to 3-5 years.In terms of prevention, many countries have adopted vaccination programmes for children but practices remain uneven across Europe.For example, Bulgaria was one of the first countries in Europe to introduce childhood vaccination in 1992. Yet there are still gaps amongvulnerable groups, e.g. the Sinti and Roma. Considerable efforts also need to be made to capture age groups born before 1992.The greatest challenge remains in the area of secondary prevention, i.e. screening. Targeted screening campaigns have been verysuccessful in some countries such as the Silesia region in Poland and in Blackpool in England, where mortality rates from chronicliver disease are very high. But to date, only France and Scotland have instituted a government-led programme to improve screeningin a sustainable and comprehensive manner.Conclusions and RecommendationsThis survey shows that patient groups are doing a fantastic job, considering the small scale of their operations and the challengesthey face. They have managed to achieve significant results in a number of areas over recent years, gradually increasing theircompetences and output. If it were not for the consistent efforts of patient groups, in the majority of countries investigated therewould not be any viral hepatitis awareness-raising campaigns. Patient groups fill the gap, frequently with official support andapproval, trying to tackle the challenge of consistently low public awareness.The three main challenges that continue to face patient groups are: lack of good quality data on both the scientific and economicaspects of viral hepatitis; the high level of stigma surrounding viral hepatitis, and the general lack of interest or incentive on the partof health professionals and in particular, general practitioners, to become better informed about the condition.In conclusion, proper national strategies are clearly needed to make a difference and reduce the burden of the disease by identifyingand treating a greater number of viral hepatitis carriers. At the European level, a Council Recommendation on viral hepatitis B andC screening of risk groups would be a powerful tool in this context. Also, if Europe is serious about tackling its viral hepatitis challenge,Member States, guided by the EU, need to work in a concerted manner. Viral hepatitis knows no borders and efforts in one Europeancountry can be undermined by less consistent efforts in a neighbouring state. There is therefore a clear need for greater crossbordercoordination and an EU-wide approach to implement screening strategies, target risk groups across Europe and maketackling viral hepatitis a public health priority.9

Patient group achievements and contributions:The report provides a comprehensive description of the achievements and contributions of different patient groups across Europe.Some of the most notable examples are presented below:AWARENESS RAISING:nnnnnnAustria: In cooperation with regional sick funds, so-called info-points for a healthy liver have been created, where patients andtheir carers can obtain free and anonymous support from teams including hepatologists/gastroenterologists and psychologists.Belgium: The patient organisation recently published a book with medical advice and testimonials from patients. It has alsosent out letters and materials to all municipalities to support awareness-raising on viral hepatitis, which has already receivedsome positive feedback.Portugal: The patient association has a considerable number of celebrity public supporters ranging from footballers to rockmusicians and Members of the European Parliament.Romania: A recent campaign targeted school children and teenagers from 9 pilot counties. The objective was to provide themwith information on viral hepatitis A, B and C. Children were invited to informal debates conducted by volunteers.Spain: The patient association has partnered with the Ministry for Health to organise ‘work tables’ to address the topic of viralhepatitis and to present concrete cases.Bulgaria: The patient organisation succeeded in making viral hepatitis a topic in the Bulgarian version of the popular TV show,“Big Brother” on the occasion of the World Hepatitis Day 2009, raising awareness of the diseases, its risk groups and the needto get tested.HEALTH PRACTITIONER EDUCATION:nUK: One prominent patient group is developing an online learning tool on viral hepatitis C for general practitioners in collaborationwith the Royal College of General Practitioners.RESEARCH:n Italy: The Ministry of Health has agreed to carry out a prevention study, results of which will be released in 2011.SCREENING:nnPoland: A screening campaign in the Silesia region got 5000 people to be tested for viral hepatitis C and revealed anidentification level of 1.5%. The campaign was widely picked up by media.Belgium: Viral hepatitis tests are not included in general check-ups.10

ACCESS TO TREATMENT:nCroatia: The waiting time for treatment for viral hepatitis C has been reduced from 2 to 3 years in 2006 to an average of only2 months to date.POLICYMAKER OUTREACH:nGermany: The patient group has established long-term relationships with leading hepatologists but also with one of the formerhealth ministers (who is their patroness) and various members of the German government including the Health Ministry.NATIONAL POLICY ON LIVER DISEASE:nnFrance: There is a national plan for the fight against viral hepatitis B and C, and the Vice-President of SOS Hépatites, a largepatient group, is also the Vice-President of the national committee giving follow-up to the national plan.UK: The Government has committed to a National Liver Strategy and it has appointed a Liver Tsar to formulate it. Evidence thatliver is the only disease among the ‘big killers’ that is on the rise have proven key to achieving these goals.11

Executive Summary:Migration, Hepatitis B and Hepatitis CManuel Carballo, Rowan Cody, Edward O’Reilly, Anna Paola de FeliciInternational Centre for Migration, Health and DevelopmentIntroductionWhile fears surrounding the links between human mobility and the spread of diseases such as TB have long been around, concern hasonly now begun to be focused on viral hepatitis and its potential mobility. Yet given that almost 50% of the world’s population lives inareas of high chronic HBV prevalence and that global migration increasingly involves people from these areas, this focus is long overdue.WHO estimates that about 2 billion people are living with viral hepatitis, and that around 350 million have a chronic form of the disease.Migration in EuropeIn Europe, the movement of people is growing in size and scope. For the first time in history, the region has become more of areceiver than an exporter of people. Yet the topic of migration and migrants remains controversial. There is a tendency for thein-migration of people from outside the EU region to be questioned and at times rejected. As a result, European countries have onthe whole been caught unprepared to respond to the public health challenges that are inevitably associated with the arrival of largenumbers of people from disparate countries and with different health experiences.Defining migrationPrecise estimates of the number of migrants globally or within Europe are difficult to obtain. Official UN figures suggest that upwardsof 200 million people can be defined as “living outside their place of birth,” but this does not take into account the massive numberof people moving from rural to urban areas, refugees and the growing number of IDPs, the people moving irregularly across borders,the growth of regular economically-motivated migrants moving for long periods of time between countries, the people being traffickedand the circular migrants people moving to and from countries for shorter periods of time.Moreover, not all migrants come from the same type of background, nor do all migrants move for the same reasons and under thesame circumstances. The vulnerability of migrants from different backgrounds to communicable and non-communicable diseasesis likely to be different and so is their capacity to respond to their health needs and participate in national public health programmes.Viral hepatitis in European migrant populationsMuch of migration into EU countries involves the movement of people from parts of the world that have high or intermediate levelsof HBV and HCV. High HBV prevalence areas include much of Southeast Asia and the Pacific Basin (excluding Japan, Australia,and New Zealand), Sub-Saharan Africa, the Amazon Basin, parts of the Middle East, the Central Asian Republics, and a number ofcountries in Eastern Europe. In these areas, up to 90% of the population is estimated to be exposed to HBV before the age of 40,and 8-20% of these people become HBV carriers.In addition to the risks borne from their countries of origin, migrants and their offspring also tend to be more vulnerable to exposureto drugs (including alcohol and tobacco) than other people of similar socio-economic background. Drug dealers often target youngmigrants and children of migrants looking for a “way out” of difficult socio-economic circumstances or wanting to make a statementof rejection of both their parents and the host society. Migrant sex workers also constitute a particular risk group. A recent reportindicates that as many as 47% of all female sex workers in Europe are migrants, 47% of all transgender sex workers are migrants,and 32% of all male sex workers are also migrants.12

Barriers to careAdministrative rules and procedures can be important barriers to access and use of health care services for migrant communities.Complex, time-consuming processes that also call for work and residence permits, health insurance papers and permanentaddresses which irregular migrants can rarely provide are all reasons for not continuing with health care seeking.Individuals’ willingness to engage in health promotion and protection also depends on how they perceive health and disease andwhat they believe can be done at an individual and health system level to help them. This perception will in turn be mitigated byage, gender, ethnicity, occupation and linguistic ability.Policies targeting viral hepatitisAlthough viral hepatitis has come to constitute a major threat to health in the EU, the region is still characterized by a lack ofstandardized policies and practices, especially with respect to migrants. Most policies focus on primary prevention.VaccinationGlobally, 168 countries provide universal vaccination (infants and/or adolescents) but only 131 out of the 168 have achieved morethan 80% coverage with three doses. Within Europe, not all countries approach HBV immunization in the same way. The UK, Ireland,the Netherlands, Denmark, Finland, Iceland, Norway, and Sweden have adopted targeted vaccination strategies in which only thosewho are considered to be at high risk (such as healthcare workers, injecting drug users, those living with family members with HBV,men who have sex with men, sex workers, and people regularly receiving blood and blood products are routinely vaccinated. However,as more than 30% of those living with acute HBV infection have no identifiable risk factors, targeted population approaches arelikely to miss a sizeable proportion of those for whom vaccination would be justified. Of note, migrants from high or intermediateHBV prevalence countries have not been identified within this approach.ScreeningScreening of migrants is to be considered if policies are to reduce the burden posed by viral hepatitis on migrant communities.Screening must be done in an evidence-based way that defines when and how often screening should be offered and respects thehuman rights of those screened. Particular attention is needed to ensure that individuals are not stigmatised because of theirnational origin or their viral hepatitis status. Screening must also be accompanied by culturally-sensitive information and counsellingif HBV and HCV awareness is to be improved in migrant groups and stigma associated with viral hepatitis is to be reduced.Access to careAccess to all aspects of care remains a significant barrier for migrants. Poverty, distance and poor transport, low levels of parentaleducation in the case of children, and cultural, linguistic and religious differences are all important factors in determining the extentto which migrants can and do access proper care.ConclusionsThe field of migration and viral hepatitis is still at its infancy. Studies use different definitions and concepts of the dynamic nexus ofmigration and health. The problem of unofficial and unrecorded migration also poses a major obstacle to understanding how theprocess of population movement is affecting health in Europe.The evidence thus far calls for more and better tailoring of out-reach programmes that address the psychosocial, cultural, legal andeconomic factors that affect the capacity of migrants to participate in and benefit from public health initiatives targeting viral hepatitis.Far more attention needs to be given to providing migrants with information and education on viral hepatitis in languages and inways that are attractive and understandable. The diversity of the migrant population must be taken into account in the developmentof all policies and programmes. And finally, it must be recognised that often the problem is not simply one of migrant cultures butrather one of a broader denial of viral hepatitis in the general public. This must be overcome before anything else if national strategieson migrants are to be developed.13

FULL REPORTS15

Report onHepatitis Patient Self-Help in Europeby the European Liver Patients Association (ELPA)17

Report on Hepatitis Patient Self-Help in EuropeForewordThe following report showcases the work of liver patient groups in Europe, and investigates what impact, if any, they have on acountry’s attitude towards liver disease.Before doing so, it is first important to reflect on a couple of questions related to the legitimization and limitations of patient groupsin general, as well as the particularities of liver patient groups, more specifically.Like other organisations in the self-help domain, patient groups are set up by people who share a common concern or problem andwould like to take action. Patient groups provide fora to share experiences, exchange information and provide those affected bythe disease with moral and practical support. This “internal-facing” aspect of their work appears to be well-recognised andappreciated by non-patients, be they policymakers, healthcare professionals or the general public, who agree that patients shouldbe best placed to provide this kind of support to fellow patients.More problematic on the other hand seems to be the “external-facing” aspect of their work, i.e. the fact that patient groupsincreasingly campaign for what they call their rights, demanding access to early diagnosis, appropriate medication and generallyseeking to raise awareness of the disease: “You are only representing a small fraction of patients – in our role, however, we needto consider the greater good of public health”, patient groups are often told by policy-makers or public health authorities.It is certainly true that human-beings suffer from a multitude of diseases and conditions and that a specific patient group can onlyspeak of the disease(s) its members are suffering from. It is equally true that in light of limited resources, one has to find a fair wayof allocating the public health funding available according to the best possible use amongst all these different patients. Clearly, thisis not an easy task.Notwithstanding the above, one has to bear in mind that the rather abstract term “public health” means nothing else but the healthof a nation. For a nation to be healthy all these different diseases need to be addressed. Out of experience, countries which do notconfine themselves to spending a lot of money on treatment, fare much better in this endeavour. Instead, “good practice” countriesare also sufficiently forward looking and are hence installing measures that either completely prevent certain diseases in the future,or lighten their burden. This can be done by investing in measures which lower the risk of contracting the disease, which promoteearly diagnosis and the development of better treatment. Naturally, from their own experience, present-day patients are in a positionto give advice to decision-makers at various levels and on various issues – e.g. on how a public health campaign can be mademore effective, why patients are diagnosed so late, or how adherence to treatment can be improved.Representing 21 national patient groups who strive to be active in both the “fellow-patient/internal-facing” and “external-facing”field, the European Liver Patients Association (ELPA) does advocacy work mainly at EU level. Whilst usually covering a multitude ofliver diseases, the majority of our members focus on viral hepatitis B and C. This is why ELPA, for the time being, also concentrateson viral hepatitis B and C in its policy work.Outside the circles of public health specialists and gastroenterologists, viral hepatitis B and C are largely an unknown quantity inmore than one respect – awareness, symptoms, disease classification, to name a few. A survey conducted on behalf of ELPA revealsthat only 20% of patients had heard of the virus before their diagnosis and 27% knew of their risk. Furthermore, the disease isrightly described as a silent killer – it is rather asymptomatic and the disease can progress for decades with the infected personfeeling unwell, but without being really sick. Then, the carrier’s condition worsens rather suddenly and is frequently irreversible,because of the follow-on diseases which have developed unnoticed.This particuar disease progression attacking an organ of which nobody quite knows what it is actually there for, might explain therather disappointing echo in the media: there is no point denying that viral hepatitis patient groups sometimes look with jealousy atthe many headlines produced by HIV/AIDS or swine flu. This is not to say that we would advocate a return to eminence-basedpolicymaking. It is just that complete and comparable data are difficult and costly to generate and at the moment there seems to be avicious circle: no data – no problem, no problem – no money, no money – no data and ultimately no improvement of the situation.18

Despite the general lack of data (which is also related to the asymptomatic nature of the disease), there are examples of good,evidence-based action to take up the fight against viral hepatitis. In Europe, France and Scotland are examples of such good practice.More recently, and outside Europe, the U.S. have commissioned and adopted a national strategy on viral hepatitis and liver cancer.The following survey is meant to be a tribute to all those liver patient groups in Europe which want to make a difference to currentpatients, but also to the great number of those who do not yet know of their infection. As such, it illustrates the patient groups’initiatives and activities, the successes they have, the problems they face, the hopes they entertain for the future. Finally, it investigates,if their work is linked to relevant policy measures.Wishing you an interesting and insightful read.Nadine PiorkowskyPresident European Liver Patients Association (ELPA)19

Executive SummaryThe report aims to illustrate the important contribution patient self-help can make to a country’s public health system, by supportingpatients and their families, educating healthcare professionals and raising public awareness. On the basis of information receivedduring interviews with 20 European liver patient groups concerning the viral hepatitis threat in their respective countries, goodpractices in viral hepatitis-related public health projects in the different Member States are analysed while identifying challengesthat these groups are facing.Patient groups vary considerable in their set-up, size and staff. They work extensively with volunteers and engage mostly in counselingand awareness raising campaigns. Although facing budget constraints on a constant basis, patient groups are the only body toprovide patients with psychological support at the time of diagnosis and throughout treatment.The awareness raising campaigns are directed at the general public as well as specific risk groups. The World Hepatitis Day playsan important milestone for their activities including free testing initiatives, distribution of information in form of flyers or brochuresas well as launching advertorials in the media. A number of patient groups also directly interact with risk-groups such as drugaddicts, prisoners and tattoo studios.Patient groups engage extensively with stakeholders: in particular, the support received from specialists is well established.In addition, a number of celebrities have been cooperative and although building relationships with policy makers is not an easy task,significant progress has been made.While access to treatment is not an issue in the majority of Member States, the greatest challenge faced by patient groups is in thearea of secondary prevention, i.e. screening. Further challenges identified are the availability of sufficient scientific data on thehealth risk of viral hepatitis, stigmatization of the disease and insufficient cooperation on behalf of general practitionersrepresentatives.National strategies are therefore needed to reduce the burden of the disease by identifying and treating a greater number ofviral hepatitis carriers. Furthermore, viral hepatitis does not recognise national borders. There is therefore a need for greatercross-border coordination and an EU-wide approach on how to implement screening strategies. A Council Recommendation onviral hepatitis B and C screening of risk groups would therefore be a powerful tool in this context.20

IntroductionThe report collates and analyses the interview responses of 20 European liver patient groups concerning the viral hepatitis threatin their respective countries; the work they do; as well as the potential success they have had in advocating for sustainable policyinitiatives which seek to address and reduce this threat.The report seeks to illustrate the important contribution patient self-help can make to a country’s public health system, by supportingpatients and their families, educating healthcare professionals and raising public awareness. Furthermore, the report aims to identifygood practice in viral hepatitis-related public health projects which exists in some Member States at either national or regionallevel, and to outline the challenges that remain.With these findings, recommendations to policymakers and relevant stakeholders will be developed on how to further improve thesituation, encouraging them to engage in the fight against viral hepatitis and, together with patient groups, reduce the viral hepatitisrelatedburden.The report is divided in the following sections:nnnnnViral hepatitisMethodologyAnalysis of the responses- Size and set-up of the patient groups- Sources of financing- Main activities- Targets of awareness campaigns- EvaluationConclusion & RecommendationsSummary of patient group responses by country21

Report on Hepatitis Patient Self-Help in EuropeViral HepatitisViral hepatitis – what it isHepatitis is the Latin word for liver inflammation. It is characterised by the destruction of a number of liver cells and the presenceof inflammatory cells in the liver tissue. A person can develop hepatitis if they contract one of the viruses that can cause liverinflammation, or as a result of exposure to substances that can cause hepatitis such as alcohol, fungal toxins and certain medicines.The main symptoms of viral hepatitis start with tiredness, general malaise and slight fever. It can extend to an increased need forsleep, aching muscles and joints and periodic light pressure or pain below the right ribs caused by an enlarged liver. Jaundice is avery late symptom of chronic viral hepatitis and is a sign that the disease has become serious.However, many patients have no symptoms for a long time leading to a situation in which most infected people are unaware of theircondition. The greatest challenge for patients is therefore the timely identification of their infection.Viral hepatitis – what is its impactIn Europe, 14 million people are infected with chronic viral hepatitis B (HBV) and 9 million people with viral hepatitis C. 36.000 peoplein Europe die each year due to HBV-related causes, while 86.000 people succumb to HBC-related diseases. Viral hepatitis B andC are therefore listed among the most dangerous infectious diseases in terms of mortality, transmission and disease burden,comparable to communicable diseases such as influenza, MRSA and HIV/AIDS.The majority of viral hepatitis sufferers in Europe are unaware of their condition. In the case of viral hepatitis C, estimates by theEurasian Harm Reduction Network (EHRN - formerly the Central and Eastern European Harm Reduction Network - CEERHN) suggestthat up to 90% of viral hepatitis C carriers do not know that they are infected. 1This is confirmed by two surveys which ELPA has conducted amongst its members and fellow viral hepatitis patients.Throughout Europe, an average of only 21.5% knew of viral hepatitis at the time of their infection (23% for viral hepatitis B and20% for viral hepatitis C) and only 27% knew that they were at risk (both for viral hepatitis B and C).Viral hepatitis – why ignorance is dangerousThe long-term consequences of late diagnosis – liver cirrhosis and liver cancer – can be severe and potentially fatal. 75% to 85%of cases of primary liver cancer are attributable to chronic infections with viral hepatitis B or viral hepatitis C. 2 Liver cancer is thethird highest cause of cancer deaths worldwide, and in Europe, liver cancer-related deaths have increased significantly overthe past two decades (Figure 1).1 Eurasian Harm Reduction Network (EHRN), “HCV Infection in Europe”, 1 October 2007, available at:http://www.ihra.net/Assets/484/1/CEEHRNReportHCVInfectioninEurope2007.pdf2 Bosch, FX, Ribes J, Diaz M, Cleries R., Primary Liver Cancer: Worldwide Incidence and Trends. Gastroenterology 2004; 127: 5–1622

Figure 1: Increasing mortality due to liver cancer in Europe (1980 – 2004) 3GermanyAustrian 2002-2004n 1990-1994n 1980-1984FranceItalyPortugal02 4 6 8 10Age adjusted mortality rate / 100.000 menWhat is more, the peak in the number of patients suffering from cirrhosis and cancer, or of patients waiting for a life-saving livertransplant, has not yet been reached, as many of the chronically infected have not yet attained the advanced stages of the disease.This is why the World Health Organisation (WHO) has compared viral hepatitis to a “viral time bomb”. 4However, despite the serious health risks associated with it, viral hepatitis is not on the radar screen of decision makers, and thepublic is generally not aware of this threat. This lack of political will to introduce strong measures to prevent the spread of viralhepatitis and further the identification of viral hepatitis patients not only ignores the human suffering caused by the disease,but also disregards the considerable socio-economic burden placed on national health systems and the economy at large.Viral hepatitis – what is being done to tackle it at EU levelThe EU is focused almost exclusively on primary prevention; the prevention of contracting the virus. The importance of primaryprevention was highlighted in the 2006 European Parliament Resolution on “protecting European healthcare workers from bloodborneinfections due to needle stick injuries”. 5Only one EU initiative has so far sought to promote case-finding, the EU Council Recommendation on drug-related harm 6 , whichadvises Members States on how to identify viral hepatitis infected drug users. Again, ELPA is supportive of this EU legislation.However, there are other risk groups besides drug users, which need to be specifically addressed as well with a view to identifyviral hepatitis carriers before it is too late.3 Bosetti, C. et al. Trends in mortality from hepatocellular carcinoma in Europe, 1980–2004. Hepatology (2008) 48: 1374 World Health Organisation, Viral Cancers Fact Sheet, available at http://www.who.int/vaccine_research/diseases/viral_cancers/en/index2.html5 http://www.europarl.europa.eu/sides/getDoc.do?objRefId=93641&language=EN6 http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2003:165:0031:0033:EN:PDF23

Report on Hepatitis Patient Self-Help in EuropeMethodologyApproachIn order to assess the activities and the contribution of self-help patient groups across Europe, first as well as second hand informationhas been gathered. Given that this is the first evaluation of its kind on a European scale, a survey has been drawn-up specificallyfor this purpose (see Annex II). Where necessary, the survey has been complemented by additional literature and desk research.Survey StructureThe survey contains three sections. The first is designed to gather background information about the patient self-help group includingtheir activities, main practices, liver disease focus and working methods. The second section has been designed to extract quantitativeas well as qualitative information on the liver awareness raising campaign carried out e.g. outreach activities, the tools usedand possible relationship building with policy makers. The last section is dedicated to the evaluation, which is mainly targeted atassessing the results of the respective efforts, as well as the standing the fight against viral hepatitis has in the country’s publichealth programmes.Patient AssociationsIn order to obtain a representative picture of the patient self-help activities as well as the context in which the associations operate,information from 20 patient associations from countries all over Europe, including accession countries has been gathered throughthe survey.CountryAustriaBelgiumBelgiumBosnia HerzegovinaBulgariaCroatiaFranceGermanyGermanyItalyThe NetherlandsPolandPortugalRomaniaSlovakiaSpainSpainSwedenUKUKName of Patient AssociationHepatitis Aid AustriaCarrefour Hépatites-Aide et Contact (CHAC)Vereniging voor Hepatitis C Patiënten (VHC)The Chronic Viral Hepatitis Patients Association, "B18"HepasistHULOH/CATIH "Hepatos"SOS Hepatites FédérationDeutsche Leberhilfe e.V.Deutsches Hepatitis C Forum e.V.Educazione,informazione e Prevenzione sull'Epatite C (EpaC)The National Hepatitis CentreThe Star of HopeSOS Hépatites PortugalSano-HepHEP HELP KLUBAsociación Española de Enfermos de Hepatitis C (AsoEEHC)Associació Catalana de Malalts d'Hepatitis (ASSCAT)Riksföreningen Hepatit C (RHC)British Liver TrustThe Hepatitis C Trust24

Discussion and DialogueTo ensure the quality of the results, the survey has been carried out in the respective national languages where possible and inmost cases a translated version has also been provided. The survey was the basis for an actual interview, which was carried out byface-to-face meetings where possible or by phone.Viral hepatitis focusWhilst “liver diseases” are mentioned in the survey and in this report, the focus of ELPA (for capacity reasons) as well as for mostpatient groups lies almost exclusively on viral hepatitis B and C. These are the most frequent forms of liver disease and if undiagnosedcan lead to serious follow-on diseases such as liver cirrhosis and liver cancer. Whilst most patient associations interviewed provideservices also for other liver diseases, such as Haemochromatosis, non-alcoholic fatty liver disease, Morbus Wilson, or autoimmuneliver diseases, almost all have a strong focus on viral hepatitis. 17 out of the 20 patient associations have viral hepatitis evenincluded in their organisation’s name. In light of this, a strong focus is placed on viral hepatitis also in this report and a majority ofexamples relate to viral hepatitis.DefinitionsFor the purpose of this report, following definitions 7 , drawn-up by the World Health Organisation (WHO) are used for primary andsecondary prevention:nnPrimary prevention: This stage of prevention covers all activities designed to ‘reduce’ the instances of an illness in a populationand thus to reduce, as far as possible, the risk of new cases appearing; in speech and language therapy this mainly coversinformation and health education of a population, as well as training all those who have a role to play with the populationin question.Secondary prevention: This covers activities aimed at `reducing the prevalence of an illness in a population and thus to reduceits duration’; in speech and language therapy this mainly concerns identification and early screening.In addition, screening is understood as “the examination of a group of usually asymptomatic individuals to detect those with a highprobability of having or developing a given disease”. 8LimitationsThe limitations that were encountered in this process are twofold. Firstly, not all EU Member States have liver patient self-helpgroups or are yet fully established. Some countries such as the Baltic States therefore remained inaccessible for the purpose ofthis analysis.Secondly, the survey as well as the evaluation have been carried out by ELPA and are based on first hand information fromthe various patient groups. While this provides an important insight into their work and allows for key learnings to be identified,the views of other stakeholders on patient self-help such as policy makers, for instance, are not captured.7 World Health Organisation definition drawn-up in 1948, retrieved from http://www.cplol.eu/eng/prevention.htm#defin, August 20108 The American Heritage ® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company.retrievedfrom http://medical-dictionary.thefreedictionary.com/screening, August 201025

Report on Hepatitis Patient Self-Help in EuropeAnalysisPatient AssociationsSIZE AND HUMAN RESOURCESThe patient associations interviewed for the purpose of this assessment vary considerably in set-up, size and staff. The largestpatient associations in terms of employees are Sano-hep in Romania (24 employees), the UK Hepatitis C Trust (16 employees) andthe British Liver Trust (16 employees). Taking volunteers into account, SOS Hepatites Fédération, Hepatos from Croatia, Bulgaria’sHepasist, the Deutsche Leberhilfe, the Star of Hope from Poland and AsoEEHC Spain can also be added to this list.Figure 1: Number of Employees and Volunteers per patient association1009080706050403020100(250)Slovakia - HEP HELP KLUBGermany - DHCFBulgaria - HepasistCroatia - HepatosThe Netherlands - NHCUK - BLTFrance - SOS HepatitesBelgium - VHCRomania - Sano-hepItaly - EpaCSpain - AEHCBosnia Herzegovina - “B18”Poland - The Star of HopeGermany - Deutsche LeberhikfePortugal - SOS HépatitesBelgium - CHACSpain - ASSCATSweden - RHCUK - The Hepatitis C TrustSOS Hepatites Fédérationn Employeesn Volunteers26

The work of volunteers is fundamental to the work of all patient groups. For instance, Hep-Help from Slovakia, the Belgianorganisations VHC and CHAC, as well as the Portuguese SOS Hepatites and RHC Sweden, work exclusively with volunteers.Figure 2 illustrates that 72% of the human resources of the patient associations interviewed are volunteers. Clearly, their status asvolunteers has repercussions on the amount of work they can shoulder. While the majority of the people working for patient groupsare actual patients, they are helped by a number of volunteers of different backgrounds including specialists, doctors, scientistsand former patients.Figure 2: Percentage of employees and volunteersin all patient associations interviewedFigure 3: Sources of financing in %28%8.30%11.95%22.15%17.90%1.50%72%38.20%n Employeesn Volunteersn Privaten Donations/General Publicn Pharmaceutical industryn Industry other than pharmaceutical companiesn Public sector/government fundingn OtherSOURCES OF FINANCINGThe apparent lack of professional structures and to some extent operational practices is also the result of the lack of funding, whichpatient groups are facing on a constant basis. Their struggle to receive funding is reflected in the scattered nature of their sourcesof financing, as illustrated in figure 3.The pharmaceutical industry is the major source of financing for the majority of patient groups. This is often complemented bypublic sector/government funding and donations from the general public. Some patient groups also engage in exceptional activitiesfor fund raising such as the Chronic Viral Hepatitis Patient Association B18 from Bosnia-Herzegovina who organised a rock concertto raise funds in 2005.Patient groups are frequently being criticised for accepting funding from the pharmaceutical industry. In light of the difficulty of findingalternative funding sources and given their financial situation, patient groups do not have enough room for manoeuvre. In addition,all patient associations have diversified their funding sources and are therefore not dominated by one single pharmaceutical company.27

Report on Hepatitis Patient Self-Help in EuropeMAIN ACTIVITIESThe patient groups across Europe are active in a variety of ways. They engage mostly in counselling and awareness raising campaigns(see Figure 4). In addition, participating in scientific studies also constitutes an important element in their work. Activities indicatedfor ‘other’ include public policy and free-of-charge screening tests.The first core activity, counselling, is fundamental to the objectives and missions of each patient group. Their counselling activitiesentail direct interaction with patients to support them and their families through information on the disease, treatment options andmedical institutions. As illustrated in Figure 5, half of all patient groups interviewed advice more than 20 patients a week, includingup to 50 in the case of the UK Hepatitis C trust and the British Liver Trust as well as Bulgaria’s Hepasist, 30/40 in the case of thePortuguese SOS Hepatites and even up to 180 patients being advised by the Italian EPAC onlus.Figure 4: Main Activities of Patient Associations (%) Figure 5: Number of patients advised per week (%)16%15%14%34%50%15%36%20%n Counselingn Awareness raising campaignn Participation in studiesn Othern Up to 5n Between 5 and 10n Between 10 and 20n More than 20In addition the psychological aspect of the counselling work is significant and often constitutes the majority of patient groups’counselling activities. The psychological burden of the disease is a problem, which is largely neglected by medical centres andhospitals. Viral hepatitis is a disease that is highly stigmatised in the majority of countries as it is often considered as self-inflicted,through for instance drug-use or prostitution. The patient groups’ added value to the few existing contact points available to patients isclearly illustrated in this particular activity of psychological support. In some cases, assistance to receive legal support is also provided.28

The second core activity, awareness-raising, aims atincreasing the knowledge of liver diseases amongst varioustarget groups. As shown in Figure 6, the general public,policy makers, healthcare professionals and risk groups areidentified as the most important target groups for this purpose.Figure 6: Target groups at which the awareness raisingcampaigns are directed (%)7.90%18.40%Awareness-raising campaigns encompass a wide range ofactivities and can be designed relatively freely according tothe specific needs and purpose. The most common formsused by the patient groups interviewed are informationstands in public places, personal meetings with experts andpoliticians as well as seminars and roundtables. To spreadinformation and as a means of communication, the internet,e-mails and letters, leaflets, newspapers, specialised journals,television and radio are being used extensively.21.00%25.00%7.90%19.70%n Policy makersn Insurance companiesn Healthcare professionalsn General publicn Risk Groupsn OtherTARGETS OF AWARENESS RAISING CAMPAIGNSUp to 90% of infected people are not aware of their condition. Out of those diagnosed, 20% had never heard of viral hepatitis atthe time of their diagnoses and 27% did not know of their belonging to a risk group.As a result, both the general public and specific risk groups are targets of disease-awareness campaigns conducted by theinterviewed patient groups. The trigger for an awareness-campaign which usually lasts for two or three months is the World HepatitisDay (WHD), currently on 19 May, which also sets the global theme of the campaign. Only in Austria is WHD not that important adate, mainly because of the saturation of the Austrian media.Some patient groups, such as the Bulgarian Hepasist, Hepatos in Croatia, Leberhilfe in Germany or the British patient groups havea second, more home-grown campaign in the second half of the year. In addition to distributing information in form of flyers orbrochures and launching advertorials in the media, free public testing is offered.In addition to the general public, viral hepatitis risk groups, where the prevalence is higher than in the total population, are the targetfor campaigns and projects throughout the year:In Germany, the Deutsche Leberhilfe initiated a project on viral hepatitis prevention in the ‘Ruhrgebiet’ in cooperation with doctorswith a Turkish immigrant background, and with the support of the minister for integration of North-Rhine-Westphalia. The doctorsvisit Turkish clubs and cultural organisations, to provide information in Turkish about viral hepatitis B. This way, information aboutthe disease is disseminated with the aim of reducing further infections in the Turkish migrant risk group. Some patient groups runprojects raising awareness of viral hepatitis, its risk groups and transmission in prisons (Deutsches Hepatitis C Forum, HepatitisshilfeÖsterreich) and schools (Hepatitishilfe Österreich and Romanian SANOHEP), or preventing transmission at podologists or tattoostudios by defining hygiene standards. In the Netherlands projects are ongoing aiming at raising awareness and free screening onviral hepatitis in several migrant populations, including Chinese and Turkish citizens.Another important target group for awareness-raising are Healthcare professionals and in particular general practitioners. They have beendescribed by all patient groups as being insufficiently informed about the disease, since they are in theory best placed to diagnose the virus.29

Report on Hepatitis Patient Self-Help in EuropeIn practice, however, training programmes for general practitioners which specifically include liver diseases such as viral hepatitisdo not exist in any of the countries covered by the survey.Prompted by the national patient groups, Spain, however, has been willing to offer training seminars for general practitioners.Unfortunately, these were poorly attended. The British Hepattis C Trust also experienced the difficulty of disseminating local examplesof best practice in this context. Other patient associations organise such seminars themselves led by leading hepatologists.The Belgian-Flemish patient group VHC also publishes information on viral hepatitis in the Huisarts, a newspaper for generalpractitioners and the British Hepatitis-C Trust also developed an online learning tool on viral hepatitis C for general practitionerstogether with the Royal College of General Practitioners.Contact with policy makers has become a strong feature of patient group activities, bearing witness to the fact that only concertedpolicy measures can drive a sustainable improvement to the current situation.The Belgian-Wallonian patient group CHAC, for instance, has gained support from four senators (Georges Dallemagne (Cdh),Alain Destexhe (MR), Phippe Mahoux (PS) and Isabelle Durant (Ecolo) of the four main democratic parties to sign a charter to supportCHACs activities. The German Deutsche Leberhilfe works closely with former health minister Ulla Schmidt, who is now their patroness.The Spanish AsoEEHC is currently in contact with Rosa Ramírez Fernández from the Health and Consumer Ministry after submittinga request for viral hepatitis C screening. It has to be mentioned however, that only the organisations with sufficient resources,both human and financial, have been able to engage in this political outreach.With the media being generally disinterested in viral hepatitis, patient groups have sought to obtain public support from eithercelebrities who have suffered or are suffering personally from viral hepatitis or whose family members are vrial hepatitis patients.Portugal, for instance, receives support from the musicians Ze Pedro, Zutos e Pontapes, Karen Jardel and Rui Reninho. The Belgian-Flemish organisation VHC used as their ‘champion’ Jaap Pijpen, a well known TV personality who now publishes a magazine.The British Liver Trust is supported by Andy Fordham, a darts champion.Despite these successes, most patient groups have encountered problems motivating celebrities to make their experience withliver diseases public, due to fears of stigmatisation or possible implications for their image and careers.In summary, patient groups engage extensively with other stakeholders. In particular, the support received from specialists is alreadywell established; celebrities have been willing to some extent to cooperate; and although building relationships with policy makersis not always an easy activity, significant progress has been made. The most problematic interaction has, however, turned out to bewith the general practitioners, who very often are not sufficiently trained to recognise the symptoms of certain liver diseases andhave been reluctant to participate in trainings or to provide support for awareness raising campaigns.EvaluationOne can evaluate the work of the patient groups, as well as the general situation concerning viral hepatitis, using different parameters.As far as counselling is concerned, patient groups have successfully managed to provide advice and support to those who addressedthem. Clearly, this work could be expanded, if greater and more stable financial resources were available.As far as awareness-raising is concerned, it is rather difficult to measure success: one cannot measure “increased awareness”,and it usually cannot be link it to patient groups’ activities. In order to get some kind of indication, one can usually refer to theresults of free testing offers, which tend to be very popular across Europe. In terms of incidence, these testing results usually matchor surpass the data, provided by official sources.In Poland a screening campaign was carried out in the Silesia region. 5000 people were tested for viral hepatitis C, which revealedan identification level of 1.5%. The campaign was widely picked up by the media and around 50 information TV spots appeared.Similarly, in Blackpool, an area with the highest rates of mortality due to chronic liver disease in England, the British Liver Trustidentified 64% of those tested as having HCV.30

The availability of treatment is not an issue in the majority of Member States, according to the patient groups questioned. In particular,Eastern European countries, such as Bulgaria or Croatia have recently made tremendous progress and provided special funds forviral hepatitis treatment, owing largely to the efforts of the patient groups in question. Waiting times for treatment have also beengreatly reduced in these countries. On the other hand, waiting times in Poland, can still amount to 3-5 years.Bulgaria was also one of the first countries to introduce childhood vaccination as early as 1992. Croatia followed in 1998.While both countries state the need to further improve vaccination to also capture those groups who were born before this date,the difference is quite remarkable to Western countries, such as the UK, Sweden and the Netherlands, which have no universalvaccination for viral hepatitis B in place and reimbursement is not always guaranteed.Screening, the targeted case finding of those at risk, is the biggest concern of patient groups: with the exception of France andScotland, no government has made sustainable efforts to improve this. Progress has sometimes been made at a local level(e.g. England), leading frequently to delays in access to treatment. This might actually be the key reason why policymakers are soreluctant to engage in screening: they might think that one more patient identified means one more patient to treat.The relationships with policymakers take up more and more room in patient groups’ activities, provided they have sufficient staff tomanage those. However, this does not mean that they necessarily lead to outcomes. Policymakers, in particular those in publicoffice, tend to be afraid of the stigma associated with the disease (drug-user disease) and prefer to become active in other, moretangible disease areas with a “worthier” cause. Furthermore, some countries focus on Malaria or Tuberculosis, which is also mirroredby the priorities of the WHO‘s Global Fund, and are hence also “institutionalised priorities”.Austria and Germany are both examples where the government’s interest in viral hepatitis and liver diseases is very low, despitevarious efforts on behalf of both patients and specialist associations, as well as individual policymakers.On the other hand, the UK and Croatia are examples were the adoption of a liver strategy has either just been achieved or is withinreach. It remains to be seen how and when this will actually be implemented.Competition sometimes proves helpful in this context: The Scottish hepatitis C strategy, triggered by the Royal College of Physiciansin 2004, served as a cutting-edge example, which paved the way for greater efforts in England and Wales.Furthermore, the Croatian Hepatos was even made the WHO national focal point for viral hepatitis, upon recommendation of thegovernment, receiving WHO funding for 4 years.ChallengesThe majority of the patient groups interviewed have identified the following three challenges:nnnAvailability of data: there is only insufficient data available. This concerns not only scientific data, but also health economicdata, etc. Despite the active involvement of some patient groups (the Italian Epac was recently asked by the Ministry of Healthto conduct a study on prevention), this can only be changed through more consistent efforts.Stigma: Viral hepatitis is the most stigmatised disease – the element of guilt plays an incredibly large part in the decisions ofthose who could or should otherwise make a difference to public health;Health professionals, in particular general practitioners, have no interest and no incentive to become more educated as far asviral hepatitis is concerned. The experience in Spain, where government sponsored seminars for general practitioners werebadly attended, is a proof point for the lack of interest. The case of Bulgaria, where general practitioners are only allowed toconduct liver enzyme tests when jaundice is apparent (by which time they are actually superfluous), is a case in point forthe lack of incentives.31

Report on Hepatitis Patient Self-Help in EuropeConclusions and RecommendationsThe survey conducted by ELPA has sought to highlight the work of viral hepatitis patient groups throughout Europe, with a view toassessing national public health policies related to viral hepatitis since the beginning of patient advocacy.In a nutshell, patient groups are doing a fantastic job, considering the circumstances under which they operate: viral hepatitis patientgroups are usually small scale organisations, with volunteers being essential for the work of more than 75% of the patient groupsquestioned. Funding is frequently a problem, which can make advanced planning difficult. Furthermore, the overall lack of interestas regards viral hepatitis on behalf of the media and in particular health professionals has proved challenging.Nonetheless, patient groups have managed to achieve significant results in a number of areas over recent years, gradually increasingtheir competences and output. With health professionals under time and budget constraints, they are the only body to provide fellowpatients with psychological and practical support both at the time of diagnosis and throughout treatment, hence making a significantcontribution to patient adherence, which must not be underestimated.Furthermore, if it was not for the consistent efforts of patient groups, in the majority of countries investigated there would not beany viral hepatitis awareness-raising campaigns. Patient groups fill the gap, frequently with official support and approval, trying totackle the challenge of consistently low public awareness.The good work patient groups have been doing has proved to be an asset when they sought to make contacts with policymakers.This even led to situations where governments have recommended the patient group for certain tasks, or where governmentscommissioned patient groups with surveys or reports.Clearly, good links to policymakers are not automatically leading to viral hepatitis-related improvements in the areas of prevention,diagnosis and access to treatment. However, if such improvements did occur – expansion of childhood vaccination programmesfor viral hepatitis B, the launch of a liver strategy, reduction in waiting times for treatment, extra funding for viral hepatitis drugs –these developments could be linked to the efforts of a patient group.Generally, those countries fare best which recognise the added value patient groups can provide, and support them in their workwith a sustainable policy programme which is illustrated below.With vaccination and treatment having improved – not throughout Europe, but in quite a few countries, the biggest “health systems”challenge for patient groups is in the area of secondary prevention, screening.Targeted screening or case-finding amongst risk groups has proven effective in substantially increasing the number of identified viralhepatitis patients and enabled them to receive treatment, where appropriate, with a view to preventing serious follow-on diseasessuch as liver cirrhosis and/ or cancer. In reality, however, general practitioners across Europe hardly have viral hepatitis on their radarscreen at all, and efforts by patient groups and specialists, even supported by government funding, have frequently been made in vain.What is therefore needed is a proper national strategy to make a difference and reduce the burden of the disease by identifying andtreating a greater number of viral hepatitis carriers. While examples of such good practice do exist, they are confined to a fairlylimited territory, i.e. in regions like Scotland or EU Member States such as France.At a time when thankfully Europe is becoming more and more borderless and people have the right to travel and settle wherever itpleases them, the inertia of national decision-makers when it comes to putting in place policy measures is even more unsettlingand dangerous. As with all communicable diseases, viral hepatitis does not know any borders, and efforts in one European countrycan be undermined by less consistent efforts in a neighbouring state. There is therefore a clear need for greater cross-bordercoordination and an EU-wide approach on how to implement screening strategies and target these to risk groups across Europe.32

A Council Recommendation on viral hepatitis B and C screening of risk groups would be a powerful tool in this context.Although not legally binding, such a recommendation is signed by all 27 health ministers of the European Union and hence representsan important political commitment. Furthermore, member states would receive guidance on how to improve their efforts in detectingand treating unidentified viral hepatitis patients.If Europe is serious about tackling its viral hepatitis challenge, Member States, guided by the EU, need to agree on a concertedeffort. Waiting until the viral hepatitis problem will die out is not an option.Annex I: Country SheetsThis annex contains 16 country information sheets that have been put together on the basis of the information received during theinterviews with the patient groups. Each country sheet provides an overview on their assessments of the situation in the respectivecountries including the estimated viral hepatitis prevalence, general trends, as well as access to treatment and testing. In addition,background information on the national patient groups is provided together with an overview of their main activities and their contributionand achievements to date. Lastly, the country sheets contain a summary of the main opportunities and challenges ahead.AustriaTHE SITUATION IN AUSTRIAnnnnEstimated prevalenceIn Austria the estimated prevalence for viral hepatitis B is 0.9% and for viral hepatitis C it is 1.4%.TrendsWhile the trend of viral hepatitis B infections is going down because of free childhood vaccination, the effect is not very noticeablebecause of migration from high-endemic countries.Prevention & TestingFree childhood vaccination is available until the age of 15. However no targeted efforts to identify viral hepatitis cases are beingundertaken.TreatmentAll standard treatments are reimbursable in Austria.PATIENT GROUP IN AUSTRIAHepatitis Hilfe ÖsterreichnnBackground information“Hepatitis Hilfe Österreich” was founded in 1995 and works with 150 volunteers across Austria. “Hepatitis Hilfe Österreich”focuses primarily on viral hepatitis B and C, but also deals with fatty liver, cirrhosis and cancer, followed by haemachromatosis.Main activitiesApart from offering counselling, the “Hepatitis Hilfe Österreich” focuses on awareness raising activities directed at the generalpublic and healthcare professionals as well as at risk groups and prisoners.Partnerships with celebrities or professional associations are difficult. Nonetheless, a consensus statement with a generalpractitioner association could be adopted. Due to a certain oversaturation of the Austrian media, as well as fear of stigma onbehalf of politicians and celebrity patients, the World Hepatitis Day is not as big an event as in Germany.33

Report on Hepatitis Patient Self-Help in EuropenContribution and AchievementsIn cooperation with regional sick funds, so-called info-points for a healthy liver have been created, where patients and theircarers can obtain free and anonymous support from teams including hepatologists/gastroenterologists and psychologists.A seal of accreditation for piercers, tattoo artists, podologists and manicurists has also been introduced.OPPORTUNITIES AND CHALLENGES AHEADA major challenge faced by the “Hepatitis Hilfe Österreich” is to achieve a political statement from the government to promote riskgroup-specific screening and the inclusion of viral hepatitis in general check-ups.Apart from insufficient education amongst healthcare professionals and in particular general practitioners, the biggest challenge inAustria is the stigma which a viral hepatitis infection entails. Other diseases such as cancer are far more popular with the mediaand politicians.BelgiumTHE SITUATION IN BELGIUMnnnnEstimated prevalenceIn Wallonia the estimated prevalence of viral hepatitis B is 0.8% and that of viral hepatitis C is 1%. While the prevalence of viralhepatitis C is more or less stable, the prevalence of viral hepatitis B is on the rise, as a consequence of increased migration.In Flanders the prevalence of viral hepatitis C is also 1%.TrendsThere is a serious ignorance of, and lack of interest in, viral hepatitis from policy makers, healthcare professionals and thegeneral public. Despite the worrying figures, there is no or only scattered national or regional policies for primary and/orsecondary prevention of viral hepatitis. Viral hepatitis is not on the radar screen of policymakers, in particular compared toother diseases such as HIV/AIDS, which receive more public attention. Concrete policies aimed at primary and secondaryprevention of viral hepatitis are non-existent. Little progress has been made at the political level and there is no nationalawareness raising campaign in Belgium, however this is changing slightly.TreatmentWhile access to treatment is satisfactory and waiting times are short, there are considerable gaps in current reimbursementpolicies – these policies are insufficient for viral hepatitis C, and the situation has only recently improved for viral hepatitis B.TestingViral hepatitis tests are not included in general check-ups.PATIENT GROUPS IN BELGIUMVereniging voor Hepatitis C Patienten (VHC)nBackground informationThe Vereniging voor Hepatitis C Patienten (VHC) is a Flemish organisation that was founded in 1989 to advise and help patientswith viral hepatitis and to raise awareness of the disease. It has around 500 members. In Flanders there is no other patientorganisation that focuses specifically on viral hepatitis. Patients mainly get information from doctors, libraries or the internet.They also receive information through other organizations which are not specifically focused on viral hepatitis like Sensoa (STD)or drug addict groups.34

nnMain ActivitiesBesides counseling, VHC focuses on raising awareness of viral hepatitis. Although it has limited resources, the organisationtries to reach as many people as possible. The campaign is targeted towards policy makers, insurance companies, healthcareprofessionals (especially general practitioners) and several risk groups (prisoners, drugs addicts, etc.). The organisation workstogether with many stakeholders like the BASL (Belgian Association for the Study of the Liver), Sensoa, de Sleutel (drug addicts),vzw Trefpunt (umbrella organisation of patient organizations), and also prisons. The VHC organises many different activities likeseminars, symposiums, or expert meetings. It also provides information stands and reaches out towards the media.Contribution and AchievementsOne of their latest and most successful campaigns was the organisation of an academic session in November 2009 whichwas attended by policy makers (including the governor of Antwerp) and healthcare specialists. This activity even led to alegislative proposal. In addition, the VHC recently published a book with medical advice and testimonials from patients. It hasalso sent out letters and materials to all municipalities to support awareness-raising on viral hepatitis, which has already receivedsome positive feedback. At the moment VHC is also trying to introduce viral hepatitis into a ‘soap’ on TV. In the past theymanaged to use celebrities to promote their cause and have succeeded in the past to have a godfather (Jaak Pijpen – knownfrom TV and publishes a magazine) and a godmother (Miss Belgian Beauty).Despite these efforts the VHC is still experiencing a lack of support and interest from policy makers and doctors. The VHCmainly regrets that there is still no national awareness raising campaign at political level. One of the reasons for the lack ofsuccess is the complex structure of the Belgian state which makes it difficult to know who to reach out to.Carrefour Hépatites – Aide et Contact (CHAC)nnnBackground information“Carrefour Hépatites – Aide et Contact” (CHAC) was founded in 2001 with the overall goal to help those infected with all formsof viral hepatitis and their families. The association has 5 volunteers, but their engagement depends on the specific activitiesundertaken. CHAC provides psychosocial counseling to viral hepatitis patients, and conducts numerous activities at differentpolitical levels to improve current regional legislation related to viral hepatitis screening and access to treatment. In particular,CHAC has conducted successful awareness raising campaigns in schools and amongst healthcare professionals (doctors,nurses) and insurances.Main activitiesThe organisation promotes numerous awareness raising campaigns which are directed mainly at policy-makers, healthcareprofessionals, risk groups, relevant third party stakeholders (AIDS groups, organ donation associations, organisations combatingalcoholism etc.) and the wider public. CHAC conducts the campaigns essentially through seminars, roundtables, expert meetingsor public information stands. Furthermore, CHAC organises media outreach activities in order to promote public support fortackling the disease. CHAC also regularly arranges bilateral meetings with disease experts and supports political declarationsboth at the regional (Wallonian) and the European level.Contribution and AchievementsCHAC has been successful in forming alliances with general practitioners, key politicians and relevant disease associations.The association has managed to raise awareness of viral hepatitis over the past few years and has achieved considerablesuccesses at the political level. In particular, the association has been able to secure the support of four councillors representingthe four main political parties in Wallonia, who have co-signed a charter to support CHAC’s activities.OPPORTUNITIES AND CHALLENGES AHEADOne of the main challenges to overcome in Belgium is the formal inclusion of primary and secondary prevention into the nationalhealthcare system. In general, raising further awareness of the disease amongst policymakers, healthcare professionals and thewider public remains a priority for both organisations. Policy makers should develop and implement a sustainable programme forviral hepatitis and a screening strategy.35

Report on Hepatitis Patient Self-Help in EuropeBosnia-HerzegovinaTHE SITUATION IN BOSNIA - HERZEGOVINAnnnnEstimated prevalenceIn Bosnia-Herzegovina (BH) the prevalence of viral hepatitis is of 1% for the hepatitis C virus and of 2% for viral hepatitis B.Testing and treatments (primary and secondary prevention) are both included in the national healthcare system.TrendsTo date there is insufficient data to assess whether the situation is improving. However, as the health services are improvingand governments make improved health initiatives more widely available it is expected that new infections will diminish in thecoming years.TreatmentTreatment is included in the national healthcare system and patients are able to access it by looking for a public health centre.However, the national healthcare system in Bosnia-Herzegovina is divided into three regions. This means that different regionsget access to medication at different times. In addition, there are different waiting times and different levels for quality of treatment.Government efforts to minimize these disparities do however exist.TestingTesting for viral hepatitis can be carried out in public healthcare centers for free but they are not mandatory.PATIENT GROUPS IN BOSNIA-HERZEGOVINA“B18” GroupnnnBackground informationThe Chronic Viral Hepatitis Association “B18” was founded in Bosnia-Herzegovina in 2004 and aims at supporting viral hepatitispatients in dealing with their difficulties related to the disease. The B18 reaches out to about 20 viral hepatitis B and C patientsper week and provides them with adequate and professional counselling as well as with the space and possibility to interactwith each other and to exchange views.Main activitiesAwareness raising campaigns organised by “B18” are directed at both policy-makers and the general public with a relativelypositive result. The “B18” group organises everything from seminars to expert meetings, to information stands in public placesand free testing opportunities. The organisation focuses on informing the population on preventive behaviours and how to dealwith the virus at a personal and societal level.Contribution and AchievementsThe organisation’s greatest achievement was the inclusion, in 2005, of viral hepatitis treatment available into the nationalhealthcare system after a long and successful media outreach campaign. Its national relevance as an actor in the field ismarked by its positive and effective work in informing people and supporting patients at a basic primary stage. The “B18”organisation meets with policy-makers around twice per year.OPPORTUNITIES AND CHALLENGES AHEADAfter having secured the right to treatment at a national level, the main challenge is to ensure the good functioning of the healthcareproviders and the proper attention to the disease from healthcare staff.Additionally, cooperation with policy-makers still needs to be improved at a local, regional and national level in order to securegreater influencing capacities.36

BulgariaTHE SITUATION IN BULGARIAnnnnEstimated prevalenceBulgaria does not have official data on the prevalence of viral hepatitis. It is however estimated that for viral hepatitis C,the prevalence ranges between 1% and 3%. These figures are confirmed by the results of patient group’s “Hepasist” anonymousfree testing activities. For viral hepatitis B estimates vary between 4% and 8%, which is again confirmed by “Hepasist”’s owntesting initiatives.TrendsThe trend for viral hepatitis C is rising but declining for viral hepatitis B thanks to childhood vaccination.TreatmentAfter the government’s decision in 2009 to remove the cap on the number of people which can be treated, people receivingtreatment tripled. All state of the art medicine is available now. Whilst treatment schemes still need to be optimized(e.g. currently, drug users do not receive treatment), waiting time also improved significantly since 2009 (from 2 years to 4-6 months).Prevention & TestingBulgaria was one of the first countries in Europe to introduce childhood vaccination in 1992. However, there are still gapsamong vulnerable groups, e.g. Sinti and Roma, and considerable efforts need to be made to capture age groups born before1992. No special programmes for secondary prevention or testing exist. For example, medical doctors are only allowed toundertake ALT tests, when the patients already suffer from jaundice.PATIENT GROUP IN BULGARIAHepasistnBackground informationHepasist is the national association for the fight against viral hepatitis in Bulgaria. It was founded in 2005 and works with5 employees and 15 volunteers across their three offices, their main office is in Sofia and the other two are regional offices.Their mission is to raise awareness of viral hepatitis and defending patients’ rights. In Bulgaria, the general trust in the publichealth system is very low. Hepasist therefore recommends clinics and facilitates the contact to specialist. In addition, there isan NGO specialised in the provision of psychological support during treatment. Hepasist primarily deals with viral hepatitis Band C patients (equally important). These are followed by viral hepatitis A patients, then cirrhosis/ liver cancer patients andlastly alcohol-related hepatitis and haemachromatosis.nnMain activitiesApart from counseling, the awareness-raising of viral hepatitis amongst risk groups, healthcare professionals and the generalpublic, as well as the provision of advice to policymakers are the main activities of Hepasist. Twice a year, Hepasist runs a two-monthlong campaign – one on the occasion of World Hepatitis Day and the other, more domestic, campaign in September/ October,reaching out to the media and offering free testings. Hepasist is in close cooperation with a cross-party group in the BulgarianParliament on social diseases. Whilst the relationship with the national GP association is patchy, Hepasist has launched a jointinitiative with the Bulgarian Dentist Association to promote the prevention of viral hepatitis infection at the dentist.Contribution and AchievementsRather spectacularly, Hepasist succeeded in making viral hepatitis a topic in the Bulgarian version of the popular TV show,“Big Brother” on the occasion of the World Hepatitis Day 2009, raising awareness of the diseases, its risk groups and the needto get tested. Furthermore, they campaigned actively and successfully for improved access to medication.37

Report on Hepatitis Patient Self-Help in EuropeOPPORTUNITIES AND CHALLENGES AHEADThe biggest challenges are the lack of education amongst general practitioners, the lack of good prevalence data and the generallack of funding available for the prevention of the disease. The Department of Health in Bulgaria concentrates on AIDS, malariaand tuberculosis, due among other reasons to the funding received from the Global Fund. Other diseases are also more attractive,as they are more tangible.Furthermore, liver enzyme tests and/or viral hepatitis tests should be part of the annual check-up that all patients are entitled toonce a year and free of charge. Furthermore, the Ministry of Health should adopt and implement a programme for primary (preventionof dissemination) and secondary (case-finding through testing) prevention.CroatiaTHE SITUATION IN CROATIAnnnnEstimated prevalenceThe estimated prevalence of viral hepatitis B in Croatia is 1% and 1.3% for viral hepatitis C.TrendsViral hepatitis is apparently on the rise. With regard to viral hepatitis B this is mainly due to the exogenous population growth,triggered by migration from Bosnia after the Bosnian War. This neutralizes the positive effects achieved through the introductionof viral hepatitis B vaccination in 1998.Prevention & TestingViral hepatitis B vaccination is available for all 12 year olds since 1998; in addition newborn vaccination has been introducedin 2007 and has been occasionally complemented by ‘catch-up programmes’ in several counties to capture the remaining agegroups. While progress has been made in secondary prevention, the level still has to be improved significantly.TreatmentGold standard treatment for viral hepatitis C patients has been achieved thanks to viral hepatitis being included in a specialfund for high-quality drugs. However, only one treatment was registered for viral hepatitis B. Since July 2010 two more drugsbecame available in Croatia. The waiting time for treatment for viral hepatitis C has been reduced from 2 to 3 years in 2006 toan average of only 2 months to date.PATIENT GROUP IN CROATIAHepatosnnBackground informationThe “Croatian Association of treated and ill with viral hepatitis - Hepatos” was founded in 2000 and works with 4 employeesand 23 volunteers. Their headquarters is situated in Split with two regional offices in two additional towns. Hepatos was primarilyconcerned with viral hepatitis C, but nowadays it is concerned with viral hepatitis B and viral hepatitis C and other viral hepatides.For patients with cirrhosis and/or liver cancer, Hepatos facilitates contacts with specialists. Hepatos engages mainly with patientsdirectly given that medical staff do not have the capacity to provide the necessary information nor to offer free psychologicalsupport. Their mission is to engage in local, national and international activities aiming at the prevention of the spreading of thedisease, decreasing discrimination and raising the quality of life of patients and families.Main activitiesIn addition to the counselling of patients, Hepatos undertakes an annual campaign to increase awareness of viral hepatitisamongst healthcare professionals, policymakers, risk groups and the public at large. This campaign usually lasts for two monthsaround World Hepatitis Day, including media appearances (402 hits in 2009 versus 17 in 2003) and the organisation of publicevents. Hepatos hosts seminars and roundtables with policymakers and public health experts, and offers free testing.38

Hepatos has cooperation agreements with the respective referral centres of the national Ministry of Health and Social Welfarefor chronic liver diseases and that for diagnosis and treatment of viral hepatitis. Upon recommendation by the Croatian Ministryof Health, Hepatos was made the WHO national focal point for viral hepatitis.Hepatos also works in partnership with the national association of gastroenterologists and can rely on celebrity patients fortestimonials. In addition, the WHO funding enables projects to promote general practitioner education, as well as adherenceamongst drug addicts.nContribution and AchievementsHepatos has successfully campaigned for better access to treatment and childhood vaccination. Politically, Hepatos was themain driver behind a resolution of the Croatian Parliament on the fight against viral hepatitis in 2009. The resolution wascomplemented by a consensus statement from representatives from the health and NGO sector concerning a national strategyfor combating viral hepatitis.OPPORTUNITIES AND CHALLENGES AHEADThe adoption and implementation of concrete measures, to promote risk group specific screening remains Hepatos’ main goal.Nonetheless, the lack of education on viral hepatitis amongst healthcare professionals and the lack of good data are seen as thebiggest challenge by Hepatos. Furthermore, other diseases get more attention due to WHO Global Fund activities. For the future,it will be important to ensure that the national strategy will be converted into a concrete action plan which all concerned stakeholdersare committed to implementing.FranceTHE SITUATION IN FRANCEnnEstimated prevalenceIn France the prevalence of viral hepatitis is around 0,89% for viral hepatitis C and 0.68% for viral hepatitis B. France is oneof the few countries in the EU which keeps track of official viral hepatitis data.TrendsThe “Institut de Veille Sanitaire” carried out a prevalence study in 2003-2004, which found that whilst the prevalence of viralhepatitis C is relatively stable, the prevalence for viral hepatitis B had been underestimated. Under the third National Plan forthe fight against viral hepatitis B and C (Plan national de lutte contre les hépatites B et C 2009-2012) another prevalencesurvey is foreseen.In addition, some groups, such as immigrants who come from countries where prevention is not in place, might suggest a newincrease in the prevalence of viral hepatitis, which is not entirely captured in the statistics.Vaccination against viral hepatitis B is free of charge in France; however 60 % of all teenagers are not vaccinated,which represents a serious threat for further viral hepatitis B infections in the future. The vaccination of newborns, however,is improving, from 20% being vaccinated in 1997 to 60 % receiving vaccination today.nTreatmentThe French national health system includes primary and secondary prevention and recently reviewed its viral hepatitis-specificaction, leading to the approval of the third National Plan for the fight against viral hepatitis B and C for the period 2009-2012.The plan recognises national shortcomings in prevention and screening, and establishes goal-oriented measures for the future.Treatment is accessible in France; however patients usually need a referral to a specialist from their general practitioner.A reimbursement scheme is also available for the patients; nonetheless, early diagnosis remains a challenge.39

Report on Hepatitis Patient Self-Help in EuropenTestingPatients can request to be tested for viral hepatitis and can get referred to a specialist by their general practitioner.Screening initiatives are included in the viral hepatitis-prevention programme. Patient groups endorse these and emphasisethat screening is most effective if carried out in a targeted way in high risk groups.PATIENT GROUPS IN FRANCESOS Hépatites FédérationnnnBackground informationThe SOS Hépatites Fédération was founded in 1996. The organisation is actively involved in awareness raising campaigns andalso participates in a number of studies, including information guides, statistics and reports on the viral hepatitis situation inFrance. The main aim of SOS Hépatites is to support and defend all those who suffer from viral hepatitis, no matter the type ofvirus or the way they were infected.Awareness raising campaignThe Federation promotes and carries out varied campaigns aimed at risk groups, the general public and healthcare professionals.It resorts to using all available instruments (internet, documents, studies, face to face meetings) and their campaigns includeinformation stands, email outreach efforts, meetings with experts and the use of media, including television. The federation issuccessful in attracting supporters from the general public, the media, healthcare professionals and some policy-makers.The use of scientific data as well as publications in specialised studies are important elements in their work. While interactionwith policy makers is not standardised, SOS Hépatites is in touch with relevant contacts at the political level and is interactingwith these on an ad-hoc basis. For 7 years, SOS Hépatites has been training general practitioners in the framework of a specialprogramme focusing on Therapeutic Education (more than 1200 general practitioners have been trained to date).Contribution and AchievementsOver the past years, SOS Hépatites has managed to achieve progress in a number of areas. Among others, the federationmanaged to be represented and make its voice heard in a number of forums including the “Conseil d’administration deshôpitaux”, the “Commission régionale de la santé”, the expert group “Haute autorité de santé”, the National Research Agencyfor HIV/Aids and Viral Hepatitis (Agence nationale de recherches sur le sida et les hépatites virales – ANRS), and the NationalHealth and Medical Research Institute (Institut national de la santé et de la recherche médicale – Inserm), as well as the“Collectif Inter Associatif sur la santé”, which is a strong lobby association composed of a number of different disease groupsThe Vice-President of SOS Hépatites is also the Vice-President of the national committee giving follow-up to the national planfor the fight against viral hepatitis B and C. The Federation has also asked the Minister of Health Roselyne Bachelot-Narquin topromote France’s “best practices” in the field of viral hepatitis at the European level. Another major achievement has also beenthe programme on therapeutic education of the patient by the HAS (Haute Autorité de Santé), which has been included in a law(loi Hôpital, Patients, Santé et Territoires - HPST) that provides a definition on therapeutic education.OPPORTUNITIES AND CHALLENGES AHEADOverall, the French system is at the forefront in the field of viral hepatitis prevention in Europe. The national plan for the fight againstviral hepatitis B and C includes primary as well as secondary prevention, which recognises the need for political initiatives in thisdisease area. Nonetheless, SOS Hépatites continues to face the challenge to fight viral hepatitis by detecting all those who areinfected whilst simultaneously providing support in their daily life. Furthermore, at the political level, it needs to be ensured that thedisease receives sufficient consideration and funding, given that other diseases like AIDS are considered an even greater healththreat by policy makers. While the national plan is an important milestone for progress in this field, adequate follow-up to the actionsoutlined in the plan needs to be given in practice.40

GermanyTHE SITUATION IN GERMANYnnnnEstimated prevalenceThe official numbers in Germany indicate that 400.000 - 500.000 people (0.5%) are infected with viral hepatitis B. The sameofficial numbers apply to the prevalence of viral hepatitis C. However, recent trials and screenings show that the prevalencemay be higher. A study carried out by Professor Berg (Charite 2009), estimates that 2.4% of the population is infected with thehepatitis C virus. Although the overall trend is considered to be stable the prevalence in the drug scene is on the rise.TrendsThe general public interest in viral hepatitis has been growing but there is still neither a national government-led strategy norviral hepatitis screening. Primary and secondary prevention are still inadequate to date. Vaccination is generally reimbursed forchildren and teenagers up to 18 years, and risk groups. Some insurance companies also reimburse ‘travel vaccinations’ foradults, especially on business trips; however there is a general trend of ‘vaccination tiredness’ in particular by parents inGermany. The government does not participate in any viral hepatitis awareness raising activity and there is no systematicscreening strategy in place. In addition, the vaccination rates for viral hepatitis B are extremely low among for instance diabeticsand other liver diseases.TreatmentAccess to treatment is adequate in Germany. Once the patient has been diagnosed, the appropriate treatment is available,and waiting times are usually very short (treatment can be made available after one or two weeks). The legal insurance GKV(Gesetzliche Krankenversicherung) in Germany ensures that reimbursement for treatment is available for everyone.TestingA patient can request a liver test or an antibody test for viral hepatitis B and C to be carried out but these are not included ina normal blood test nor are they included in the post-35 check-up.PATIENT GROUPS IN GERMANYDeutsche Leberhilfe e.V.nnnBackground informationThe Deutsche Leberhilfe e.V. has been established in 1987 and operates all over Germany. Its mission is to help liver patientsto help themselves. They encourage and support prevention as well as early diagnosis. In case of specific medical questions,the Deutsche Leberhilfe e.V. is assisted by specialised scientists and hepatologists.Main activitiesThe Deutsche Leberhilfe e.V. is the central information office for liver patients in Germany and offers counseling via the phone,e-mail and letters. Extensive information is being distributed to patients and relatives. In addition, their awareness raisingcampaign includes extensive activities involving seminars, expert meetings, face to face meetings with politicians, mediaoutreach and the use of studies as well as scientific data and cost effectiveness studies. In addition, the Deutsche Leberhilfee.v. closely cooperates with the German Liver Foundation (Deutsche Leberstiftung).Contribution and AchievementsLong-term relationships have been established over recent years not only with leading hepatologists but also with one of theformer health minister (who is their patroness) and various members of the German government including the Health Ministry.The greatest achievement to date is the establishment of a National Liver Day on 20 November every year as well as successfulactivities (e.g. free liver testing in over 25 cities) on World Hepatitis Day. The creation of special programmes for viral hepatitisB and C has been achieved. Their main challenge consists of a lack of funding and limited interest of the government in liverdiseases and viral hepatitis in particular.41

Report on Hepatitis Patient Self-Help in EuropeDeutsches Hepatitis C Forum e.V.(DHCF)nnnBackground informationThe DHCF was founded in 1997 and works exclusively with and for viral hepatitis C patients. Its mission is to raise awarenessof the disease through public information. Advisory services are offered across Germany. The DHCF does not have a fixed officebut bases its work on its online platform. Of the 13 volunteers, 7 are actively involved in providing counselling, working on theawareness raising campaign and running the information desk.Main activitiesThe DHCF is collaborating closely with the Deutsche Leberhilfe and Deutsche Leberstiftung. They do not have their ownsensibilisation/political campaign for viral hepatitis, however they work with the other two organisations on occasions such asthe World Hepatitis Day and the German Liver Day. The DHCF works directly with patients and provides counselling services.They have a close relationship with specialised doctors.Contribution and AchievementsThe DHCF assists up to 20 patients weekly and information on viral hepatitis C is widely made available. Personal and directinteraction has turned out to be a successful practice, for instance specialised talks are given at schools with a high proportionof drug users. One of their main achievements is for instance the inclusion of a viral hepatitis C (HCV) test in a centre for youngoffenders in addition to the HIV testing. Their book (‘Das DHC Handbuch’) has also been a main contributor to their income andto the dissemination of information.OPPORTUNITIES AND CHALLENGES AHEADThe main challenge to overcome in the future is the adoption of a national strategy against viral hepatitis in Germany. This includesthe implementation of a systematic screening programme. In addition, similar to the government’s HIV commitments, the variouspatient organisations advocate funds being made available for awareness raising and primary as well as secondary prevention.At the European level recommendations to be followed by Member States should be drawn up for primary and secondary prevention.ItalyTHE SITUATION IN ITALYnnnnEstimated prevalenceIn Italy the prevalence of viral hepatitis is about 1% for viral hepatitis B and 2.7% for viral hepatitis C. According to the officialnumbers, 230 000 suffer from cirrhosis originating from viral hepatitis C and 100.000 originating from viral hepatitis B.TrendsThe government has some positive new working measures with private partnerships, but still only vaccination for viral hepatitisB is mentioned in the healthcare programmes and there is no active identification process for occult Hepatitis, which could beacknowledged as a best practice. The prevalence trend seems to be declining, but around 20.000 patients die from liverdisease each year. There is no data on new infections per year including on the infections brought by migration flows.Specifically for viral hepatitis C, there is general unawareness about the real scale of new infections every year, as the notificationsystem is in place only for acute viral hepatitis.TreatmentTreatment for both viral hepatitis B and C is widely available in Italy and waiting time is generally not an issue. However, this ispartly due to the fact that proactive case finding is not a political priority in the healthcare sector.TestingTesting and primary prevention is generally poor, particularly for viral hepatitis C. A patient can only find if he/she has contractedviral hepatitis if he/she undergoes testing for other reasons e.g. prior to invasive surgery. Political willingness and drive to findand treat ill patients is still lacking.42

PATIENT GROUPS IN ITALYEPAC onlusnnnBackground informationThe EPAC onlus association was formed in 1999 with the aim to provide adequate counseling and information on viral hepatitisto those in need. Currently, it is located in Rome and Milan and has a counseling capacity of over 180 patients per week, eitherby phone, email or in person. Its work is highly recognized both in the public eye and with policy-makers and the organizationidentifies itself as the only trustworthy place that most patients can go to.Main activitiesEPAC’s awareness raising campaigns are frequent and varied, reaching out to all members of society through numerousinstruments, i.e. the internet, leaflets, newspapers and others. The association organises numerous campaigns throughout theyears reaching out and mainly directed at the general public and policy-makers. Its methods are varied and numerousinstruments are used in order to get the messages across in the most professional and effective manner.Contribution and AchievementsEPAC onlus frequently meets with policy-makers to reinforce its views and request support. However, there is not enoughfunding available; hence, the impact is not always as required. One of its achievements is the recent agreement that wasreached with the Ministry of Health to carry out a prevention study based on a survey. The study’s results will be released in2011. However, generally EPAC onlus struggles to include viral hepatitis treatment in its entirety (from primary to secondaryprevention) into the national health plan and to make sure that all of the country’s regions are able to provide the same andhighest standard level of treatment to patients.OPPORTUNITIES AND CHALLENGES AHEADThe most important current challenge is to include all hepatitis treatments into the national health plan and ensure that patientsinfected through blood transfusions are compensated and fully reimbursed. In addition, the inclusion of viral hepatitis screeningand prevention into the national healthcare system remains a key challenge. An important step and opportunity towards achievingthese goals is to promote greater coordination between stakeholders in Italy including institutions, the pharmaceutical industry,patient associations and scientific associations. At EU level unified screening guidelines should be drawn-up and resources shouldbe made available for research and trials of new drugs on high risk groups.PolandTHE SITUATION IN POLANDnnEstimated prevalenceViral hepatitis B and C prevalence in Poland is between 1.5% and 2%. There are an estimated 700 000 people infected,of which many are unaware of their condition.TrendsIn theory, prevalence should decrease as the sanitary conditions in the hospitals and medical centres improve. Doctors expecthowever that in view of the lack of regular screening, prevalence will increase – patients who are already infected but who arenot aware will start to have symptoms (which might occur even 25-30 years after their initial infection). The specialists claimthat all people who have undergone a medical procedure before 1991 should be tested for HBV/HCV.43

Report on Hepatitis Patient Self-Help in EuropennTreatmentViral hepatitis B and C are not high on the political agenda, the financial resources for the screening tests but also for thetherapy are therefore limited. This is coupled with the lack of awareness among general practitioners about the symptoms atthe early stage of the disease. Poland does not include primary or secondary prevention in its national health plan. Some of thetreatment that is provided for viral Hepatitis B is too old and not up to current standards. In addition it may take up to 3-5 yearsfor patients to start treatment on Interferon.TestingViral hepatitis tests are currently not included in the basic check-ups e.g. obligatory test for pre-employment. Although theinfrastructure is broadly in place, there are not enough financial resources to finance tests or treatments. The patient needs togo to a specialist to be prescribed a free-of-charge test; otherwise the patient needs to bear the costs privately.PATIENT GROUP IN POLANDThe Star of HopennBackground informationThe Star of Hope organisation was created in 2007 in Katowice, Poland. Its main goal is to help patients with liver diseasesregardless of the cause, provide them with counselling and, in a way, substituting official bodies in the task of identifyinginfected people. The Star of Hope cooperates with other organsiations including the Hepa-Help Association, Against the YellowRiver Current Foundation and the SOS-WZW Association.Main activitiesAwareness raising is one of the main activities of the Star of Hope. In addition to the 20 volunteers including doctors, whichassist in the promotion of the campaigns, the association partners with other specialised organisations and individual generalpractitioners in order to get the message across and receive feedback.Most of the campaigns are locally focused and consist of expert meetings, meetings with politicians, media outreach, informationstands in public places and free testing initiatives. The instruments used for the messaging vary from leaflets to newspapers,specialised journals and the most important arguments are found in scientific studies.nContribution and AchievementsThe most successful campaign that was carried out consisted of a screening campaign in the Silesia region. 5000 people weretested for viral hepatitis C which revealed an identification level of 1.5%. The campaign was widely picked up by media (national,regional including press, radio and TV programmes); in addition around 50 TV information spots appeared. Patients are stillturning to the association after this campaign and the media wants to continue reporting about the viral hepatitis danger.The Association is in contact with the decision makers at ministerial level once a year, usually in case of a concrete problem(e.g. the suspension of the financing for oncology patients due to the lack of adequate regulations). It maintains more regularcontacts with the local politicians. However, there is a general feeling that viral hepatitis is not on the priority list for the decisionmaker and the problem is widely underestimated.OPPORTUNITIES AND CHALLENGES AHEADAt the strategic level the main challenge in Poland is to convince the government and healthcare professionals of the seriousnessof the disease and to increase the political will. The Star of Hope believes that it would be important to reach out to more regionsin the country and to try to influence policy-makers at a broader level.Ensuring that the problem is high on the political agenda and that adequate financing is secured remains an important goal.In addition, the inclusion of primary and secondary prevention in the national health plan and the introduction of viral hepatitis testsinto basic check-ups e.g. the obligatory test for pre-employment, is important. Awareness-raising campaigns targeted at society atlarge as well as general practitioners will need to be further conducted and promoted.44

PortugalTHE SITUATION IN PORTUGALnnnnEstimated prevalenceIn Portugal the estimated prevalence of viral hepatitis C is 1.5% while about 1% suffers from viral hepatitis B. However, giventhe lack of official data, numbers are believed to be slightly higher than these figures, in addition to the new cases that also gounregistered.TrendsGiven that viral hepatitis B vaccination is obligatory for all newborns, the disease is not considered a major problem by thegovernment, although the majority of the population is not vaccinated. The main concerns in Portugal are risk-groups andimmigrants who live outside of the legal system and therefore do not receive access to the national health system.TreatmentTesting in Portugal is possible but not easily accessible. Usually, after being diagnosed, patients will need to face long queuesand significant waiting time if they require any further testing while direct access to treatment is slightly quicker. Another issuefaced by patients is discrimination by healthcare professionals (as they are associated with drug addicts, prostitutes, alcoholics)and, sometimes, negligent behaviour. Treatment is, nonetheless, free of charge.TestingA viral hepatitis check is only carried out upon request of the patient or if the patient is considered to be part of a risk group.In SOS Hepatitis view, the largest groups at risk are ex-combatants from the overseas war (Angola, Mozambique, Guinea ...),women who became mothers, women who have abortions, any person who was operated before the year 1992, or has receiveda blood transfusions before 1992. Today these people are 50/60 years old, many have been infected for many years and mostare pre-cirrhotic without knowing it.PATIENT GROUPS IN PORTUGALSOS Hepatitis Support GroupnnnBackground informationThe SOS Hepatitis Support Group was founded in 2005 and is now represented in 7 different cities and is entirely run byvolunteers. Its objective is to provide counseling and clarification to patients of practically all liver conditions, as well as thepromotion of awareness to the general public and health professionals as well as providing input to official studies.The association suffers from a great lack of funding (mostly private/public donations) and public support justified by the lowstatus of viral hepatitis in Portugal and its taboo-like image.Main activitiesAwareness-raising campaigns are not the main activity of SOS Hepatitis due to lack of funding and time. Essentially, the focusis on expert and face to face meetings as well as seminars. With these actions the volunteers aim to gather policy-makers andhealthcare professionals support, in addition to the general public’s attention. However, the best reception of the informationexperienced to date has actually come from school children who are far more open to the topic (children actively participate inopen sessions and explain these experiences to their parents).Contribution and AchievementsSOS Hepatitis has a considerable number of celebrity public supporters ranging from footballers to rock musicians and Membersof the European Parliament (MEPs) including for instance the former MEP, Fausto Correia, S&D. Furthermore, on the WorldHepatitis Day and on other significant occasions they take the opportunity to organise public actions, such as distributingcondoms to help prevention. Their greatest achievement was the organisation of an awareness raising seminar at the UniversityHospital of Coimbra, which had the participation of over 150 healthcare professionals and students.45

Report on Hepatitis Patient Self-Help in EuropeOPPORTUNITIES AND CHALLENGES AHEADThe main challenge for SOS Hepatitis is to improve public opinion and demystify the taboo around viral hepatitis. In Portugal,the main obstacle to policy development is the perception of the illness and the lack of knowledge which surrounds it. A change inperception would assist both the national healthcare system to work better and the association to receive more funding.RomaniaTHE SITUATION IN ROMANIAnnnnEstimated prevalenceIn Romania the prevalence of viral hepatitis B and C together is around 10% representing over 2 million people with a tendencyto rise.TrendsIn spite of the increasing tendency of viral hepatitis prevalence, treatment and vaccination for viral hepatitis and even livercirrhosis are not included in the national healthcare systems.TreatmentViral hepatitis is currently not included in the national health programmes nor in its vaccination or medical reimbursementsystem, hence the high cost especially for patients that are under interferon therapy. Viral hepatitis is considered a chronicdisease but is not part of national programmes which would provide for larger subsidies, as well as easier access to treatment.(Cirrhosis might be included in a national programme in the future.) Waiting time for treatment can amount to 1 year. In addition,treatment is often linked to age instead of to the extent to which the liver is affected.TestingViral hepatitis tests are not included in general set of tests.PATIENT GROUPS IN ROMANIASANOHEP RomaniannBackground informationSANOHEP Romania was founded in 2001 with the overall goal to educate people on viral hepatitis and promote informedbehaviour. Their added value is the facilitation to patients of psychological counseling and the possibility of free testing but alsotheir soft approach to both awareness campaigns and policy-making. Their current specific goal is to identify and screen targetgroups under risk and to include viral hepatitis in general check-up tests.Main activitiesThe organisation promotes numerous awareness raising campaigns which are directed mainly at policy-makers and risk groups,although accessible to the whole population. SANOHEP conducts the campaigns essentially through seminars, roundtables,expert meetings or free test initiatives, depending on the specific objective. Moreover, they also organise media outreachcampaigns in order to promote public support for tackling the disease.The main means used to pass on the message are the internet, leaflets and television in what concerns general awarenesscampaigns. Whereas, the best mechanisms found for a more in-depth approach are face to face meetings with specialists andpolitical declarations with some kind of effective consequence.46

nContribution and AchievementsThe most recent campaign targeted school children and teenagers from 9 pilot counties in Romania. It was the first suchinitiative targeting children. The objective was to provide them with information on viral hepatitis A (especially for primary schoolchildren, who were asked to show the leaflets we distributed to their parents), viral hepatitis B and C (for 5-8 and 9-12 of age).They were invited to informal debates conducted by the volunteers. Very good feedback was received especially from teachersand the media coverage was also very good.SANOHEP has built a long-standing partnership with the Ministry of Health and obtained observer status in some of the localand national committees responsible for the decisions on treatment availability and policy development. They also partnerwith individual general practitioners and other horizontal patients associations demonstrating that there is a network in place,in Romania, to deal with the challenges of viral hepatitis and work on public awareness.OPPORTUNITIES AND CHALLENGES AHEADSANOHEP’s main challenge is to try and include viral hepatitis in the general set of tests provided by the Government and helpidentifying target groups under risk. In addition, free treatment and the inclusion of primary and secondary prevention into thenational healthcare system are being pursued. Awareness raising and increasing the knowledge of prevention mechanism close tothe risk groups remain top priorities for SANOHEP. Another challenge to overcome is that a patient’s age should no longer be acriterion for the initiation of treatment.SlovakiaTHE SITUATION IN SLOVAKIAnnnnEstimated prevalenceThere is an estimated prevalence of viral hepatitis B as well as C is of 1% but the lack of official data makes it rather difficultto assess the real situation.TrendsAs there is no official data on viral hepatitis prevalence it is equally hard to determine whether or not the number of infectedpeople is rising or decreasing. In any case, reports from the European Monitoring Centre for Drugs and Drug Addiction (EMCDDA)state that amongst drug users the situation is stable, although high, and government measures are relatively effective.TreatmentWhilst primary prevention programmes are inadequate, reimbursement, waiting time, and the availability of treatment seem tobe adequate both at the political and the operational levels.TestingTesting has been available free of charge since 2009 in most of the general practitioners practices. All patients may request itbut it is not yet part of the general blood test.PATIENT GROUPS IN SLOVAKIAHEP HELP KLUBnBackground informationHEP HELP KLUB was formed in 2006 with the objective of increasing expert knowledge in the area of medicine and publichealth with an emphasis on viral hepatitis C and other diseases of the liver. The association is supported by 5 volunteers whoensure partnerships with individual and collective associations of medical doctors as well as to ensure the counseling of around5 patients per week.47

Report on Hepatitis Patient Self-Help in EuropennMain activitiesThe HEP HELP KLUB frequently organises all types of awareness raising events from expert meetings to seminars and freetesting initiatives. As a small organisation it does very well in terms of diversifying messaging instruments and frequently usesthe internet, email, TV, newspapers and others to transmit its message.Contribution and AchievementsHEP HELP KLUB’s greatest achievement to date is the significant shift in public opinion and perception of viral hepatitis B and C.This was achieved through the numerous awareness raising campaigns that were organised and an effort to contact policymakersby means of written communication. Through their activities more information could be disseminated to the generalpublic, achieving greater awareness of the disease.OPPORTUNITIES AND CHALLENGES AHEADViral hepatitis is not a particularly neglected disease in Slovakia, however there is still a lack of general public awareness.Hence, the association’s main opportunity is to increase knowledge of the disease in the area of public health. Furthermore, the associationis aiming to include viral hepatitis in routine blood screenings and try to better educate the Slovak healthcare staff.SpainTHE SITUATION IN SPAINnnnnEstimated prevalenceIn Spain, 3% of the population suffers from viral hepatitis C and another 3% is believed to be infected without knowing it.Less data is available on the prevalence of viral hepatitis B infections but it is estimated that about 1.5-2% of the populationsuffers from viral hepatitis B.TrendsGiven that viral hepatitis B vaccination is available free of charge and is even obligatory for all newborns, the disease is notconsidered a major problem by the government. However, taking into account the higher prevalence among migrants,the patient groups in Spain ascertain that viral hepatitis B remains a major risk to public health. In addition, viral hepatitis ishighly stigmatized in Spain and the psychological aspect is often neglected. Hepatology teams of main hospitals in collaborationwith patient groups are starting to offer training and awareness activities to general practitioners and nurses so that patientscan be diagnosed at an earlier stage.TreatmentOnce diagnosed, the viral hepatitis patient has access to the appropriate treatment and to hepatologists. The main problemhowever remains early diagnosis as no systematic public screening is carried out and there is generally a lack of knowledgeof the disease. In addition, General Practitioners, who are a patient’s first point of contact, are often not adequately educatedin this field to diagnose the disease in a timely manner.TestingA viral hepatitis check is only carried out upon request of the patient, it is thus not included in a normal blood test for instance.In particular, people with tattoos or people who received blood transfusions before the 1990s as well as the immigrant population(e.g. from China, Romania and South America) are major risk groups.48

PATIENT GROUPS IN SPAINAsoEEHC “Asociación Española de Enfermos de Hepatitis C”nnnBackground informationAsoEEEHC is the Spanish patient association operating at the national level since 1998. Its mission is to lead on defending thecollective and individual interests of viral hepatitis C patients. AsoEEHC works with professionals, psychologists, lawyers andsocial workers.Main ActivitiesIn the context of its awareness raising campaign, AsoEEHC is involved in a wide range of activities including seminars,roundtables, meetings with politicians, and trainings of general practitioners, media outreach and information stands. In addition,given the stigmatisation of viral hepatitis strong focus is placed on the psychological dimension of the disease.Contribution and AchievementsOver the years AsoEEHC has established long term relationships with policy makers as well as with the media. With the Ministryfor Health AsoEEHC has for instance organised ‘work tables’ to address the topic of viral hepatitis and to present concretecases. Policy makers at national level have been receptive to AsoEEHC activities, and have supported the organisation inelaborating practical guides on viral hepatitis C for general practitioners, by participating in days dedicated to patients and theirfamilies as well as speaking on co-infection in penitentiaries. AsoEEHC collaborates well with policy makers, however owninitiativesby the government are rare. In April 2010, AsoEEHC submitted a request for viral hepatitis C screening in risk groupsto the health department, which is currently under review. Their main success to date is the positive impact of the World Hepatitisday, the right to a second opinion by the patient and their active participation in studies.In November 2010, AsoEEHC will be carrying out a study on the realisation of screening among the risk group population incollaboration with the Health Department of the Region of Valencia and with the support of the counsellor for public health.The study will be presented by the regional ministry of Valencia to general practitioners as well as to patients, their families andthe general public.ASSCAT “Associació Catalana de Malalts d’Hepatitis”nnnBackground informationASSCAT was founded in the year 2000 and is the Association for Hepatitis Patients in the autonomous region of Catalonia.Its mission is to help the patients and their families from the moment of diagnosis by informing on all aspects of viral hepatitis.Their added value to other establishment such as the Primary Care Centres (the patient’s first point of contact) is their ‘patientto patient’ approach. Their experience as patients contributes to providing practical and emotional support.Main activitiesASSCAT’s awareness raising campaign is mainly directed at healthcare professionals, the general public and risk groups suchas drug addicts. To this end, expert meetings and information days are organised for health personnel, the general public,academics and the immigrant population.Contribution and AchievementsThe results of these efforts are however limited to some extent due to a lack of resources and a lack of support by the Cataloniangovernment, which does not consider viral hepatitis as a priority issue. Over the years ASSCAT managed to build strong linkswith hepatologists who support their campaign with their professional expertise e.g. training seminars for General Practitioners.Media coverage is highly dependent on the nature of the news and whether there is a major development. Despite theseconstraints, ASSCAT nonetheless secured two meetings with the Health Department and ensured that they committed todistributing information leaflets on viral hepatitis to all Primary Care Centres in 2011.49

Report on Hepatitis Patient Self-Help in EuropeOPPORTUNITIES AND CHALLENGES AHEADWhilst funding commitments for viral hepatitis treatment are available and adequate in Spain, no resources are devoted to the earlydetection of the disease, e.g. there is no screening programme in place. Viral hepatitis is not included in the government healthprogramme nor is there a specific prevention campaign.The challenges for these organisations include achieving greater visibility and sufficient information on viral hepatitis. This includesextensive information campaigns by the public administrations and adequate training of general practitioners. A public screeningplan for viral hepatitis C risk groups represents a major challenge and is actively pursued. In support of these efforts, access andproduction of more data in Spain but also across Europe would significantly contribute to achieving these goals.SwedenTHE SITUATION IN SWEDENnnnnEstimated prevalenceIn Sweden there is an estimated prevalence of viral hepatitis C of around 0.5% and most cases (90%) are identified in drug users.TrendsOverall, the trend is for the virus to decrease in terms of the general population but not necessarily amongst the most affectedrisk groups due to the lack of government support to prevention.TreatmentTreatment is available in hospitals and follows the normal healthcare provisions of the Swedish State. This means that if thepatient is identified as a risk group, treatment will be free and if this is not the case the normal health insurance schemes applies.TestingVaccination of new born children is not a main priority in Sweden. It is not included in the national health system scheme andis one of the biggest issues for the patient groups. Testing is only possible on request and through the payment of a fee.PATIENT GROUPS IN SWEDENRiksföreningen Hepatit C (RHC)nnnBackground informationThe National Union of Hepatitis C (RHC) is a small patient association which works mainly on raising awareness, minimizing thespread of the disease and supporting a small number of patients (around 5 per week) suffering from viral hepatitis C infection.Its dependence on 5 volunteers does not allow them to organize many campaigns or public actions beyond the WorldHepatitis Day.Awareness raising campaignAs a small association the RHC does not have the ability to coordinate many awareness raising campaigns so its membersprefer to put together face to face meetings between patients and specialists or engage in the dissemination of relevant studiesand data through the use of the internet and email.Contribution and AchievementsThe World Hepatitis Day is the yearly campaign where the association gathers most of its funding and it is usually the biggestpublic activity they organise. In terms of achievement, the association is happy with the degree of information disseminatedthrough leaflets and flyers in markets and other public locations.Its most important contribution is the support they provide to those infected and to their families (as they are the only association)but also the dialogue it tries to establish with health care and decision-makers.50

OPPORTUNITIES AND CHALLENGES AHEADAs the organisation mainly focuses on viral hepatitis C, the work of the association concentrates on risk groups. Hence, the mainchallenge of RHC is to raise awareness and influence public policy to create better conditions for those within the risk groupssuffering from viral hepatitis.The main challenge is to educate healthcare professionals to ensure the necessary awareness of viral hepatitis and promote theimportance of primary prevention. In fact, the support of healthcare professionals is a significant factor in their awareness raisingcampaign and in order to receive policy-makers attention. Dialogue with policy-makers is another challenging task for RHC as thereis very little political will to support the viral hepatitis C cause in Sweden.The NetherlandsTHE SITUATION IN THE NETHERLANDSnnnnEstimated prevalenceIn the Netherlands the prevalence for both chronic viral hepatitis B and C is about 0.1% to 0.3%. The prevalence of viralhepatitis B is higher among certain risk groups including immigrants from endemic areas and (former) drug users. In theNetherlands there is less data on the prevalence of viral hepatitis C; the risk groups are among others (former) drug users andpeople who had a blood transfusion or received other blood products (haemophiliacs) before 1991.TrendsAlthough no national screening strategy is in place, screening of targeted groups receives more attention. Since 1998 pregnantwomen are for instance tested for viral hepatitis B. In addition, since 2003 newborns are vaccinated if one of the parents comesfrom a medium or high endemic area. Prostitutes and homosexual men with multiple sexual partners can also be vaccinatedfor free.TreatmentOnce diagnosed, treatment is available and the costs are covered by the basic health insurance package.TestingViral hepatitis tests are not included in any general check-up.PATIENT GROUPS IN THE NETHERLANDSNationaal Hepatitis Centrum (NHC)nnBackground informationThe Nationaal Hepatitis Centrum (NHC) in the Netherlands was founded in 1995 to take up a central place in and to contributeto the social and societal aspects of viral hepatitis. As an independent organisation NHC works together with doctors and otherpatient organizations to raise awareness and to be a general helpdesk for people dealing with viral Hepatitis and other liverdiseases, both from a professional or private angle. The NHC advises between 10 and 20 patients per week, but also healthcare workers, physicians and other professionals are advised on viral hepatitis.Main activitiesThe NHC organises very broad campaigns to raise awareness on liver diseases and viral hepatitis. The campaigns are directedtowards a number of target groups including policy makers, insurance companies, healthcare professionals, risk groups,and the general public. A variety of communication channels combined with a broad range of activities like seminars, mediaoutreach, information stands and free testing is being used. This is supported by specialised studies, scientific data, crosscountrycomparison and meetings with specialists.51

Report on Hepatitis Patient Self-Help in EuropeTo reach as many people as possible, the NHC is working together with a variety of stakeholders such as the Associations ofGeneral Practitioners (e.g. Nederlands Huisartsen Genootschap), horizontal patient associations (e.g. Nationaal Instituut voorGezondheidsbevordering en Ziektepreventie) and specialised organizations (e.g. Nederlandse Leverpatienten Vereniging).nContribution and AchievementsTheir greatest achievement of the NHC is the significant media attention they obtained on the occasion of the World HepatitisDay. More than 150 websites published their press release and there were also interviews in the radio and television.'Universal vaccination will be implemented in the Dutch Childrens' vaccination programme in 2011, an achievement of manyprofessionals and organisations working in the field of viral hepatitis, including the NHC.'Generally the NHC faces the obstaclethat there is a lack of interest among policy makers and healthcare professionals.OPPORTUNITIES AND CHALLENGES AHEAD'The NHC is vigorously pursuing screening for viral hepatitis in several risk groups. In addition, the development of a hepatitismonitoring system is needed. The NHC will continue to raise awareness of the seriousness of viral hepatitis among the generalpublic, healthcare professionals and politicians. Furthermore, increased media coverage of viral hepatitis is being further pursued.United KingdomTHE SITUATION IN THE UNITED KINGDOMnnnEstimated prevalenceThe prevalence of viral hepatitis C in the United Kingdom (UK) is 0.5% to 1%. Government figures for viral hepatitis B suggestthe prevalence is 0.3% (about 180 000) but independent estimates put it at twice that figure.TrendsPrevalence is believed to be on the rise. There is still no universal vaccination for viral hepatitis B in place and there is nosystematic screening strategy in the UK. Data is relatively poor as there is no prevalence study being carried out, except amongstinjecting drug users.In addition, National Health Service provision varies throughout the UK which complicates the access totreatment and patients’ rights in general.TreatmentAccess to treatment and reimbursement is generally not an issue. However on occasions retreatment can be problematic andin some areas specialists are not spread evenly. Hepatitis care for drug users and prisoners is also rather poor.Waiting times have generally become much better. They are more of a problem in those areas where diagnosis through theimplementation of testing programmes has improved.Vaccination for viral hepatitis B ranks from being free for certain risk groups listed in the so called ‘green book’ to £200 insome places.nTestingPrimary prevention and case findings are generally poor. Especially among drug users, not even testing targets are met.52

PATIENT GROUPS IN THE UNITED KINGDOMThe Hepatitis C TrustnnBackground informationThe Hepatitis C Trust was founded in 2001 and has offices in London, Coventry and Edinburgh. They work with 16 full timeemployees and 60 volunteers across the country. Patients are generally informed about The Hepatitis C Trust’s existence at thetime of hospital referral. Their mission is to provide information and support people with viral hepatitis C, as well as raisingawareness and preventing unnecessary deaths.Main activitiesApart from counselling, The Hepatitis C Trust leads awareness campaigns directed at risk groups, healthcare professionals,policymakers and the general public. For these campaigns it makes increasingly use of new media such as facebook andtwitter, but also produces patient testimonials for radio stations which are broadcasted every 3 months.The Trust has established partnerships with both specialist (e.g. the British Association for the Study of the Liver) and generalpractitioner associations (e.g. Royal College of General Practitioners). With the latter, they are developing an online learningtool on viral hepatitis C for general practitioners.Furthermore, the Trust runs the secretariat for the all-party hepatology group in Parliament and works closely, at regulatorylevel, with the National Institute of Clinical Excellence (NICE), whom it has recently advised on access to antivirals for drug users.Finally, the different health systems in England, Scotland and Wales have proved to be helpful. The Scottish hepatitis C strategy,triggered by the Royal College of Physicians consensus conference in 2004, led the way for greater efforts in England and Wales.nContribution and AchievementsAt policy level, the Trust conducted an award-winning campaign for a national liver strategy which was then kicked off by theDepartment of Health in October 2010. Its chief executive Charles Gore is now co-chair of one of the workstreams and sits onthe liver strategy’s steering group.Furthermore, thanks to the help of VIP patient Dame Anita Roddick, the Hepatitis C trust managed to raise the profile of HepatitisC significantly in the UK media and has managed to maintain this level, despite Dame Anita’s tragic death in October 2007.British Liver TrustnnBackground informationThe British Liver Trust was founded in 1988 and is the only liver charity for adults in the country. Their mission is to help adultswith liver disease and to prevent liver disease. Its objectives include advancing education and awareness among the public,patients and health professionals, endorsing health education and promoting medical as well as scientific research relating todiseases and disorders of the liver.Main activitiesThe campaigns of the British Liver Trust are far reaching and include interaction with policy-makers and healthcare professionals,the general public and risk groups. A number of seminars, expert meetings and information stands are organised regularly.In addition, media outreach is an important tool used as along with the internet, leaflets, newspapers and other sources ofinformation such as scientific studies and cross-country comparisons. Generally there is a good reception of the campaignsconcerning liver disease, but both the media and the public opinion are not too favourable to “self inflicted” case studies i.e.former drug users. A regular relationship has been built with about 10 people from the Department of Health.53

Report on Hepatitis Patient Self-Help in EuropenContribution and AchievementsAmongst its main achievements is the recent pharmacy testing event in Blackpool (an area with the highest rates of mortalitydue to chronic liver disease in England) and identified 64% of those tested as having HCV. The British Liver Trust’s greatestproblem is however the considerate lack of attention from policy makers, healthcare professionals and the media. The FaCecampaign for Hepatitis C in the UK is led by the Health Department, however it is on hold since the elections in the UK.Nonetheless, they have recently achieved a commitment from the Government for a National Liver Strategy and the Governmenthas appointed a Liver Tsar (Dr. Martin Lombard) to formulate it. In this process statistics and scientific evidence that liver is theonly disease among the ‘big killers’ that is on the rise have proven key. The strategy will encompass efficiency ideas and willhave a clinical focus rather than on spending or promoting public awareness.nOpportunities and challenges aheadThe British Liver Trust’s main goal is the implementation of the national liver strategy. The lack of education on viral hepatitis Camongst healthcare professionals is the biggest challenge in the Hepatitis C Trust’s endeavour to improve case finding.While there are examples of good practice at local level, it is rather challenging to make them known more widely, so they canbe emulated. The cooperation with the Royal College of General Practitioners and the special interest group of generalpractitioners for drug addiction are opportunities in this context.Another challenge is the lack of both scientific and health economic data, as well as the nature of the disease itself,which people find hard to relate to.The British Liver Trust’s also aims at ensuring that the implementation of universal vaccination for viral hepatitis B,which includes the need for better prevalence figures. In the context of the National Liver Strategy, they want to ensure thatthe newly appointed “liver tsar” becomes an efficient post and starts to change the current situation at a national level.The overarching challenges remain to be the identification of all those suffering from liver disease and create joined upprogrammes aimed at risk groups to ensure appropriate care. Better case finding initiatives with a commitment to treatingpeople upon idenfication are being pursued as well as increasing the knowledge in the healthcare community of liver diseases.54

Annex II: Patient self-help surveySection 1: About the organizationn1. Name of the patient self-help group/organization?n2. What country are you based in?n3. When was your group/organization founded?n4. What is your mission?n5. What are your main activities?a. Counselingb. Awareness raising campaignc. Participation in studiesd. Other:n6. How many patients do you advise per week?a. Up to 5b. Between 5 and 10c. Between 10 and 20d. More than 20 (please specify)n7. Why do they come to you? Do they have other places to go to?a. We are the only place they can go tob. We are complementing other placesIf you answered option b) Please give details about where else patients go to and what your added value is:55

Report on Hepatitis Patient Self-Help in Europen8. Please rank in order of importance the liver diseases you are dealing with:n Viral Hepatitis An Viral Hepatitis Bn Viral Hepatitis Cn Hepatitis due to alcohol consumptionn Non-alcoholic fatty liver diseasen Liver cirrhosisn Liver Cancern Haemochromatosisn Othern9. Do you work with volunteers and/or employees?a. Yes – Please indicate the number:Employees:Volunteers:b. Non10. How do you finance yourself? Please provide estimated percentages.a. Private %b. Donations/general public %c. Pharmaceutical industry %d. Industry other than pharmaceutical companies %e. Public sector/government funding %f. Other: %Section 2: Liver awareness raising campaignn11. Do you organize campaigns to raise awareness of liver diseases and/or hepatitis?a. Yesb. NoIf yes, please proceed to question 12.If not, please explain the reasons e.g. no need, not the focus, no resources:n12. At whom is your awareness raising campaign directed?a. Policy makersb. Insurance companiesc. Healthcare professionalsd. General publice. Risk groups (e.g. drug addicts)f. Other:56

n13. Are you satisfied with the result?a. Yesb. More or lessc. NoPlease explain:n14. Do you have a long term relationship with policy makers or other stakeholders, e.g. VIP patient or supporter?a. Yesb. NoIf yes, please specify. If no, what are the reasons?n15. What are the main activities you carry out to promote awareness of hepatitis?a. Seminars/roundtablesb. Expert meetingsc. Meetings with politiciansd. Media outreache. Information stands in public placesf. Free testingg. Other:n16. What channels do you use to raise awareness of hepatitis?a. Internetb. E-mail/lettersc. Leafletsd. Newspaperse. Specialised journalsf. Life Style magazinesg. Televisionh. Other:n17. What main tools and arguments do you use to raise awareness of hepatitis?a. Specialised studiesb. Scientific data (e.g. graphs, tables)c. Cross-country comparisonsd. Face to face meetings including specialistse. Political statements e.g. European Parliament Written declarationf. Other:57

Report on Hepatitis Patient Self-Help in Europen18. Do you partner with any other stakeholders? (please specify)a. Specialised organizationsb. Individual General Practitionersc. Associations of General Practitionersd. Horizontal patient associationse. VIP patient or supporter?f. Other:Section 3: Evaluationn19. What is the estimated hepatitis prevalence in your country; is there a general rising or declining trend?n20. Is hepatitis primary and/or secondary prevention included in the public health care programmes/policies of yourcountry?a. Yes, primary and secondary preventionb. Only primary preventionc. Only secondary preventiond. NeitherPlease specify:n21. Please specify how you would rate the attention that is given to hepatitis at political and operational level?Political will/initiative/supportOperational set-upCriteria (adequate/inadequate) (adequate/inadequate)a. Reimbursement availabilityb. Primary preventionc. Secondary preventiond. Access to treatmente. Waiting timef. Other:n22. What are your observations about how your current national health system classifies and targets hepatitis, is ita case for best practice?58

n23. How often do you meet with policy makers?a. 1 time per yearb. 2 times per yearc. 4 times per yeard. 8 times per yeare. Other:n24. Do you pursue a specific goal? e.g. political statement, refunding of hepatitis testing by insurance companies,inclusion of hepatitis in a general check-up test, risk-group specific screening etc.a. Yesb. NoIf yes, please give details:n25. What is your greatest achievement in the field of hepatitis awareness rising to date?n26. What is your greatest challenge to date?n27. What are the main problems you encounter in your awareness raising campaign:a. Lack of interest from policy makersb. Lack of scientific datac. Lack of education of healthcare professionalsd. Lack of media attentione. Other:n28. How does the World Hepatitis Day contribute to your activities?n29. How does political attention and funding commitments on hepatitis fare compare to other diseases such as HIV,tuberculosis or cancer? Do other diseases have more awareness? If so why?n31. In your view, what should sustainable policy making in your country in the field of hepatitis awareness entail?How could the situation be improved and by whom?n31. What activities/results would you like to see at the European level to support your national activities?59

Migration, Hepatitis B and Hepatitis CManuel Carballo, Rowan Cody, Edward O’Reilly, Anna Paola de FeliciInternational Centre for Migration, Health and Development61

Migration, Hepatitis B and Hepatitis CPrefaceViral hepatitis constitutes a global problem that has been neglected by national and international health policy makers alike.Today, despite the fact that it has become one of the most important burdens of disease, few countries have seen fit to take it upin the way it deserves from either a preventative or a treatment point of view. Viral hepatitis is nevertheless not uniformly distributedthroughout the world and some regions and people are far more affected than others.In a world in which human mobility is becoming easier and in which more people are already moving faster and further than everbefore in history, the role played by migration in the spread of viral hepatitis merits special consideration and calls for policy andpractice initiatives designed to respond to the emerging needs of countries and people.This brief overview of the scope and magnitude of contemporary migration and its implications for hepatitis B and C has beenprepared as a background paper for the Hepatitis B and C Summit Conference in Brussels, 14 and 15 October 2010.62

IntroductionHepatitis B (HBV) and hepatitis C (HCV) have become two of the main causes worldwide of liver disease and Hepatocellular Carcinoma(Perz, Armstrong, Farrington, Hutin, & Bell, 2006; CDC, 2010), and as such have become major and possibly growing threats toglobal health. In terms of the number of people affected and the burden it represents for them, their families and the health caresystems of the countries they live in, HBV and HCV are two of the world’s most urgent challenges (CDC 2010). Relative to othercommunicable and non-communicable diseases, viral hepatitis has nevertheless remained neglected from both a policy and aprogram point of view in most countries of the EU region.Not a new problemViral hepatitis is not by any means a new disease. As early as the 8th century Hippocrates had already proposed that it might betransmissible from person to person. By the latter part of the 19th century, a series of periodic outbreaks of jaundice had furtherconvinced health scientists that it was viral and could spread through contaminated blood and skin piercing instruments, amongother methods. By 1947, characterization of hepatitis into its A and B forms, the definition of hepatitis B surface antigen’s (HBsAg)some twenty years later, had provided a solid basis to understanding the nature of hepatitis and its different transmission routes.Distribution of the problem and migrationJust as with most other major infectious diseases, the global distribution of viral hepatitis varies significantly between countries andbetween regions of the world. Similarly, not all people have an equal risk of exposure to either HBV or HCV. There is neverthelessevidence that viral hepatitis is spreading and becoming a more global threat than previously. Among the many factors contributing tothe changing epidemiology of viral hepatitis, the movement of people within and between countries is a potentially important one.Migration in the EUMigration into and between the countries that make up the European Union (EU) has always been a way in which people andcountries have coped with difficult conditions. At times of economic and political instability, people have tended to move within andespecially out of their region of origin in search of a safe haven and a better life. Over the last two decades, the overall directionand pace of migration has changed, however, and for the first time in recorded history the EU region has become more of a receiverthan an exporter of people. The range of countries sending people to the EU has also grown to include not only a wider spectrumof people and socio-cultural backgrounds, but diseases as well.Migration and disease Migration and diseaseIn today’s context of rapid global migration, there is a potential for any disease to be moved further and faster than was previouslypossible. These implications concerning the movement of HBV and HCV merit far more attention by countries and the internationalcommunity than they have given the problem to date. This is especially important given that the scope and speed of migration isexpected to grow in coming years.63

A Silent and Neglected DiseaseDespite the fact that viral hepatitis has become a global public health threat, both HBV and HCV have remained neglected relativeto the attention given to HIV and other diseases. Some of the reasons for this may include:Clinical problems of diagnosis and reportingBoth HBV and HCV can be asymptomatic and progression to a life threatening status can be slow (Rantala & van de Laar, 2008).Today, as many as 40% of the individuals infected with HCV in Europe are thought to be unaware of their infection, and in Poland(and probably other countries), where the prevalence of HBV is thought to be high, as many as 90% of those affected by it areestimated to be unaware of their condition (Merkinaite et al., 2008). Difficulties in diagnosing HCV in the liver (about half of thosewho are infected do not manifest elevated ALT activity) may also have limited public attention to the problem.Lack of surveillance standardsThe fact that there are still no global surveillance and reporting system standards continues to be a factor in the lack of awarenessabout and attention to viral hepatitis (Rantala & van de Laar, 2008). Different countries and regions often use different parametersof measurement and there has not yet been any major attempt to develop national or international registries.StigmaStigma has been a major obstacle to the surveillance and reporting as well as early diagnosis and treatment of sexually transmitteddiseases in general, and while it is not clear to what extent this has been the case with viral hepatitis, it may have contributed tothe lack of openness surrounding it. In the case of people arriving from different cultural backgrounds this remains a potentiallyimportant theme.Viral hepatitis and migrationAlthough the implications of migration for the spread of infectious diseases have attracted considerable attention, interest in thisarea has thus far tended to focus primarily on TB, and more recently, HIV. There has been relatively little interest in viral hepatitisin the context of human mobility despite the fact that it is more infectious and is today responsible for greater morbidity and mortality.64

Magnitude of Viral Hepatitis ProblemGiven the nature and pace of contemporary migration there is a growing capacity for viral hepatitis to be moved rapidly by people,or acquired by them, as they go from one part of the world to another.Estimated size of viral hepatitis problemWHO estimates that about 2 billion people are living with viral hepatitis, and that around 350 million have a chronic form of thedisease. Given the tendency for it to be under-diagnosed and under-reported, however, the true figure may be much higher.About 4.5 million people around the world are newly infected with HBV and/or HCV every year, and between 1-10% of adults and30-90% of infected babies, become carriers, who are likely to develop serious liver diseases (Zanetti, Van Damme, & Shouval,2008) that account for around 620,000 deaths each year (Zanetti et al., 2008). In the case of HCV, about 85% of those infectedalso become chronic carriers (Merkinaite et al., 2008) and between 15-25% of them go on to develop to life-threatening liverdisease in the 30 or so years following infection (Mühlberger et al., 2009).Infective nature of the virusCompared to HIV, a disease that has caught the imagination of both the public and health planners and has inspired globalinterventions, HBV and HCV, which are essentially transmitted in the same way, are estimated to be 100 and 10 times moreinfectious respectively (Merkinaite et al., 2008). The virus, moreover, is far more resilient than HIV and remains highly potent indried blood or other body secretions outside the body at room temperature for much longer than HIV (Hollinger, et al., 2001,Robinson, 1995, Alter, 2006).Routes of transmissionViral hepatitis is transmitted in the same way everywhere, but the strength of these modes varies considerably. In the countriesthat have medium to high HBV endemicity, the most common routes of transmission are mother-to-child at birth, percutaneous orvia other contact with infected blood and body fluids, or sexual intercourse (Ganem 2001, Gitlin, 1997, Hollinger et al., 2001,Mahoney et al., 1999). HBV transmission in low endemicity countries is especially associated with injecting drug use (IDU), sexualcontact and practices such as body piercing using unsterile equipment. In the case of countries with high to intermediate HCVendemicity, infection is most frequently associated with unclean injecting practices by injecting drug users and to a lesser extent,by health care providers (Alter, 2006). Thus in western European countries where transmission of HCV through contaminated bloodhas been significantly reduced, the prevalence of HCV among injecting drug users has been estimated to range from 15% to 90%(Rantala & van de Laar, 2008; Mühlberger et al., 2009).65

European MigrationMigration as always been an integral part ofEuropean development and most of what arenow EU countries have historically benefittedfrom a mix of both out-and in-migration. In thelate 19th and early 20th centuries when mostEuropean countries were still plagued bychronic unemployment and frequent conflicts,migration became an important safety valveand over 70 million people left Europe for NewWorld countries such as the USA, Canada,Australia, Brazil and Argentina. Today the globalmigration scene has changed significantly andmigration within and between developingcountries has become as intense as themovement of people from developing countriesto Europe and North America.Figure 1: Global migration in the 21st centuryChanging direction of European migrationThe dominant direction of European migration began to change with the end of WWII and the reconstruction of industrial countriesin northern European. The urgent demand for manual labor in north countries was met by southern European countries such asItaly, Spain, Portugal, and Greece and such was the pace of this migration that between 1960 and 1975, at least two millionSpaniards left to go to other European countries and another 1.5 million became seasonal agricultural laborers moving betweencountries such as France, Switzerland and the UK.New European needs and new migrantsThis pattern of post WWII European migration again changed in the 1980’s when the establishment of the European Community,including Greece, Italy, Portugal and Spain began to produce dramatic improvement in standards of living and in doing so reducedthe need for Europeans to leave to seek work elsewhere. The change in migration need, coincided with unexpectedly rapid falls inEuropean birth rates and a growing longevity of older people. Together, these phenomena gave rise to the growth of new service industriesand a demand for “new blood” that could only be met through the arrival of people from outside the EU, and for the first time in history,Europe became a pole of attraction for people as opposed to a sender of people. Migration from former colonies and then a widerspectrum of countries quickly took hold and created a pattern of migration from developing countries and from countries in transition.Migration and migrants as controversialDespite its proven historical importance for both sending and receiving countries, migration has become controversial and at timesconflictive (G.F. Gensini et al., 2004). Today, when the economic and social benefits of migration into the EU have been welldocumented, and when overall net EU migration is still relatively low, there is still a tendency for the in-migration of people fromoutside the EU region to be questioned and at times rejected. One of the implications of this questioning, if not rejection, of migrationand migrants has been that European countries have on the whole been caught unprepared to respond to the public health challengesthat are inevitably associated with the arrival of large numbers of people from disparate countries and with different health experiences.66

Types of Migration And MigrantsThe term migration covers a wide range of movement, the motives for it and the conditions under which it takes place.It is nevertheless important to keep in mind that not all migrants come from the same type of background, nor do all migrants movefor the same reasons and under the same circumstances. The vulnerability of migrants from different backgrounds to communicableand non-communicable diseases is likely to be different and so is their capacity to respond to their health needs and participatein national public health programs. Much of the literature on viral hepatitis (and health/disease in general) and migration doesnot address these qualitative differences. The most important forms of migration from the perspective of the numbers of peopleinvolved include:Economic migrationPoverty and the desire for a better life continue to be among the most important factors motivating people to move. The fact thatboth real and relative poverty is becoming more pronounced, and that the gap between rich and poor countries is growing, thistype of migration is likely to continue. The range of people moving for economic reasons is broad, and includes highly skilledmigrants from “good” social and economic backgrounds. However, the largest portion of migrants is, and will continue to be, madeup of people fleeing disadvantaged socioeconomic and environmental backgrounds, where the prevalence of HBV and HCV, as wellas many other communicable diseases, is high and certainly higher than in most EU countries.Rural to urban migrationAlthough rural to urban migration is rarely mentioned, it is probably the single most important form of migration in developing andrapidly industrializing countries. In China, up to 3.5 million people are estimated to move between rural areas and cities everymonth, and although these same types of figures are lower in other countries than in China, they are nevertheless proportionatelyvery high. When looking at communicable diseases for which data are available, such as HIV and TB, it is clear that rural-to-urbanmigration presents many of the same challenges as international migration. Those who move tend to be from poor backgroundsand move into poor, crowded social and physical environments that are replete with opportunities for exposure to a variety ofinfectious diseases.Irregular or undocumented migrationSocial and political attitudes to migration have become more stringent in recent years, and countries have introduced measuresdesigned to make in-migration (even for short periods) more difficult. Contrary to many expectations, the result has not been adiminution in the number of people moving, but rather a marked increase in the number of people moving “irregularly” acrossborders, deliberately unseen by national and local authorities, including those responsible for public health. Although it is difficultto define exactly how many people are involved in this irregular migration, the number is thought to be growing and possiblyexceeding the number of people moving officially and in a recorded fashion (Carballo et al., 2004). From the perspective of publichealth and viral hepatitis prevention and control, irregular migrants present difficult challenges. Not only do they remain unseenand benignly neglected by local authorities, but they also remain largely unreached by health initiatives. Their conditions of life,which are often characterized by overcrowded and promiscuous housing, poor hygiene, frequent mobility within and between cities,marginalization from health care systems and a reluctance/fear of being identified by judicial authorities, make the task of reachingthem with screening, early diagnosis and treatment difficult.67

Smuggled migrationSome irregular migrants travel unaided, using their own means to cross borders, but many others pay to be smuggled into countriesof final destination. While many pay in cash prior to relocation, others arrange to pay over time once they are re-settled in countries.Women who are smuggled are at risk of being asked to provide sexual favors or to work in sex trade much the same way astrafficked women are (see below). Their rights to complain and/or bring charges against smugglers are constrained by the fear ofbeing picked up by police and sent back to countries of origin. Their access to, and use of, health care services is limited by fearof being reported to legal authorities and also by the fact that many are ignorant of what services exist and how to use them,including in the context of sexually transmitted infections.Trafficked migrationThe last twenty years have seen an major increase in trafficking, especially of women. Estimates of the numbers involved in thismodern form of slavery vary considerably but the European Commission has referred to 120,000 women and children traffickedinto Western Europe every year (Salt and Hogarth 2000) and the International Organization for Migration has put the global numberof trafficked people at over 12 million (IOM, 2009). Most of the women who are trafficked are forced into illicit sex work that ispoorly supervised in terms of health. Trafficked women are usually moved frequently between cities in order to prevent themdeveloping social networks and their options of seeking or receiving health care for sexually transmitted infections as well as otherhealth problems are few and of little interest to their managers. The risk of sexually-acquired viral hepatitis among trafficked womenis not known, but deserves to be seen as a potentially major problem.Political migrationConflicts remain a major cause of forced migration and the last twenty years have seen the number of refugees (people forced toflee across borders) and internally displaced people (people who have to flee but remain within their national borders) come toconstitute a significant proportion of all people “on-the-move” around the world. Most refugees move from, and to, other developingcountries, but a significant proportion of them eventually make their way to EU countries. Since 1951, the rights of refugees,including the right to health care, have been protected by the International Convention on the Rights of Refugees, which in 2002was ratified by 141 countries. The rights of IDPs, however, including their health, essentially remains the responsibility of their owngovernments and is often neglected, if not further abused once they flee. Many IDPs as well as refugees go on to leave theircountries of origin and make their way to third countries, including EU countries. In the case of both refugees and IDPs, the socialand environmental conditions in which most of them are forced to live, even temporarily, tend to be poor and conducive to thespread of infectious diseases. Meanwhile, few if any, humanitarian relief programs, including those managed by the UN, have takenup viral hepatitis as a theme for action.Environmental migrationEnvironmental degradation and disasters are an important and growing force in the displacement of people, and the number ofpeople involved has been steadily growing. Global warming, and the many socio-environmental changes that are predicted to comein its wake, are expected to displace even more people in the coming years (Carballo, 2010). Some estimates have referred to asmany as two hundred million people being forced to move as a result of rising sea levels, flooding and coastal erosion in someregions, and chronic, worsening drought in others. Most of the burden of climate change will be borne by developing countrieswhere the prevalence of viral hepatitis and other communicable diseases has traditionally remained high, and where national healthcare systems continue to be weak. For many of the people who will be forced to move, there will be few economic opportunitiesand most are expected to move into settings of poverty where the exposure to viral hepatitis will continue to be high and where forgirls and women sex work will probably become one of the survival options (Carballo, 2010).68

Educational migrationBy the end of the 20th century the educational sector had become an international multi-billion dollar industry and a major driverof human mobility (Carballo et al., 1997; DiCerbo, 2001). Usually not considered as “migrants”, people moving to pursue educationalcareers tend to move from developing to developed countries and share many of the same health and health care challenges withother migrants.Circular migrationImproved transportation has made it increasingly possible for people to be given very short-term work contracts. This together withthe seasonal nature of some types of migrant work (such as in agriculture), has made circular migration in and out of the EUincreasingly common. Within this “circular system”, migrants come and go for periods of months, creating a constant flow of peoplemoving between different socio-ecological and health zones. Circular migrants constitute a growing body of people about whomlittle is known and whose health and health care is difficult to track. They are often undeclared by employers and the temporarynature of their work makes it easy for employers not to provide health coverage. Their living conditions meanwhile, are often poorand health-risky.Tourist migrationThe last three decades have seen a rapid and still accelerating growth in tourism, that is to say people travelling with the intentionof staying "in places outside their usual environment for more than twenty-four (24) hours and not more than one consecutive year”(WTO 1995). They move for purposes of leisure and business rather than work. In 2008, there were over 922 million recordedinternational tourist movements and the prediction is that by 2020 the global number of tourists will exceed 1.6 billion people (WTO2009). The World Tourism Organization (WTO) estimates that in 2004 about 461 million tourists visited HBV-endemic countries.Given the changing nature of tourism and the fact that people are not only moving further but also into new more intimate interactionwith local and disparate groups of people, the risk of HBV infection is being heightened (El Sayed et al., 1996) and even though arecent Dutch study concluded that the risk of short-term tourists acquiring HBV is no higher than it is for people who do not travel(Sunder et al., 2009), the fact is that sex tourism is growing (Michalowski, 2001; Leidholdt, 2005) and bringing people from lowendemic countries into contact with sex workers and others in countries with far higher rates of both HBV and HCV. Sex tourismmay thus constitute a vital part of the viral hepatitis movement chain.69

Defining the ChallengeDespite the social, economic and health importance of migration, there are few precise figures on the number of people moving inand out of countries, or the conditions under which they are moving.Numbers involved globallyOfficial UN figures (UN 2005; IOM 2005) suggest that upwards of 200 million people can be defined as “living outside their placeof birth,” but this does not take into account the massive number of people moving from rural to urban areas, refugees and thegrowing number of IDPs, the people moving irregularly across borders, the growth of regular economically-motivated migrantsmoving for long periods of time between countries, the people being trafficked and the circular migrants people moving to andfrom countries for shorter periods of time. If all these people are included, the true number of people on the move who have thecapacity to change the global epidemiology of viral hepatitis, as well as other communicable and non-communicable diseases,could be at least and is probably far more than one billion (UNAIDS 2008).Numbers and fluidity of movement in the EUJust as with overall global estimates, it is difficult to say with precision how many people are moving into and within the EU regionor for what periods of time. The movement of people, however, is growing in size and scope. Eurostat reports suggest that in 2005,the EU had a net gain of 1.8 million people (Eurostat 2006), and this does not include people entering irregularly and possiblydoubling the number of recorded newcomers. The EU Blue Card system, designed to facilitate the movement of skilled third countryworkers to enter, work and live in partner countries, will gradually facilitate even further movement between EU countries, some ofwhich have very different public health profiles. In some countries, such as the UK, the 565,000 new people who arrived in 2005primarily from Asia and Africa were offset by approximately 380,000 people who left the UK to go to other countries such as Spainand France, both as retirees and workers (ICMHD, 2009), but in general more people are arriving than leaving the EU. While it isdifficult to say exactly how these movements are affecting the overall health profiles of countries or national health care systems,there is no doubt that health care needs are changing (Carballo, Divino and Zeric, 1997).Proportion of domestic populationsThe extent to which the arrival of people from other parts of the Europe and the larger world is changing the demographic structureof receiving countries varies considerably. The demographic impact of newcomers in small countries such as Luxembourg andLichtenstein has been more marked than in larger countries, but in many parts of the EU and especially in the western part ofEurope, foreign-born people constitute a relatively large proportion of the total population of countries.In Luxembourg and Liechtenstein, migrants now constitute about a third of the total population, and in Switzerland (EFTA country),they make up 23%In Austria and Ireland, they represent about 14% of the population and in Germany, Sweden, Spain, France and the Netherlandsabout10% and 12% of the population (ICMHD 2009).70

CountryPercentages of migrants in selected European countriesLiechtenstein 33.0%Luxembourg 33.0%Switzerland 25.0%Ukraine 14.7%Austria 14.0%Ireland 14.0%Germany 12.3%The Netherlands 10.0-12.0%Spain 10.0-12.0%Sweden 10.0-12.0%France 10.0%United Kingdom 9.0%Russia 8.5%ICMHD 2009Diversity and distributionThe range of countries migrants arrive from can be an important indicator of their health profiles people and what the implicationsof this may be for the health system of host countries. In Italy, where about 5 million migrants are officially known to have arrivedin recent years, and where the number of irregular migrants may be almost as high, the diversity of backgrounds has continued togrow. Asian migrants have become increasingly prominent and now exceed migrants from North Africa. Even so they only representabout 16% of the total migrant body which includes as many as 2 million Romanians, as well as newcomers from Ukraine, Poland,Moldova, Macedonia, Serbia, Bulgaria, former East Germany, Bosnia, Russia, Croatia, Slovakia, and Hungary all of whom now makeup approximately 54% of the migrant population in Italy. People from North and Sub Saharan Africa constitute an estimated 22%of migrants and people from Latin America about 8.1% (Eurostat 2007). As in other EU countries, most (87%) have settled in partsof the country where there is a labor demand and a relatively good absorbability potential.How many more people are likely to arrive in the EUMigration is essentially a supply and demand phenomenon and to date migration into the EU has reflected the growing need fornew people to compensate for dramatically falling birth rates, rapidly aging populations and increasingly fragile social securitysystems. The UN estimates that in order to keep economic and demographic support ratios at their 1995 level, as many as15 times more migrants than arrived in the 1990s will be required (UN 2001). Thus irrespective of whether these figures areattainable or politically acceptable, the fact is that the EU will inevitably see migration continue to grow for many years to come.71

Where will they come from and how will they get thereWith time the backgrounds of migrants can be expected to become increasingly diverse as the felt need to leave countries changesand as opportunities for transportation improve. Until the middle of the 20th century, when most European migrants went tothe USA, Canada, Australia the routes they took were relatively direct and involved few, if any, stopovers. In the context of contemporarymigration this has changed, and especially in the case of people who move irregularly, the process is becoming longer, morecircuitous and involving many stopovers whose duration can last months or even years. During these stopovers, migrants work andlive in poor social and environmental conditions that are replete with risks for new or aggravated infections such as viral hepatitis.Figure 2: Key Migrant routes from Africa to EuropeBBCFigure 3: The long road to EuropeBBC72

Migration and HealthMigration is a major “life event” that can have difficult implications for mental and physical health, health promotion and protection(Mirdal, 1985; Selten et al., 1994; Liebkind, 1996). Migration involves uprooting, leaving family and close friends behind without knowingif and when they will be seen again. In many cases it means moving to countries that migrants know little about and then havingto confront chronic job insecurity, complex legal requirements and coping with new languages, cultures and health care systems.Migration and health as a multi-stage processMigration is a dynamic, multi-stage process that, from the perspective of health and health care, presents both challengesand opportunities for when and how to intervene.Stage 1Pre-migrationhealth statusand careexperienceStage 2Exposure todisease andhealth carein transitStage 3Exposure todisease andcare in countriesof destinationStage 4Health andhealth care onperiodic return toplaces of originStage 5Circular migration,periodic infectionand poor trackingCarballo, 2008nnnnnIn Stage 1 the medical profiles of people are established and their “health prints” are formed by prevailing social, economicand environmental conditions where they are brought up and/or live in. If people move, they inevitably take these “health prints”with them to destination countries. Those moving from countries with a high prevalence of viral hepatitis, and who have beenat “high” risk of acquiring hepatitis in childhood, are more likely to carry it on to their next destination than people who broughtup in low prevalence environments.In Stage 2, which encompasses the transit of migrants (and tourists) through other countries, a further burden of viral hepatitiscan be imposed if the countries they move through have a high prevalence of the disease. In recent years the routes taken bysome migrants have become long, and the socio-health conditions in which they live during the process are poor. Their exposureto infectious diseases such viral hepatitis will be proportionate to the time they stay, and the extent to which they interact withlocal communities. This is true of tourists as well as migrants.In Stage 3, which begins once migrants arrive in the countries of final destination, the risk of exposure to diseases of poverty,including viral hepatitis, can continue to be high. For no matter how wealthy these countries may be, the reality is that theliving and working situations many migrants move into are often poor. Low-skilled, low-income migrants (especially irregularones), tend to move or be moved into low-income, overcrowded locations (de Jong & Wesenbeek, 1997; Carballo et al., 1997;Carballo et al., 2004) and they often find themselves doing the “dirty” jobs that nationals and previous migrants no longer wantto do, and which carry an increased risk of disease exposure (Camargo et al., 1994; Bollini & Siem, 1995; Carballo & Siem, 1996).In Stage 4, in which migrants return home for holiday and to visit family, the potential for exposure to viral hepatitis can beespecially serious for young children who have not been immunized against HBV, or who have not developed a natural immunity.Overcrowding, physical promiscuity and poor environmental conditions of households and other facilities they stay in areadditional factors that can add to the increased risk of infection.In Stage 5, which involves the on-going circular migration of workers, the constant opportunity for exposure to disease in bothcountries of origin and host communities is equaled by the inability of health systems to reach migrants or for migrants to ever“get to know” those health systems and benefit from any health information and interventions that may be available.73

Migration and Culture of Health CareIn addition to their “health prints”, migrants also carry with them a set of cultural attitudes and beliefs they have developed oradopted about health, prevention of disease and health care.Cultural adaption to poor healthThe attitudes and beliefs migrants from poor countries reflect the dominant social and health care situations in which they lived.In settings where care is limited and where morbidity and mortality is high, people tend to develop attitudes that assign the reasonsfor illness to fate, and in these situations they tend to believe that little can be done to either avert or cure certain types of illness.Impact of fatalismPublic health responses to the needs of migrants can be seriously impaired unless these beliefs and attitudes are taken into account,and even then they are not easily overcome. Thus even if and when migrants do have access to a quality health care system in thecountries they move to, they are not always able to use these services effectively or efficiently if they often continue to feel that littlecan be done to avert what fate has decided for them. In settings where host health care providers are not pro-active in reachingout to migrants these ideas, no matter how ill-founded can continue to dominate their health actions and limit their capacity tobenefit from health promotion/protection activities such as HBV immunization.74

Migration and Infectious DiseasesThroughout history, migration and migrants have been met with a suspicion and fear that they carry with them infectious diseases.The Black Plague was associated with the movement of travelers, and city states and countries quickly began to enact laws governingthe entry (and rejection) of people thought to be at risk (Sehdev, 2002; G.F. Gensini et al., 2004). The movement of people betweencountries by ship led to even greater fears about the capacity of travelers to introduce different types of diseases and gave rise tothe quarantine regulations that remain operative in many parts of the world today (Ries, 2004). Quarantine regulations have beenmost frequently applied to diseases such as TB, HIV, and more recently, SARS, but not viral hepatitis.Changing patterns of infectious diseasesThe 20th century saw significant changes in the prevention and management of infectious diseases (CDC, 1999). This progress,however, did not come at the same pace everywhere, and in some parts of Europe high rates of diseases such as hepatitis Apersisted until relatively recently. In developing countries and in countries in transition, where the investment in public health hasbeen limited and where poverty has remained widespread, infectious diseases have continued to spread. Many of these countriesare the countries from which people are now moving to come to the EU. This is not to say that the arrival of these people willaxiomatically bring with it new infections, but rather that the global situation is changing to a degree that it is no longer possible tothink of these diseases as being restricted to particular parts of the world.Healthy migrantsMost migrants tend to be young (and getting younger), and on the whole they are the healthy “survivors” of settings otherwisecharacterized by high rates of infant and young child mortality. In the case of viral hepatitis a significant proportion will have beenexposed in infancy and developed immunity. Others will have become carriers but will otherwise be healthy and capable of workingwithout knowing they are infected and without attracting any undue attention.75

Migration and Viral HepatitisWhile fears surrounding the links between human mobility and the spread of diseases such as TB have long been around, concernhas only now begun to be focused on viral hepatitis and its potential mobility. Given that almost 50% of the world’s population livesin areas of high chronic HBV prevalence (Lavanchy, 2004) and that global migration is increasingly involving people from theseareas, this attention is long overdue.Variability of distributionAs more and better data becomes available, it is increasingly clear that there are major geo-political variations in the distribution ofHBV and HCV. Three main prevalence zones of chronic HBV infection: high (>8%), intermediate (2-8%), and low (

Migration from high prevalence regionsMuch of migration into EU countries has involved and continuesto involve the movement of people from parts of the worldthat have high or intermediate levels of HBV and HCV. Someof these parts of the world, such as Asia, have become more“mobile” than others and have become prominent “senders”of people to European and North American countries. In the UK,for example, where ethnic minorities now constitute about6% of the total population, post WWII in-migration primarilyinvolved men from Pakistan, Bangladesh and India, all ofwhich were then and still are high HBV-prevalence areas.This was followed by a relatively massive migration from Eastand Southern Africa and the Caribbean, which are alsoconsidered high to intermediate viral hepatitis areas. Coloniallinks have also tended to define migration into Belgium,France, Spain and Portugal. Today in Belgium where about22% of the overall population is of foreign background,in Antwerp 56% of all children are of North and CentralAfrican origin. Similarly in France 4-5 million people can tracetheir roots to former colonies in Africa and the West Indies.Only more recently has it involved large numbers of peoplefrom North and Sub Saharan Africa, Asia and Eastern Europe.Figure 4: Ethnic profile of the UK15%25%5%5%50%n Asian: 50% (Indian, Pakistani and Bangladeshi 1,500,000n Black: 25% (African and Caribbean) approximately 875,000n Mixed: 15%n Chinese: 5%n Other: 5%Migration and injecting drug useFor a variety of reasons, migrants and their offspring are often more vulnerable to exposure to drugs (including alcohol and tobacco)than other people of similar socio-economic background. Coping with cultural and socio-economic demands as well as marginalemployment and low salaries is not easy and in the case of children of migrants there is the added load of feeling unwanted anddifferent. This has not been lost on drug dealers who target young migrants and children of migrants looking for a “way out” orwanting to make a statement of rejection of both their parents and the host society (Carballo, Morival and Zeric 1998). In the fiveEU cities that were studied, over 61% of those studied said they had been approached by drug dealers (in Belgium and France theproportions were 79% and 77%), and overall, women were twice as likely as men to have traded sex for drugs (ibid). An associationbetween injecting drug use and HIV in mobile populations has been highlighted by a number of studies (Mayer 2000, Beyrer et al.,2000; Wood et al., 2000; Deren et al., 2003; Lagarde et al., 2003; Organista et al., 2004; Parrado et al., 2004) and in some casesit has become evident that injecting drug practices in migrant groups frequently involves more sharing and poor cleaning ofequipment than in other groups of similar age and socio-economic background (Freeman et al., 1999; Pashane and Fisher 2000).Migration and sex workA recent report indicates that as many as 47% of all female sex workers in Europe are migrants, 47% of all transgender sex workersare migrants, and 32% of all male sex workers are also migrants. This “migrantization” of sex work, which has potential implicationsfor viral hepatitis, and can be partially explained by the growing trafficking industry primarily from Eastern Europe and Central Asia,and in general the low social status and illegal status of many migrants from all over the world. The economic and legal fragilityof many migrants, especially but not only women, whose chances of other work are limited lends itself easily to sexual abuse,even in the domestic work place (Carballo et al., 2004). Forcing women and men who find themselves in situations of legal andeconomic fragility into sex work is also facilitated by the fact that in many cases the women concerned hope that more regularrelationships will emerge through their work.77

Migration and Patterns of HBV and HVCAs far as demonstrated links between migration, migrants and viral hepatitis are concerned, it is important to note that the data arevariable. Studies on the dynamics of migration and health have tended to be small and often not representative of larger populations.Some have used different definitions of migrants; others have used very different sampling techniques and study methods. In someinstances, questions have simply been added to other surveys that were never designed to address health-related issues amongmigrants. The implications of all of this for understanding the nexus of migration and HBV and HCV health are considerable, but somepicture of the emerging situation can nevertheless be discerned. Some of the more significant data found in our review are presentedbelow. For each country there is also an indication of what is known to be the prevalence of HBV and HCV in the host country andwhat is known about the main countries of migrant origin and the patterns of HBV and HCV in those countries.BELGIUMHBV prevalence: 0.66% in the Flanders population (Quoilin, 2007)HCV prevalence: 0.12% in the Flanders population (Quoilin, 2007)The prevalence of HBV and HCV in the population of Flanders is estimated to be 0.66% and 0.12% respectively (Quoilin, 2007),and the main countries of migrant origin are Italy, France and the Netherlands (Eurostat, 2008). The estimated prevalence of HBV inthese latter three countries is 0.68% in France (Balinska, 2008); 0.91% in Italy (Da Villa et al., 2006) with 2% in the North and 4% inthe South (Fabris et al., 2008); and between 0.35-0.53% in the Netherlands (Marschall et al., 2008). In the case of HCV, France hasan estimated prevalence of 1.3% (Pradat et al., 2008) and the Netherlands a prevalence of 0.0169% in blood donors (Slavenburg,2008). It should nevertheless be borne in mind that Belgium also hosts smaller but nevertheless significant migrant populations from SubSaharan Africa and Asia where the prevalence of HIBV and HCV is much higher than in the three main migrant-origin countries.Main countries of migrant origin: Italy, France, Netherlands (Eurostat 2008)HBV prevalence in countries of origin: Italy 1.5% (Tafuri et al., 2010); France 0.68% (Balinska, 2008);the Netherlands 0.35-0.53% (Marschall et al., 2008)HCV prevalence in countries of origin: Italy 2-4% (Fabris et al., 2008); France 1.3% (Pradat et al., 2008);The Netherlands 0.0169% in blood donors (Slavenburg, 2008)DENMARKHBV prevalence: 0.03% in the general population (Cowan, 2005)HCV prevalence: 0.3% in the general population (Omland et al., 2010)A study of children and employees in day-care centers that had a high proportion of migrant children (55% non-Scandinavian origin)found only one HBV case, and concluded that in general HBV prevalence in pre-school children in Denmark is low even amongmigrants from high endemic areas (Fisker, 2002). Another study nevertheless noted that while declines in the prevalence of HBsAgcarriers (from 0.15 to 0.03%) as a result of vaccination programs had not been affected by HBsAg carriers from abroad, the effectof migration on the incidence of acute HBV infections should be taken into account in planning all vaccination strategies (Gjørup,2003). It also noted that acute HBV infection in children often passes unnoticed because it is subclinical and that notification ofacute HBV remains incomplete in Denmark, possibly even more so in migrant groups. Studies of HBsAg in migrants between 1998and 2002 that found prevalence of 0.6% in children and 2.6% in pregnant women similarly concluded that the prevalence of HBVin migrants was not changing the overall profile of HBV in the general population (Cowan, 2005).Main countries of migrant origin: Turkey, Iraq, Germany (Eurostat 2008)HBV prevalence in countries of origin: Turkey 4-8% (Gurol, 2006); Iraq 2.8% (Omer, 2004);Germany 0.2-0,32% (Wiegand et al., 2009)HCV prevalence in countries of origin: Turkey 1-4% (Gurol, 2006); Iraq 0.5% (Travel Medicine, 2008);Germany= 0.16- 0.21% (Wiegand et al., 2009)78

FRANCEHBV prevalence: 0.68% in the general population (2008, Balinska)HCV prevalence: 1.3% in the general population (2008, Pradat et al.)In France, one study found that pregnant migrant women had significantly higher HBV rates of HBV than pregnant “national” women,and those with a West Indian, South East Asian and Sub Saharan African origin were especially at risk of being HBV carriers (Denis,2004). Similar findings were reported for HCV in pregnant women (Roudot-Thoraval, 1992). Children of migrants of North African(Algeria, Morocco, Tunisia) origin also appear to be placed at high risk of acquiring HBV and HCV. This is due primarily to visits to tothe countries of parents’ origin, where a mix of poor hygienic conditions and high prevalence of viral hepatitis means that childrenwho have not been previously immunized, or developed immunity, are especially vulnerable (Siriez, Vitoux, Holvoet, & Bourrat, 2008).Main countries of migrant origin: Portugal, Algeria, Morocco (Eurostat 2008)HBV prevalence in countries of origin: Portugal 7.3% (Távora-Tavira, 2007); Algeria 4-7% (Travel Medicine, 2008);Morocco 6% (Travel Medicine, 2008)HCV prevalence in countries of origin: Portugal 0.5% in the general population (Travel Medicine, 2008); Algeria 0.5%(Travel Medicine, 2008); Morocco 1.1% (Travel Medicine, 2008)GERMANYHBV prevalence: 0.2- 0.32% (Wiegand et al., 2009)HCV prevalence: 0.16- 0.21%In Germany, where 84% of adult migrants come from countries with intermediate and high carrier rates of HBV, a university hospitalstudy of pregnant women reported a prevalence of 8% HBeAg-positivity (Malamitsi-Puchner et al., 1996). Additionally, another morerecent study, reported that 7.5% of all HBsAg-positive pregnant women from Albania were also positive for HBeAg (Knor et al.,2008). In 2004, it was estimated that there were 503,040 HBV carriers in Germany, and that while migrants only made up 13% ofthe population, people with a migrant background accounted for 42% of these carriers (Marschall, 2005). A particularly high riskof chronic infection has been found in Ethnic Germans returning from former Soviet Union countries, and in general migrants of allorigins were estimated to have a 4.3 times higher risk than “nationals” of developing chronic infection (Marschall et al., 2005).More recently, high rates of both HBV and HCV-related mortality and cancer have been reported in migrants originating from FormerSoviet Union countries where both these diseases are common, and where infection in childhood is common (Ott, Paltiel, Winkler,& Becher, 2008). The impact of migration on HBV among IDUs and people attending detoxification centers is also evident.Over 54% of Ethnic Germans and 45% of people of Turkish origin showed evidence of previous HBV infection, and 62% of Turkishpatients were also found to have HCV infection (Reimer et al., 2007). Similarly, a study of young offender’s in prison found significantlyhigher rates of HCV markers in young migrants than in native Germans (Meyer et al., 2007). A concern is that HBV vaccination isnot covered by the national health insurance, and migrants or low-income groups may not be covered (Ringwald et al., 2006).Main countries of migrant origin: Turkey, Italy, Poland (Eurostat, 2008)HBV prevalence in countries of origin: Turkey 4-8% (Gurol, 2006); 1.5% (Tafuri et al., 2010);Poland 1.0-1.5% (ECDC, 2010), 0.2-1.25% (CDC, 2008)HCV prevalence in countries of origin: Turkey 1-4% (Gurol, 2006); Italy 2-4% in South (Fabris et al., 2008);Poland= 1.4% (Mazurek, 2002)79

GREECEHBV prevalence: varies from 2-5% (Zacharakis et al., 2009)HCV prevalence: 1-2% (Manesis, 2009) and 2-4% (ECDC, 2010)In Greece, where HBV childhood vaccination programs have brought about major reductions in infection, a study of Albanian refugeesin Southeastern Europe, including Greece, reported high (12%) rates of HBV and concluded that this could present a threat for thegeneral population (Katsanos et al., 2004). People coming from the Former Soviet Union countries have been highlighted as beingat greater risk for HBV than the general population and other migrants (Elefsiniotis et al., 2009). A study of pregnant women foundan HbsAg prevalence rate of 12% among Albanian women and 2.1% among women from other Eastern European countries, togetherwith low (32.5%) vaccination-induced protection rates (Elefsiniotis et al., 2009). Other studies have referred to disproportionatelyhigh numbers of foreign-born people requiring treatment for liver diseases in addition to having positive markers for both HBV andHCV (Giannousis et al., 2010). Studies have also found an increased HBV and HCV burden linked to Kurds and people arriving fromAlbania and Former Soviet Union countries (Raptopoulou et al., 2009). The prevalence of HCV on the other hand seems to berelatively low, but extended epidemiological surveys are needed to provide valid results (Roussos, 2003). A recent retrospectivestudy of viral hepatitis concluded that the implications of migration from countries with high rates of HCV and HBV have not yetbeen well enough studied (G. V. Papatheodoridis et al., 2009).Main countries of migrant origin: Romania, Albania, Morocco (Eurostat, 2008)HBV prevalence in countries of origin: Romania 6% (ECDC, 2009); Albania 9.5% (Resuli, 2009); Morocco 6% (Travel Medicine, 2008)HCV prevalence in countries of origin: Romania 4.9% (Tiribelli, 2003); Albania 9.5% (Resuli, 2005); Morocco 1.1%(Travel Medicine, 2008)HUNGARYHBV prevalence: < 1% (Gyarmathy, Ujhelyi, and Neaigus, 2009)HCV prevalence: < 1% (Gyarmathy, Ujhelyi, and Neaigus, 2009)In Central and Eastern Europe, where the Roma constitute about 5-10% of the population their high mobility and mobile group thatshares many of the social and living characteristics of migrants. A study of the Roma in Budapest, Hungary found they were lesslikely to have been immunized against HBV than people in the general population, were more likely to be using injecting drugs,and more likely to have significantly higher rates of HBV and HCV infection. The social marginalization of the Roma, their unhygienicliving conditions, poor access to health care services, and low levels of education were highlighted as possible factors in theirelevated HBV and HCV rates (Gyarmathy, Ujhelyi, & Neaigus, 2008).Main countries of migrant origin: Romania, Russia/Ukraine, Germany (Eurosat 2008)HBV prevalence in countries of origin: Romania 6% (ECDC, 2009); Russia and Ukraine 2-7% (Zacharakis, 2009);Germany 0.2-0.32% (Wiegand, 2009)HCV prevalence in countries of origin: Romania 4.9% (Tiribelli, 2003); Ukraine 0.24-2.0% (Butsashvili, 2001);Germany 0.16-0.21% (Wiegand et al., 2009)80

IRELANDHBV prevalence: 0.51% in the general population (O'Connell et al., 2000)HCV prevalence:

NETHERLANDSHBV prevalence: 0.35%- 0.53% in general population (Marschall et al., 2008)HCV prevalence: 8% (Travel Medicine, 2008);Russia and Ukraine 2-7% (Zacharakis, 2009)HCV prevalence in countries of origin: Brazil 2.6% (Travel Medicine, 2008); Cape Verde Hepatitis C is endemic butthe prevalence is not well documented (Travel Medicine, 2008); Ukraine= 0.24-2.0% (Butsashvili, 2001)82

IRELANDHBV prevalence: 0.51% in the general population (O'Connell et al., 2000)HCV prevalence: 10%(Travel Medicine, 2008)HCV prevalence in countries of origin: Moldova 4.7% (Travel Medicine, 2008); Turkey 1-4% (Gurol, 2006); China 3%(Travel Medicine, 2008)SPAINHBV prevalence: 5% prevalence of HBV infection overall (Salleras et al., 2009)HCV prevalence: 0.7% (Travel Medicine, 2008)An early study of HBV in a cohort of recently arrived Sub Saharan African migrants reported past HBV markers in 36.4% of adultsand 33.3% of children; HCV markers were found in 8.6% of adults and 2.4% of children (López-Vélez, 1997). A more recent studyhas reported hepatitis B surface antigens in 10% of Sub-Saharan African patients and a prevalence of co-infection with HCV of1.6% and 0.9% with HDV (Monge-Maillo, 2009). Studies of HBV infection among the gypsy (Roma) population have reported aprevalence of 29% and others have similarly reported a higher prevalence of HCV and HIV infection in gypsies than in the generalpopulation (Hosseini Asl, et al., 2004).Main countries of migrant origin: Romania, Morocco, Ecuador (Eurostat 2008)HBV prevalence in countries of origin: Romania 6% (ECDC, 2009); Morocco 6% (Travel Medicine, 2008); Ecuador 2-7%(Travel Medicine, 2008)HCV prevalence in countries of origin: Romania 4.9% (Tiribelli, 2003); Morocco 1.1% (Travel Medicine, 2008);Ecuador 0.7% (Travel Medicine, 2008).83

SWEDENHBV prevalence: 0.06% in a representative population (Sánchez-Tapias, 2004)HCV prevalence: 0.2-0.5% (Duberg et al., 2008)A study of the effect of migrants in Sweden found that in spite of the number of people from high endemic countries, this has notmeant a measureable increase in overall HBV rates (Christenson, 1997). A later study conducted in 1999 on the other hand notedthat the number of chronic carriers in the country is increasing as a result of migration and is especially notable in schools and daycare centers (Söderström, et al., 1999). A later study noted that the percentage of migrants (9%) in the HCV infected population wassomewhat lower than in the general population of which 12.9% were born in a country other than Sweden (Duberg et al., 2008).Main countries of migrant origin: Finland, Iraq and Denmark (Eurostat, 2008).HBV prevalence in countries of origin: Finland

Extrapolating from Countries of OriginBecause in many countries there were few or no data on migrants and HBV or HCV, we have chosen to highlight what is currentlyknown about the main origins of migrants to these countries and what is known about patterns of viral hepatitis in the countries ofmigrant origin. This is not to say that equivalent prevalences of HBV and HCV would be found in migrants from these countries ifstudies were to be done, but it nevertheless provides an image of the relative situations.AUSTRIAThe prevalence of HBV and HCV in Austria is estimated to be 3% (ECDC, 2010). An earlier report placed the prevalence of HCV in specific groups as blood donors at1.4%, people with hemophilia and being treated for it at 78%, people on haemodialysis at 42% and medical staff at 1.2% (Naoumov,1999). The three main countries of migrant origin are Russia, Ukraine and Greece (Eurostat, 2008). In Russia and Ukraine theestimated prevalence of HBV is between 2 and 7% (Zacharakis, 2009) and in Greece, between 1.9 and 5.0% (Zacharakis et al.,2009). The prevalence of HCV in Russia is 5.6% (Shustov, 2005), in Ukraine 0.24 -2.0% (Butsashvili, 2001) and in Greece 1.0 -1.9% (Manesis et al., 2009).CYPRUSCyprus is among the most HBV-affected EU countries. A study of HBV reported a prevalence of 11% in armed forces personnel and14% among blood donors (Papaevangelou et al., 1988) and a more recent study in northern Cyprus found an HBV prevalence of4-10% (Altindis et al., 2006). The prevalence of HCV in the general population has been estimated to be 0.1% (Lavanchy, 1999).The three main countries of migrant origin are Sri Lanka, UK, and the Philippines (Eurostat report, 2008), and in these the estimatedprevalence of HBV is 1.4% (Travel Medicine, 2008), 1.2% (Balogun et al., 2000,) and 3.6% (Travel Medicine, 2008) respectively.The estimated prevalence of HCV in the UK general population in 2000 was 1.2% (Balogun et al., 2000).CZECH REPUBLICThe estimated HBV prevalence in the general population of the Czech Republic is between 1-5% (Katsanos et al., 2004) and recentstudies of HCV in the general population found a prevalence of 0.68% (Tiribelli, 2003) and 35% in a sample of IDUs (Zabranskyet al., 2006). The three main countries of migrant origin are Russia/Ukraine, Slovaki and Vietnam (Eurostat report, 2008). The estimatedprevalence of HBV in these countries is 2.7% (Zacharakis, 2009), 0.5-1.5% (Rantala 2008) and 19% (Nguyen2008). The estimatedprevalence of HCV in the three countries is 0.24-2.0% (Butsashvili, 2001), 0.4% (Lavanchy, 1999) and 1.0% (Nguyen, 2007).85

ESTONIAWith a reported HBV prevalence of 79% in IDUs (Kaldmal et al., 2000) and an estimated prevalence of between 4-7% in the generalpopulation (Travel Medicine, 2008), Estonia is one of the more HBV affected countries in the EU. HCV prevalences of 82.6% havebeen reported for IDUs (Kaldmae et al., 2000) and 1.5-2.0% in the general population (Travel Medicine, 2008). The three maincountries of migrant origin are Russia, Ukraine and Belarus (Eurostat 2008) and in these countries the respective prevalenceof HBV is estimated to be 2-7% for Russia and the Ukraine (Zacharakis, 2009) and 7% for Belarus (Travel Medicine, 2008).HCV prevalence in the three countries is estimated to be 5.6% (Shustov, 2005), 0.24-2.0% (Butsashvili, 2001) and 1.4% (TravelMedicine, 2008).FINLANDHBV prevalence in the general population has been placed at

MALTAMalta is another country which has a significant hepatitis prevalence rate, but for which migrant hepatitis data is unknown. The estimatedHBV prevalence rate within the general population is 2-7% and it is clear that HCV is endemic to the country, although the exactprevalence rate is unknown (Travel Medicine, 2008). The top three migrant countries of origin are the UK, India, and Serbia (Eurostatreport, 2008). The HBV prevalence in these countries is 0.3% (2008, Rose), 4.7% (Batham et al., 2007), and 2.08% (Levitt et al.,2004) respectively. The HCV is prevalence is estimated at 1.2% (2000, Balogun et al.) in the UK, 1.85% in blood donors in NewDelhi, India (Sy, 2006), and in Serbia it is estimated at 63% in IDUs in Belgrade and 22% IDUs in Podgorica (Judd, 2009).POLANDIn Poland, the HBV prevalence is estimated at 1.0-1.5% (ECDC, 2010), and the HCV prevalence is estimated at 1.4% in the generalpopulation (Mazurek, 2002). The top three countries of origin for migrants to Poland are Germany, Ukraine, and Russia (Eurostatreport, 2008). In Germany, the estimated prevalence of HBV and HCV is 0.2-0.32% and 0.16-0.21% respectively (Wiegand et al.,2009). The Ukraine and Russia both have an HBV prevalence of 2-7% (Zacharakis, 2009), while the Ukraine has an estimated HCVprevalence of 0.24-2.0% (Butsashvili, 2001), and Russia has an estimated prevalence of 5.6% (Shustov, 2005).SLOVAKIAIn Slovakia, HBV is estimated to be prevalent in 1.0-1.5% of the general population (ECDC, 2010), while HCV is estimated to beprevalent in 0.67% of the general population (Schréter, 2007). The top three migrant countries of origin within the country are theCzech Republic, Poland, and the Ukraine (Eurostat report, 2008). The HBV prevalence in these countries is 0.7% (Krekula et al.,1996), 0.2%-1.25% (CDC, 2008), and 2-7% (Zacharakis, 2009) respectively. The HCV rates are estimated at 0.68% (Tiribelli,2003), 1.4% (2002, Magurek), and 0.24-2.0% (Butsashvili, 2001).SLOVENIAIn Slovenia, HBV is estimated to be prevalent in less that 0.5% of the general population (ECDC, 2010), with HCV estimated in 22%of IDUs (WHO, 2006), although general population rates remain unclear (Travel Medicine, 2008). The top three migrant countriesof origin are Bosnia and Herzegovina, Serbia, and the Former Yugoslav Republic of Macedonia (Eurostat report, 2008). The HBVestimated HBV prevalence in these countries is as follows: 2-7% (Travel Medicine, 2008), 2.08% (Levitt et al., 2004), and 2.0-7.0%(Travel Medicine, 2008) respectively. The HCV prevalence is unclear in Bosnia and Herzegovina (Travel Medicine, 2008), between22-63% in IDUs in Serbia (Judd, 2009), and also unclear in the Former Yugoslav Republic of Macedonia, although the HCV prevalencein neighboring Greece is 1.5% (Travel Medicine, 2008).SummaryAlthough there are few data on the observed relationship between migrants and viral hepatitis in many EU countries, there is goodreason to believe that patterns of HBV and HCV in these countries are being influenced by the arrival of people from countries withhigher prevalence rates of HBV and HCV. Why more information does not seem to be available for these countries may be due tothe fact that in-migration has been a relatively recent phenomenon and until recently its implications for health may not have beenapparent. In some Baltic countries, it may also be due to the fact that historically close ties with Russia and Ukraine (the mainsources of migrants) has meant that newcomers from these countries have nor been seen as migrants and they have not been thetarget of research.87

Challenges to Prevention and CareAs soon as the main routes of transmission of HBV and HCV were characterized it became theoretically possible to take steps toreduce the risk of transmission of viral hepatitis in the general population. To what extent those steps were or are being taken variesbetween countries.HBV ImmunizationHBV is an infection for which a proven effective vaccine exists and people who have been successfully vaccinated 1 or who havespontaneously gone on to develop anti-HBs antibodies after exposure to HBV are protected against HBV infection. Today 168 countriessay that they are providing universal vaccination (infants and/or adolescents) but only 131 out of the 168 have achieved more than80% coverage with three doses (Zanetti et al., 2008b). A study in Italy, Romania, and Slovakia, moreover, found that the proportionof infants who could be serologically confirmed as having been fully vaccinated was much lower than what was being officiallyreported (Nardone et al., 2008).Alternative approaches to HBV vaccinationNot all EU countries approach HBV immunization in the same way. The UK, Ireland, the Netherlands, Denmark, Finland, Iceland,Norway, and Sweden have adopted targeted vaccination strategies (Rantala & van de Laar, 2008) in which only those who areconsidered to be at high risk (healthcare workers and others with possible occupational exposure, injecting drug users (IDUs), thoseliving with family members with HBV, men who have sex with men (MSM), sex workers, people with hemophilia or regularly receivingblood and blood products) are routinely vaccinated. Critics of this approach have pointed out that because more than 30% of thoseliving with acute HBV infection have no identifiable risk factors, targeted population approaches are likely to miss a sizeable proportionof those for whom vaccination would be justified (Zanetti et al., 2008). Migrants from high or intermediate HBV prevalence countrieshave not been identified within this approach.HBV vaccination and migrantsAfter many years of significant and well-documented success in bringing down rates of common childhood infections such as pertussis,mumps and measles, there is now a growing resistance to childhood vaccination, including for HBV vaccination. The situation is nothelped by the fact that there is no standardized approach to vaccination of migrants and/or their children, and while most countriesprovide health care coverage for migrants once they acquire residency status, the time conditions required for residency differbetween countries, and many migrants tend to see emergency wards as their main source of health care (Carballo et al., 2004).In EU countries where irregular (undocumented) migrants have the right to emergency or essential health care, HBV immunizationis not covered (Zanetti et al., 2008). Poverty, distance and poor transport, low levels of parental education in the case of children,and cultural, linguistic and religious differences are all important factors in determining the extent to which migrants can and doaccess vaccination(Rechel et al., 2009).1 Individuals vaccinated in infancy (3 doses at 0, 1, and 6 months of age) gain almost 100% immunity and those vaccinated as adolescents or ashealthy young adults gain almost 95% immunity (Zanetti et al., 2008b). In 1991 WHO put out a call for worldwide universal HBV vaccination.88

Administrative barriersAdministrative rules and procedures can be important barriers to migrant access and use of health care services (Carballo et al.,2004). Complex, time-consuming processes that also call for work and residence permits, health insurance papers and permanentaddresses which irregular migrants can rarely provide are all reasons for not continuing with health care seeking (ibid). In somecases migrants simply do not have the pre-requisite number of years of residence to have full access to health services other thanessential (emergency) care that excludes immunization; in other cases it can be a problem of incomplete or non-existent medicalinsurance because employers do not fulfil their obligations with migrants who do not understand their rights (ibid). For all thesereasons migrants use public health care facilities far less than the general public (Romero-Ortuno 2004). Experience in the area ofHIV/AIDS also suggests that charges for health care treatment can be off-putting for low-income migrants (Stanciole, Huber, 2009).In some EU countries the introduction of more difficult-to-meet requirements for acquiring refugee status is also preventing manypeople from benefitting from immunization initiatives (Stanciole, Huber, 2009).Socio-cultural barriersAmong the many socio-cultural barriers to the care and treatment of migrants, the issue of health literacy has emerged as particularlyimportant. Health literacy, including the capacity of people to understand the system and be able to work their way through healthservice networks presents difficult challenges for people who are unfamiliar with health services in host countries (Newman,Papadopoulos and Sigsworth, 2006; Carballo et al., 2008). Proximity of health care services and the timing of service openings canalso be important challenges to migrants who do not live near hospitals (which are visible) and do not know or who are not inprinciple eligible to access primary care physicians, who in any event may be less visible and less well known (Carballo et al., 2004).In many cases the work schedules of low-income migrants who often have to take two and three jobs to accumulate a decentincome are so time-demanding that they cannot meet health care facility opening hours. Their “right” to take time off for medicalreasons is often not known to them and rarely explained by employers, many of whom are irregular domestic employers (ibid).For many female migrants, cultural attitudes to gender in their countries of origin and in the migrant communities they live in canalso be restrictive of health care seeking behavior and be poorly understood by health care personnel (Mumtaz et al., 2006). Health careseeking behavior is also affected by previous experience in countries of origin where there may have been a tendency or need torely on traditional medical practioners than western-type medicine (Quesadaa and Heller 1977). Mistrust of health care personneland clinical trials that are sometimes seen as dangerous for migrants has also been highlighted as an obstacle (Mahwash, Atkinand Leese 2004).Health belief barriersHow people perceive health and disease, and what they believe can be done at an individual and health system level, to influencethem is what determines in great part the extent to which people are willing or encouraged to engage in health promotion andprotection. The mix of factors involved have been subsumed in a variety of models that essentially build on the model proposed byRosenstock (1988) and which include five constructs representing perceived threat and the net benefits of engagement: (a) perceivedsusceptibility, (b) perceived severity, (c) perceived benefits, (d) perceived barriers and (e) self-efficacy.(a) The initial concept of perceived susceptibility is a complex one in which the individual must be able to place him or her in abroader context of what is known about the incidence and prevalence of viral hepatitis and be aware of the factors contributingto it. For example, knowledge of the role played by sex and injection as well as other skin piercing acts is essential. In the caseof migrants who have not been previously been reached with information which they can understand and who are not reachedin the countries they re-settle in, the issue of perceived susceptibility may be void. This is especially so given that viral hepatitiscan be asymptomatic.89

(b) The concept of severity, that is to say a person’s personal assessment of the seriousness of the problem and its potentialconsequences, calls for people to have been able to identify a disease such as HBV or HCV. However, in cultures where viralhepatitis is very prevalent and where services to deal with it remain undeveloped, it is quite possible that viral hepatitis has notbeen characterized and is hence not known by people in a way that would permit or encourage them to take action to eitherprevent it or diagnose and treat it.(c) As far as perceived benefits are concerned, much may depend on the experience the person has previously had with healthcare, especially preventative initiatives. In the case of people coming from poor socio-economic countries and communities,which is likely in the case of many migrants, there may not have been good or any experiences that can guide the person.(d) The concept of perceived barriers, that is to say the assessment by people of what might prevent them acting on informationand advice given to them, requires that people be able to distinguish between real and perceived barriers. In the case of viralhepatitis, especially HBV vaccination and screening for both HBV and HCV, a number of real and perceived barriers canimmediately be identified. Among the real ones is the fact that health services with a viral hepatitis component may not exist,or that if they exist they do not have ready access to for reasons such as medical insurance as outlined above. Among theperceived barriers might be the idea that vaccination is dangerous and that its purpose is not what is said by the health careproviders.(e) The concept of self efficacy has been shown to be a major one in the treatment of chronic diseases in migrant populations(Carballo et al., 2009). Some people have simply not been encouraged in their up-bringing to “take their lives in their hands”and do not have a body of experience to suggest that they can intervene to change the course of a disease such as viralhepatitis. Thus even if and when all the options for personal action are presented to people, some may sense a loss of power(locus of control) to do what is required. In poor educated people originating from developing countries, this is not uncommonand can undermine compliance/adherence capacities.Other factorsDemographic variables such as age, gender, ethnicity and occupation can be mediating factors. Young migrants and the childrenof migrants, for example, are typically more able to converse in the language of host and may be able to benefit from supportivehealth promotion infrastructures if these exist. Men are freer in some cultures to participate in health initiatives than women (Foley,2005), and migrants (including cleaners) working in and around health care facilities may feel more at ease with personal healthaction requirements than people who are unfamiliar with health care environments and the range of activities that go on in them.Linguistic barriersLanguage and linguistic differences are paramount in the operational relationship between health care providers and patients(Kang, Kahler, and Tesar 1998; Bischoff et al., 2003; Giardano et al., 2009; Hwang et al., 2009; Wu et al., 2009; Tran, 2009;Cooper 2010). Where there is no common language and where there is no competent cultural intermediary, discussions aboutsymptoms, implications of treatment options, and need for follow-up may lead to nothing because while both parties may feel theyhave communicated well, in fact there may have been little exchange of real or correct information Carballo et al. (2009).90

PoliciesLack of standardized approachesAlthough viral hepatitis has come to constitute a major threat to health in the EU, the region is still characterized by a lack ofstandardized policies and practices, especially with respect to migrants. As indicated earlier, while 20 countries say they haveuniversal hepatitis B vaccination (including for at risk groups), seven others only provide routine HBV vaccination to high risk groups(Johansen et al., 2010) and irrespective of their origin, migrants do no appear to be targeted.RomaThe need to out-reach to special groups such as the Roma has been taken up by some countries such as Bulgaria where universalinfant HBV immunization was started in 1991. The fact that the UN Development Program (UNDP) is having to give assistancenevertheless suggests that providing services to the Roma (UNDP, 2004) is still seen as a responsibility of others. Certainly there islittle evidence from other countries with large Roma populations that they are are being given special viral hepatitis attention.ImmunizationIn some countries children of asylum seekers are eligible for HBV vaccination, and in others adult asylum seekers are also eligible(UNHCR, 2005; Peters, 2006; Norredam, 2007) but again, the policies vary considerably and are often so rigid with respect to thelegal conditions that have to be met that the right to coverage is not clear to health care providers or potential beneficiaries (Gyarmathy2004; Vuorenski, 2008). In other situations regulations concerning refugees as opposed to asylum seekers appear to make itimpossible for the latter to benefit from viral hepatitis initiatives (Stranberg-Larsen, 2007).Administrative barriersThere are also situations in which policies may be having a counter productive effect. Forced isolation of asylum seekers, for example,is not likely to encourage voluntary participation in HBV prevention programs (Austria TODAY, 2008). Similarly, some countriesrequire irregular migrants seeking health care to do so through national immigration services, and these are in turn required toreport their presence to the police, thus making the process highly unlikely to attract involvement in viral hepatitis or other programs(Hansen, 2007).OpeningsIn countries where irregular (undocumented) migrants are not covered by national health insurance, there are often laws regardingthe control of infectious diseases that are considered to be dangerous for the larger public, and where these exist, they can providean opening for HBV and/or HCV prevention and treatment to be extended to migrants and others who might not otherwise be ableto benefir from public health initiatives (Bryndova 2009; Andri et al., 2008).91

ConclusionsConstraintsIn preparing this report on the link between migration and viral hepatitis we have had to confront a number of limitations that haveplagued much of the research on the dynamics of migration and health. Because most EU countries have been net exporters ofpeople and until recently have not been faced with large-scale in-migration, many countries do not have precise data on the numberof people who might fall under the definition of migrants, their countries of origin, and the length of their stay. In some EU countrieshealth information systems do not even identify people by migration status and instead use self-identification by ethnic minoritystatus as a surrogate indicator. The field of migration and health has also suffered from the problem of how what few studies havebeen done have defined migrants. What data are available sometimes come from studies that have used different definitions anddifferent concepts of the dynamic nexus of migration and health. The problem of unofficial and unrecorded migration, which isthought to be increasing, also poses a major obstacle to understanding how the process of population movement is affecting healthin the EU region, as indeed elsewhere.Overall findingsDespite lacunae in data there is nevertheless considerable evidence that migrants are arriving in the EU in greater numbers andare increasingly coming from high/intermediate viral hepatitis endemic regions. Because these people are more likely to presentwith HBV and/or HCV than people from low endemic regions and far more than nationals in EU countries, they call for far moreattention than has been given to them to date. The fact that in two countries that were identified in the review, researchers haveconcluded that the overall epidemiological profile of HBV and HCV in those countries is not being affected should not be taken tomean that action is not required. These may be a very country-specific findings, and even so the burden on health care serviceswill inevitably becoming heavier everywhere as migrants with HBV and/or HCV morbidity present for treatment in greater numbersthan national do. Nor should the fact that there is little or no evidence of spread of viral hepatitis from migrant groups to hostpopulations be taken to mean that this is not occurring. The social networks of many migrants may be such that there is littleopportunity for transmission, but the growing industry of trafficking of migrants into the sex industry calls for special attention.ScreeningFor both ethical and pragmatic public health reasons the cycle of transmission in migrants must be broken, and HBV and HCV inpeople from high prevalence countries must be diagnosed and treated early and efficiently. Migrants of all kinds have the rightto be offered means of improving their health and from a public health point of view this is essential. In this regard, screeningof migrants for viral hepatitis probably deserves to be considered. Much is already known about the prevalence of viral hepatitis inthe countries that migrants are coming from, and certainly enough is known to provide the basis for screening policies and practicesthat could target migrants according to the countries they come from or have passed through.Avoiding stigmaIf screening is to be proposed, however, it must be done in an evidence based way that defines when and how often screeningshould be offered. It must also be done in way that respects human rights. Targeted screening must not stigmatize people becauseof national origin or because of viral hepatitis status. At all times it must be done in ways that encourage voluntary participation inboth the screening and then the treatment that must follow. In this regard, much can be learned from the work that has been donein the area of HIV/AIDS and voluntary counselling and testing (VCT). More out-reach in the form of culturally competent informationand counselling is also called for if HBV and HCV awareness is to be improved in migrant groups and if any stigma associated withviral hepatitis is to be reduced within migrant populations.92

PreventionPrevention of viral hepatitis will also have be highlighted far more than it has been to date, and steps will have to be taken to ensurethat the children of migrants and Roma are not being missed by otherwise universal immunization programs. There is a feeling thatchildren of migrants and Roma are possibly being overlooked missed because immunization policies and practices do not addressthe special logistical needs of mobile populations that are at times ill-defined, marginalized from mainstream society and havedifferent expectations with regard to health and health care. In general far more attention needs to be given to providing migrantswith information and education on viral hepatitis in languages and in ways that are attractive and understandable. Reaching migrantson entry and through the communities they settle using local leaders deserves to be tried.Tailored approachesIn general the evidence calls for more and better tailoring of out-reach programs that address the psychosocial, cultural, legal andeconomic factors that affect the capacity of migrants to participate in and benefit from public health initiatives. For migrants comingfrom countries of high and intermediate viral hepatitis prevalence, HBV and HCV may not mean the same as it does to people inEuropean host countries, and attitudes to compliance in testing and treatment may be very different. In some cases, however,the problem is not simply one of migrant cultures but rather one of a broader denial of viral hepatitis in the general public.This must be overcome before anything else if national strategies on migrants are to be developed.Technical assistanceAs the international community moves forward to respond to the challenges of preventing and treating HBV and HCV in migrantpopulations, support to some governments will be required if they are to adopt international standards and operating procedures tothe challenge of viral hepatitis in the context of migration. That support should include support in assessing their national situationsbetter and more consistently, sharing common reporting and databases, using common guidelines on action including preventionand treatment, screening and reporting. It will also call for sensitizing public health and clinical personnel to the many complexitiesof the migration-health nexus.Who are migrantsFinally it must be remembered that migrants are a heterogeneous group. They come from different countries and regions of theworld with very different viral hepatitis profiles. They also come from different socio-economic backgrounds and have differenthealth and health care histories. Their levels of health literacy may also differ and while some may require targeted assistance,many others will not require more than host populations need in terms of viral hepatitis prevention and treatment.93

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Sponsoring PartnersFor questions with regard to the Conference or its ongoing programme please contact:Prof. Angelos HatzakisCo-Chair of the Steering GroupEmail: ahatzak@med.uoa.grcopied to:Marilyn ClarkSecretary to the Steering GroupEmail: clarkme@pt.luMobile Telephone: (+352) 621 367 532

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