1. Epidemiological surveillance of HIV infection & AIDS in Europe Advanced course in epidemiology of infectious diseases EpiTrain II - Tallinn, Estonia, 7 September 2005 EuroHIV Department of Infectious Diseases Institut de Veille Sanitaire (InVS) EuroHIV@invs.sante.fr

2. HIV/AIDS surveillance in Europe: EuroHIV Started in 1984 Covers 52 countries of the WHO EURO Region WHO and UNAIDS Collaborating Centre Formerly, the European Centre for the Epidemiological Monitoring of AIDS - transferred to InVS in 1999 EU funded Integration of HIV/AIDS surveillance in European CDC to be defined

3. Presentation outline 1.Second generation HIV surveillance 2.Review of the epidemiological methods used to monitor the HIV epidemic in Europe Case reporting HIV prevalence 3.Description of recent epidemiological trends 4.Example of a national HIV surveillance system Norway (P. Aavitsland)

4. A global view of HIV infection 39.4 million people [range: 35.9-44.3 million] living with HIV at end 2004

5. UNAIDS/WHO classification of epidemic states Low level Concentrated Generalised Source: UNAIDS

6. Low level Principle: although HIV infection may have existed for many years, it has never spread to significant levels in any sub- population. Infection is largely confined to individuals with higher risk behaviour: e.g. sex workers, drug injectors, homosexual men. This suggests that networks of risk are rather diffuse (low levels of partner exchange or sharing of drug injecting equipment), or a very recent introduction of the virus. Source: UNAIDS

7. Concentrated Principle: HIV has spread rapidly in a defined sub-population, but is not well-established in the general population. This suggests active networks of risk within the sub-population. The future course of the epidemic is determined by the frequency and nature of links between highly infected sub- populations and the general population. Source: UNAIDS

8. Generalised Principle: in generalised epidemics, HIV is firmly established in the general population. Although sub-populations at high risk may continue to contribute disproportionately to the spread of HIV, sexual networking in the general population is sufficient to sustain an epidemic independent of sub-populations at higher risk of infection. Source: UNAIDS

9. UNAIDS/WHO: classification of epidemic states using numerical proxy Low Level HIV prevalence has not consistently exceeded 5% in any defined sub-population Concentrated HIV prevalence consistently >5% in at least one defined sub- populationbut <1% in pregnant women in urban areas Generalised HIV prevalence consistently >1% in pregnant women Source: UNAIDS

10. Classification of epidemic states in the WHO European Region: low, concentrated Low level (<5%) Concentrated (>5% in at least one defined sub population but <1% in pregnant women ? ? ? ? ? ? ? EuroHIV

11. Second generation HIV surveillance Objectives Better understanding of trends over time Better understanding of the behaviours Surveillance on sub-populations at highest risk of infection Flexible surveillance (moves with the needs & state of the epidemic) Better use of surveillance data for prevention and care Source: UNAIDS/WHO

12. HIV estimates Biological Indicators for HIV/AIDS surveillance Behavioural Other data

13. Data collection methods for HIV surveillance Biological surveillance HIV / AIDS case reporting – issues: AIDS case definition & important role in advocacy – integration in the communicable disease reporting system Prevalence surveys Sentinel serosurveillance in defined sub-populations Regular HIV screening of donated blood / occupational cohorts or other sub-populations HIV screening of specimens taken in general population surveys or special population surveys

14. HIV estimates Biological Indicators for HIV/AIDS surveillance Behavioural Other data

15. Data collection methods for HIV surveillance Behavioural surveillance General population-based behavioural surveys most appropriate tool for tracking changes in exposure to risk of HIV infection in the general population over time Ex. telephone surveys on sexual behaviour Sub-population-based behavioural surveys – MSM – IDU – Sex workers

16. HIV estimates Biological Indicators for HIV/AIDS surveillance Behavioural Other data

17. Data collection methods for HIV surveillance Other sources of information Death registration STI indicators & other biological markers of risk

18. Major indicators used in HIV surveillance 1. Biological indicators Estimation of HIV prevalence Number of adult/paediatric AIDS cases 2. Behavioural indicators Sex with a non-regular partner in the last 12 months Condom use at last sex with a non-regular partner Youth: age at first sex Drug injectors: Reported sharing of unclean injecting equipment Sex workers: Reported number of clients in the last week 3. Socio-demographic indicators Age, sex, socioeconomic & educational status, indicator of residency or migration status, parity, marital status

19. Presentation outline 1.Second generation HIV surveillance 2.Review of the epidemiological methods used to monitor the HIV epidemic in Europe Case reporting HIV prevalence 3.Description of recent epidemiological trends 4.Example of national HIV surveillance system Norway (P. Aavitsland)

20. European AIDS and HIV case reporting AIDS case reporting Since 1984 (all countries) HIV case reporting Implemented at national level since late 1980s in most countries (not yet implemented in Italy and Spain) Since 1999 at European level HIV infection 1 st HIV diagnosis AIDS Death among reported AIDS cases Source: Hamers, JAIDS 2003; 32 Suppl:S39-48

21. HIV / AIDS reporting Definition of confidentiality, anonymity Confidential: told in confidence; imparted in secret (Webster dictionary) Anonymous: with no name known or acknowledged (Webster) Personal identifying information at national level –Name –Social security number –Other: genetic code, finger print, photograph, ancillary data (age & sex) may be identifying in small areas, etc. No identifier at European level

22. HIV / AIDS reporting Definitions (cont.) Anonymous unique identifier –Reproducible: the same individual must always have the same identifier –Unique: no two individuals must have the same identifier

23. HIV / AIDS Case reporting AIDS Case definition 1982 (initial) CDC AIDS case definition 1985 CDC Revision AIDS case definition 1987 CDC Revision AIDS case definition 1993 CDC Revision AIDS case definition (USA) 1993 European AIDS case definition (Europe, Canada, Australia, Japan) Source: European Centre for the Epidemiological Monitoring of AIDS. HIV/AIDS Surveillance in Europe: Quarterly report 37; March 1993 1993 European AIDS surveillance case definition One of the 28 specified opportunistic illnesses (OI) Positive test for HIV infection Does not include CD4 count <200/ L without OI

24. HIV / AIDS Case reporting List of AIDS indicator diseases Burkitt's lymphomaCandidiasis of bronchi, trachea, or lungs CMV disease or retinitisCoccidioidomycosis CryptococcosisCryptosporidiosis Extrapulmonary tuberculosisHerpes simplex virus disease HIV encephalopathyHistoplasmosis HIV wasting syndromeImmunoblastic lymphoma IsosporiasisInvasive cervical cancer Kaposi's sarcomaLymphoid interstitial pneumonia Lymphoma, not specifiedMultiple or recurrent bacterial infections Mycobacterium avium complex or M. kansasii Mycobacterium, other or unidentified sp. Oesophageal candidiasisPneumocystis carinii pneumonia Primary lymphoma of brainProgressive multifocal leukoencephalopathy Pulmonary tuberculosis Salmonella septicaemia Recurrent pneumonia Toxoplasmosis Added in 1993 case definition in children <13 years

25. HIV / AIDS Case reporting Data collection & management 1.Key data extracted at national level - according to standard specifications - for each notified case 2.An anonymised version of the national dataset is sent to EuroHIV periodically. Systematic updates of data for previous years 3.Data are validated for inconsistencies, and clarifications may be requested from the correspondent 4.The finalised national datasets are merged into a common database.

26. HIV / AIDS Case reporting Databases Databases of anonymous and individual data reported every 6 months: ENAADS:European Non-Aggregate AIDS Data Set (52 countries, started in 1990) EHIDS: European HIV Infection Data Set (33 countries, started in 1999) Database on aggregate data on new HIV cases (countries without individual datasets )

27. HIV/AIDS Case reporting EHIDS data file specification (1) CASENO: Case number given by the country COUNTRY: Country of report SEX: 1 = male, 2 = female, 9 = unknown BIRTHYR: Year of birth HIVYR: Year of HIV diagnosis HIVQR: Quarter of HIV diagnosis REPYR: Year of report REPQR: Quarter of report HIV_TYPE: Type of virus STAGE: Clinical stage at time of HIV diagnosis

28. HIV/AIDS Case reporting EHIDS data file specification (2) TRM_CAT: Transmission category TRM_HET: Transmission sub-category of heterosexual contact cases TRM_MOTH: Mother's transmission category PREVPOS: Positive HIV test >1 year prior to the test being reported INFECTYR: Probable year of infection with HIV AIDSYR: Year of AIDS diagnosis AIDSQR: Quarter of AIDS diagnosis DEATHYR: Year of death DEATHQR: Quarter of death ORIGIN: Country or subcontinent of origin

29. HIV/AIDS Case reporting Transmission groups Homo/bisexual male Injecting drug user Haemophiliac Transfusion recipient Heterosexual contact – Country with a generalized HIV epidemic – High risk partner (HBM, IDU, haemophiliac, transfusion recipient…) – Partner from a country with a generalized epidemic Mother-to-child transmission Nosocomial infection

30. Complementary information (qualitative data) Second choice for countries without individual data Regular standard questionnaire and tables to fill-in Extensive instructions and definitions for reporting Occasional surveys (e.g. TB/HIV, 1995, 2003) HIV/AIDS Case reporting Aggregate data (1)

31. HIV/AIDS Case reporting Aggregate data (2)

32. Strength & limitations of HIV case reporting Dependent on diagnosis (testing and care seeking) and reporting patterns Need for effective methods to eliminate double reports (chronic disease) Strengths Limitations Overall picture of the disease burden (population-based) Dynamic picture of the epidemic EuroHIV

33. Presentation outline 1.Second generation HIV surveillance 2.Review of the epidemiological methods used to monitor the HIV epidemic in Europe Case reporting HIV prevalence 3.Description of recent epidemiological trends 4.Example of national HIV surveillance system Norway (P. Aavitsland)

34. HIV prevalence Sentinel serosurveillance (1) PopulationInstitutionRepresentativeness STI patientsSTI clinicsNot a reliable indicator of programme impact IDUTreatment clinics, prisonsScope for sentinel sites limited Sex workersHealth clinics in red light districts Regular screening for STI Excellent, but rare sentinel site Men who have sex with men Health clinics in gay communitiesDoes not exist outside the communities WomenAntenatal clinicsMost accessible cross section

35. HIV prevalence Sentinel serosurveillance (2) Populations regularly screened for HIV infection Donated blood units or blood donors Occupational cohorts – factory workers – migrant workers – military

36. HIV prevalence Cross-sectional serosurveys in sub-populations at risk Attempts to get around selection bias associated with sentinel surveillance Sampling usually household-based Requires informed consent To track HIV prevalence among people at high risk of infection Require the informed consent of participants General population-based HIV serosurveys:

37. HIV prevalence assessment - EuroHIV Data updated once a year & compiled in the European HIV prevalence database. Aggregate data on HIV prevalence in various populations: IDU, sex workers, MSM, pregnant women, blood donors, STI patients. Information recorded: - characteristics of the population tested - sampling & testing methods - numbers of subjects tested and found to be HIV+ EuroHIV

38. European HIV Prevalence Database

39. Strength & limitations of HIV prevalence assessment Snapshot picture of the epidemic in specific populations Issues of representativity Difficulty to interpret trends StrengthsLimitations EuroHIV

40. Presentation outline 1.Second generation HIV surveillance 2.Review of the epidemiological methods used to monitor the HIV epidemic in Europe Case reporting HIV prevalence 3.Description of recent epidemiological trends 4.Example of national HIV surveillance system Norway (P. Aavitsland)

41. Definition of geographic areas used in this presentation West 401 million pop. East 287 million pop. Centre 193 million pop.

42. Description of recent epidemiological trends HIV infections AIDS cases

43. HIV infections newly diagnosed per million population by geographic area, WHO European Region, 1993-2004 Excluded: Andorra, Austria, France, Italy, Malta, Netherlands, Norway, Portugal, Spain in West; Bulgaria, Croatia in Centre: national data not available for the whole period Update at 31 December 2004 East West Centre EuroHIV

44. Estimation of HIV incidence by HIV incidence transmission group, European Union (15 countries) * estimated by back-calculation HIV * AIDS Homosexuals IDU Heterosexuals Source: Downs et al. EuroHIV

45. HIV cases per million 200 + 100 - 199 20 - 99 < 20 Not available Update at 31 December 2004 HIV infections newly diagnosed: cases reported in 2004 per million population WHO European Region 9 NA 16 58 14 79 95 7 12 7 54 568 25 87* 32 24 40 7 17 89 48 45 30 141 39 131 3 43 84 72 17 280 13 239 3 13 48 109 31 3 0 212 122 76 10 31 NA *Estimate based on data for half a year EuroHIV

46. HIV cases per million 50 + 30 - 49 10 - 29 < 10 Not available Update at 31 December 2004 HIV infections newly diagnosed: cases reported among homo/bisexual men in 2004 per million population, WHO European Region 0.3 14 0 0.5 0 18 0.7 6 3 27 8 16* 1 11 12 4 7 13 10 0.1 0 3 1 44 0 5 0 32 0.5 31 0.3 0.8 2 32 0.2 9 * Estimate based on data for half a year NA 10 24 8 NA 0.3 0 3 0.2 EuroHIV

47. Update at 31 December 2004 HIV cases per million 50 + 30 - 49 10 - 29 < 10 Not available HIV infections newly diagnosed: cases reported among injecting drug users in 2004 per million population, WHO European Region 0 14 11 7 36 2 1 0.9 0.7 2 2 2* 21 1 0.8 0.2 3 17 9 28 24 63 30 7 0 5 43 3 5 99 0 72 0 0 3 11 17 0.01 0 120 2 31 1 0 NA * Estimate based on data for half a year EuroHIV

48. HIV cases per million 50 + 30 - 49 10 - 29 < 10 Not available 8 27 5 4 39 5 4 3 23 11 20* 10 7 9 1 7 38 23 13 6 29 7 76 3 20 40 25 0.9 141 8 31 0.4 3 28 57 2 2 0 84 69 8 3 21 NA HIV infections newly diagnosed: cases reported among heterosexuals in 2003 per million population, WHO European Region * Estimate based on data for half a year Update at 31 December 2004 EuroHIV

49. HIV infections newly diagnosed reported in 2004: characteristics of cases by geographic area - WHO European Region * No data for Italy, Norway and Spain; partial data for France and Netherlands Except Romania (nosocomial ~ 1990) & Poland (IDU); heterosexual in Balkan countries, homosexual elsewhere West*CentreEast Number of diagnosed cases 20 2291 59749 929 Highest rate per million population 280.5 (Portugal) 31.0 (Cyprus) 568.8 (Estonia) Aged < 30 years old (%) 28%40%64% Females (%)35%30%40% Predominant transmission mode HeterosexualLow level epidemic Drug injection

50. AIDS incidence per million population, by geographic area, WHO European Region, 1986-2004 Data adjusted for reporting delays France, Monaco, Norway, San Marino, Bulgaria, Kyrgyzstan, Russia, Uzbekistan excluded: national data not available for the whole period Update at 31 December 2004 HAART East West Centre EuroHIV

51. The four most common AIDS indicative diseases (%) among AIDS cases diagnosed in 2004 West, Centre and East, WHO European Region Update at 31 December 2004 0 10 20 30 40 50 60 WestCentreEast % of cases TuberculosisP. carinii pneumonia Oesophageal candidiasisHIV wasting syndrome EuroHIV

52. 2 0 7 10 3 8 11 0.7 3 1 10 20 4 6 7 2 10 7 5 29 5 40 6 26 1 3 17 12 5 80 11 0.4 4 43 8 42 0 0.7 0 53 14 5 NA AIDS cases per million 50 + 20 - 49 5 - 19 < 5 Not available AIDS cases diagnosed in 2004 per million population WHO European Region Data adjusted for reporting delays Update at 31 December 2004 EuroHIV

53. East Population: 287 million EuroHIV

54. Ukraine Latvia Belarus Russian Federation Estonia Cases per million HIV infections newly diagnosed per million population 1994-2004, selected countries, eastern Europe Lithuania Update at 31 December 2004 EuroHIV

55. Kazakhstan Belarus Uzbekistan Cases per million HIV infections newly diagnosed per million population 1994-2004, selected countries, eastern Europe Moldova Update at 31 December 2004 EuroHIV

56. Cases per million HIV infections newly diagnosed per million population 1994-2004, selected countries, eastern Europe Kyrgyzstan Georgia Azerbaijan Armenia Tajikistan Update at 31 December 2004 EuroHIV

57. Homo/bisexual men Injecting drug users Persons infected heterosexually HIV infections newly diagnosed by transmission group, 1994-2004, eastern Europe Risk not reported * * 96% cases reported by Russian Federation Update at 31 December 2004 EuroHIV

58. Homo/bisexual men Injecting drug users Persons infected heterosexually AIDS cases by transmission group 1988-2004, eastern Europe Data adjusted for reporting delays Update at 31 December 2004 EuroHIV

59. Ukraine Latvia AIDS cases per million population in selected countries, 1988-2004, eastern Europe Data adjusted for reporting delays Moldova Lithuania Belarus Estonia Update at 31 December 2004 EuroHIV

60. East: Baltic States Population Lithuania: 3.4 million Latvia: 2.3 million Estonia 1.3 million EuroHIV

61. Latvia Estonia Cases per million HIV infections newly diagnosed per million population, Baltic States, 1994-2004 Lithuania Update at 31 December 2004 EuroHIV

62. Homo/bisexual men Injecting drug users Persons infected heterosexually HIV infections newly diagnosed by transmission group, 1994-2004, Lithuania Total Update at 31 December 2004 EuroHIV

63. Homo/bisexual men Injecting drug users Persons infected heterosexually HIV infections newly diagnosed by transmission group, 1994-2004, Latvia Total

64. Homo/bisexual men Injecting drug users Persons infected heterosexually HIV infections newly diagnosed by transmission group, 1994-2004, Estonia Total Data by transmission group not available after 2002 Update at 31 December 2004 EuroHIV

65. Latvia AIDS cases per million population in the Baltic States, 1988-2004 Data adjusted for reporting delays Estonia Lithuania Update at 31 December 2004 EuroHIV

66. AIDS cases, deaths, and persons living with AIDS, by year, 1984-2004, European Union* Data adjusted for reporting delays * France and Netherlands excluded: data not available for the whole period Update at 31 December 2004 EuroHIV

67. Prevalence data Description of recent epidemiological trends

68. HIV prevalence among high risk populations by geographic area, WHO European Region, 2000-03 WestCentreEast Injecting drug users <5% in 11 countries >20% in Mediterranean countries <2% in all countries except Poland (>20%) 5% in some countries Up to 60% in cities in Ukraine & Russia Homosexual men 5-15%3-10%0-5% Sex workersMostly <1%<1%Up to 15% STI patients1-2%<0.1%0-2% EuroHIV

69. 0 10 20 30 40 1991199319951997199920012003 % HIV+ Belgium (French community, DTC; SR) France (DTC; SR) France (RC; SR) Italy (DTC; SP) Portugal (DTC; DT mean of 3 studies) Spain ( VCT, STI; DT) Spain ( DTC; DT) Switzerland (VCT; DT) Germany (DTC; SR) England & Wales (multiple sites; SP) Poland (VCT, DTC, STI; DT) EuroHIV Update at 31 December 2003 HIV prevalence (%) among injecting drug users: prevalence studies and diagnostic testing, western and central Europe,1991-2003 SR = Self reported HIV status DTC = Drug treatment centres VCT = HIV voluntary counselling & testing centres SP = Seroprevalence studies RC = Residential centres for ex-drug users STI = STI clinics DT = Diagnostic testing Multiple sites = DTC, needle exchange programmes, low threshold services for drug users, street, hospitals

70. Update at 31 December 2003 HIV prevalence (%) among injecting drug users: diagnostic testing studies in countries of eastern Europe, 1993-2003 DTC = Drug treatment centres NEP = Needle exchange programmes VCT = HIV voluntary counselling & testing centres Multiple sites = NEP, DTC, VCT, General practitioners, STI clinics EuroHIV

71. HIV prevalence (%) among female sex workers: prevalence studies & diagnostic testing (DT), western & central Europe, 1992-2002 % HIV+ Spain (6 cities*), STI patients Scotland - DT Rome** Spain (9 cities)** - DT Poland - DT * Alicante, Bilbao, Gijon, Madrid, Oviedo, Pamplona male & female prostitutes; ** most HIV+ are injecting drug users Update at 31 December 2002 Vienna, illegal prostitutes** - DT Prague + 2 regions EuroHIV

72. HIV prevalence (%) among female sex workers: prevalence studies, eastern Europe, 1997-2002 % HIV+ Armenia Saint Petersburg Belarus Riga Vilnius Update at 31 December 2002 Moscow Kaliningrad Riga EuroHIV

73. Conclusion: implications for public health HIV remains a major public health problem in both western and eastern Europe To diagnose and provide effective treatment to all infected persons is a challenge throughout Europe In western Europe, prevention and care must be adapted to reach migrant populations; renewed safer sex campaigns targeted at MSM are needed In eastern Europe, HIV prevention among IDU should be the cornerstone of HIV prevention strategies; at the same time, preventing further heterosexual transmission is critical