What we need to know: The role of HIV surveillance in ending the AIDS epidemic as a public health threat

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3 rd Global HIV/AIDS Surveillance Meeting What we need to know: The role of HIV surveillance in ending the AIDS epidemic as a public health threat Peter D Ghys (UNAIDS) Daniel Low-Beer (WHO) Irum Zaidi (S/GAC) and Jinkou Zhao (Global Fund)

Contents 1. The new paradigm: Fast-Track. Ending the AIDS epidemic by 2030 2. 3 rd Global HIV Surveillance meeting progress since previous meetings 3. What answers do we need from surveillance 4. Objectives and agenda of the meeting Partner Comments: why we need surveillance data

1. NEW PARADIGM: Fast-Track. Ending the AIDS epidemic by 2030

Number of people living with HIV, new HIV infections, and AIDS-related deaths, 1990 2013 2013

Fast-Track: Rapid action = big benefits Decline in new adult HIV infections 5 year window

Fast-Track: Rapid action = big benefits Decline in AIDS-related deaths 5 year window

2. Progress since previous meetings

Key HIV Surveillance Data Points and the Course of HIV Infection, the Future HIV infection Advanced HIV Death Behavioral and STI Population-based Surveys* Most at risk group surveys STI surveillance Incidence Report early infant diagnosis RITAs applied to surveys * Epidemics where infection is driven by the general population Prevalence, behaviors, morbidity HIV case reporting (or advanced HIV case reporting) ANC sentinel surveillance* Population-based Surveys with HIV testing* Most at risk group sero-surveys ART outcomes HIV drug resistance Mortality Vital registration and VA Surveys with VA

Recent Infections 2004 Recommendations Progress by 2009 Progress by 2015 Operational research of assays Operational research with BED -- overestimation is problem Adjustment formula developed Multiple newer assays have been assessed including LAg Insight that algorithms are needed to limit false recency Build capacity to select appropriate populations and interpret results Multiple trainings on use of BED International Working Group formed Multiple assays being considered Still don t have ideal method UNAIDS/WHO technical update published February 2015 CEPHIA/FIND Limited field application so far of new assays and algorithms

National Population Based Surveys with HIV testing 1 2004 Recommendations Progress by 2009 Progress by 2015 Use these surveys to fill gaps in HIV surveillance data Since 2000, 25 countries in Africa conducted these surveys Data used to fill gaps and improve estimation process Between 2000 and 2014, 39 countries in sub- Saharan Africa and 8 in other regions have conducted these surveys Expanding size and biological assays for more information with greater granularity

Countries with at least one national population based survey with HIV testing, 2000 2014 Viet Nam (Hai Phong province only) Indonesia (Papua province only)

National Population Based Surveys with HIV testing 2 2004 Recommendations Progress by 2009 Progress by 2015 Do not conduct on a regular basis but could do every five years. Do only in countries with relatively high HIV prevalence rates Some countries conducted more that one survey Countries with HIV prevalence <5% conducted surveys 2, 9, and 23 countries have conducted 4, 3 and 2 surveys, respectively. Have protocols reviewed by a national ethical review board. Surveys reviewed by ethics board, new ethical challenges on returning HIV test results Recent surveys have asked participants about HIV and ART status, and included incidence assay algorithm, viral load test G July 15 Ethical consensus that HIV test results be returned G 13

Countries in Africa that have conducted multiple national population based surveys with HIV testing since 2000 Number of national population based surveys 4 3 2 1 0

Use of PMTCT and VCT data 1 2004 Recommendations Progress by 2009 Progress by 2015 Evaluate the utility of VCT data for surveillance and standardize protocols for analysis Expand use of PMTCT service data to complement ANC based surveillance Several evaluations of PMTCT and ANC sentinel surveillance data but problem lies in quality of PMTCT data New emphasis on using routinely available data (e.g. new HIV diagnoses) for surveillance and modelling G 13 Several assessments to compare HIV prevalence in ANC to HIV prevalence in PMTCT, showing issues with diagnostics, surveillance algorithms and data quality G 13

Use of PMTCT and VCT data 2 2004 Recommendations Progress by 2009 Progress by 2015 Develop longitudinal record keeping be developed for better linkages to care Longitudinal record keeping developed in some clinics Service data still problematic for surveillance use Longitudinal data : Will need to build electronic systems: large number of diagnoses, clinical status over time, & unique identifiers

Linking Biological and Behavioral data 2004 Recommendations Progress by 2009 Progress by 2015 Ensure surveillance can contribute to understanding of epidemic dynamics Greater linkage of behaviors to HIV status through increased population based surveys and MARP surveys with HIV testing Consensus that household surveys and IBBS collect both behavioural data, and HIV and virological status Encourage data linkage for triangulation and integrated analysis Several countries have done triangulation and more are planned Data use still limited Only few countries have done triangulation Model-based evaluations of incidence reduction done in several countries, e.g. India; WB-coordinated project in 4 countries; planned in 5 countries

HIV/AIDS reporting and measuring impact of ART 1 2004 Recommendations Progress by 2009 Progress by 2015 Develop one AIDS case definition Improve AIDS case reporting system Expand existing TB surveillance system to capture data on HIV infection One HIV case definition developed Little HIV, advanced HIV or AIDS reporting done TB surveillance captures HIV status in some countries New interest in making use of HIV diagnoses data for surveillance in all epidemic settings (e.g. Brazil moved from AIDS surveillance to HIV surveillance). Pilots conducted in Haiti, Senegal, Ethiopia, Kenya. Modeling of incidence based on case reports. Increased number of TB/HIV surveys programmatic data insufficiently captured G 15

HIV/AIDS reporting and measuring impact of ART 2 2004 Recommendations Progress by 2009 Progress by 2015 Capture data from individual patient records at point of entry into care with determination of outcome ART outcomes being assessed using patient records in some facilities Much new research work on ART outcomes insight re mortality among LTFU Improve overall and HIVspecific national-level mortality data in highburden countries Better tools to measure causes of death by verbal autopsy but little improvement in overall mortality systems (e.g. vital statistics) Improved verbal autopsy tools for COD but only few national surveys (SAVVY) or sample systems Strong movement for improving civil registration and vital statistics G 14

3. Consolidated Strategic Information What answers do we need from surveillance?

Consolidating strategic information agree on measures, data and how to use it 1. Consolidated strategic information guide agree measures Know your epidemic, HIV care cascade, Evaluate Impact: Incidence, Mortality Clear results framework and cascade of measures 2. Global Surveillance Agenda data Granular HIV prev., outreach/kp, case reporting, Impact: incidence and mortality Guidance on patient and case reporting 3. Impact reviews use data Global, National, Community programs use real data Guidance on impact reviews and prioritisation

Consolidated Strategic Information Guidance: agreed cascade of strategic information

1. Strategic information: a consolidated framework Strategic information: a consolidate framework 37 2. Global Surveillance Agenda data Summary of 10 indicators for global monitoring of the health sector Know your epidemic Know your epidemic 1 People with HIV 1. HIV prevalence data: Granular and Disaggregated (and costing data) Inputs Inputs 2 3 Domestic finance Prevention by key populations $ 2. Key Population and Outreach HIV CARE CASCADE HIV care cascade 4 5 6 7 8 Know ing HIV status Linkage to care Currently on ART ART retention Viral suppression 90 90 90 3.Case Reporting Patient, Testing, PMTCT Individual and linked Evaluating Evaluate Impact impact 9 10 AIDS deaths New infections 4. Impact: Mortality and Incidence

3. Next steps using the cascade of data 1. Dissemination of consolidated strategic information Surveillance meeting: global and regional sessions Afro regional meeting in June, Euro June, Asia in October 2. Cascade workshops convene 26 countries 90% of countries have real data on their cascades and impact November 2015 and September 2016 Consistent data, surveillance needs, program implications 3. Supporting guidance Patient and case reporting Impact reviews and prioritisation Consolidated Surveillance Agenda 90% of countries have consistent data on SI cascade: Granular HIV prevalence, Outreach and KP, cascade and case reporting, incidence and mortality

1. HIV prevalence: granular and disaggregated

2. Linking our interventions to the epidemic Uganda within district surface of impact

3. Case reporting and linkage to care Case reporting and linkage to community care (TASO) and to death records and funerals

Clinic Services without a real data cascade community and clinics TLB: IS: How many of your patients are affected by HIV About 1/3rd of patients in gastroenterology have HIV TLB: Do you talk to the patient about their condition IS: No, although both the patient and doctor may know that he or she has HIV, we do not mention it, or mark HIV on the medical records. Partly this is due to insurance but also mistrust TLB: So how do patients know what condition they have IS: Often they do not, often they do, but we don t talk about it. For the doctor there is so much paperwork in mentioning AIDS compared to other conditions Community - My mother-in-law asked her, How did the funeral go? - The neighbour said, It went well. - What did she die from? - She had piles. - Oh shame she had piles. Why didn t she consult a doctor? - The neighbour said, She went to the doctor but she still died. - Shame now who will look after the child, at least the grandmother is still alive Then the neighbour went. - That s when my mother-in-law said, AIDS is killing children.

4. Impact reviews using data in programs Thailand impact review

Measuring impact Incidence New infections Direct measures of incidence Using prevalence and incidence data with modelling AIDS-related mortality Measurement reported AIDS-related deaths (facility, cohorts) Vital registration with cause of death Modelling using prevalence, survival with and without ART, ART coverage Impact Evaluation: modeling, program reviews, evaluations

Surveillance data used strategically is a key intervention in ending AIDS Global, national to community level Response focused on the epidemic or not Thailand, Uganda, Cambodia used surveillance data actively Kenya, Zimbabwe basis of national program Community frontier of surveillance data Avahan, key populations, case reporting, key barriers to put data back in community Cascade of services requires the cascade of data

4. Objectives of this meeting Goal: To map out a consolidated global agenda for collecting high quality, relevant HIV surveillance data to prove and improve global and national responses to the HIV epidemic. Specifically, 1.Discuss and Identify surveillance needs including innovations help to focus services, contribute to measurement of service cascade, measure impact 2.Priority gaps to generate and use quality data 3.Consolidate a surveillance agenda for the next 5 years: few, common priorities

Overview of this meeting: thematic sessions 1 1. HIV surveillance: country perspectives on sustainable measurements 2. HIV incidence surveillance 3. Mortality surveillance 4. Household-based general population surveys 5. Key populations (1): Surveys, (2): Size Estimation 6. HIV Surveillance among adolescents at higher risk of HIV

Overview of this meeting: thematic sessions 2 1. Strengthening routine case surveillance (1) and (2) 2. Biological and Laboratory markers: HIV and links to STI, hepatitis 3. Data use and modelling, sharing, and dissemination 4. What next: Building sustainable capacity 5. STI & Hepatitis: Opportunities for integration 6. Ethics A. Surveillance for informing the HIV cascade workshop B. Parallel regional meetings (5)

Expected outcomes 1. Share progress and innovations in surveillance identify data and methods, how generated, how used, best practices and barriers 2. Identify priority gaps to generate and use data document 2-4 priorities per area and how best to close gaps in countries 3. Share vision of the way forward how fits into an overall surveillance agenda for next 5 years Prioritised surveillance agenda for next 5 years

Partner comments demand for surveillance data Partners view on need for surveillance data Partners view on surveillance priorities? Partners view on use of surveillance data? How will partners fund and support the future surveillance agenda?