Surveillance of HIV & Behaviors Among Drug Users: Observations T. Stephen Jones, MD Inter-country Consultation on Preventing HIV among IDUs Scaling Up: From Evidence to Action April 11, 2007 – Kolkata, India

Topics – 1 Review how the CDC is implementing BSS for drug users in the USA

Topics – 2 HIV surveillance of IDUs; the key role of formative and qualitative studies

Topics – 3 How many IDUs? A precise answer is usually not found

Topics – 4 Two challenges to HIV surveillance (& prevention) for IDUs:  drug user stigma  ignorance of how drugs are used

Topics – 5 HIV Behavioral surveillance of IDUs:  How to do it  Where to do it  What data to collect

National HIV Behavioral Surveillance System (NHBS), USA NHBS monitors HIV risk behaviors among: Men who have sex with men (MSM) Injection drug users (IDU) Heterosexuals at risk of HIV infection (HET) Source: adapted from slides provided by Dr. Abu Abdul-Quader, CDC

National HIV Behavioral Surveillance System, USA: Objectives To assess:  Prevalence of & trends in HIV risk behaviors  Prevalence of & trends in HIV testing behaviors  Use of HIV prevention services Source: adapted from slides provided by Dr. Abu Abdul-Quader, CDC

National HIV Behavioral Surveillance System, 25 City Sites, USA, 2005 Atlanta Ft. Lauderdale Miami San Juan New Orleans Dallas Houston San Diego Los Angeles Las Vegas San Francisco Seattle Denver St. Louis Chicago Detroit Boston New Haven Nassau New York City Newark Philadelphia Baltimore Washington, DC Norfolk Source: adapted from slides provided by Dr. Abu Abdul-Quader, CDC

Overall National HIV Behavioral Surveillance System Strategy, USA Conducted in 12-month cycles (MSM, IDU, HRH) Same 25 cities Standardized questionnaires Consistent eligibility criteria Over 18 years of age Resident of city 500 persons/city will be interviewed during each cycle Source: adapted from slides provided by Dr. Abu Abdul-Quader, CDC

National HIV Behavioral Surveillance System, IDUs, USA Respondent driven sampling (RDS) methodology was selected.

Importance of Qualitative, “Open ended” Studies for HIV Surveillance of IDUs

, Cambodia, 2004 International Rapid Assessment Response and Evaluation, Cambodia, participants 84 Key Informants: Drug users (n = 66) Service providers (n = 11) Policy makers (n = 6) 18 Focus Groups 77 Observations & Mapping CDC provided training & technical assistance Source: adapted from K O’Connell, report of I-RARE in Cambodia

“After the last person finishes injecting, they clean the syringe and needle again and keep them in a brick hole for the next use”. 21 year old IDU Source: adapted from K O’Connell, report of I-RARE in Cambodia Injection equipment is stored in public places for later use, I-RARE, Cambodia Injection equipment is stored in public places for later use, I-RARE, Cambodia IDU Syringe

Qualitative Studies for HIV Surveillance among IDUs Important early step to guide planning of IDU surveillance Critical in mapping high risk groups (HRG) such as IDUs Should be repeated periodically to detect new drug use patterns

Qualitative Studies for HIV Surveillance among IDUs (2) Requires special skills UNODC-sponsored Rapid Situation Assessments (RSAs) are a rich source of qualitative data Personal stories and pictures may help motivate “decision makers”

How Many IDUs?

Qualitative knowledge of drug users helps in mapping and estimating number of IDUs Multiple estimation methods available Multipliers, capture recapture, etc. A “soft” estimate best stated with “high” “low” range See UNAIDS guide Documents/EstimatingPopSizes_en.pdf Documents/EstimatingPopSizes_en.pdf

Two Barriers to High Quality, Effective HIV Surveillance (& Prevention) for IDUs 1. Wide-spread negative views of drug users 2. Limited understanding of drug user culture & how drugs are prepared & used

“Addictphobia” “Addictphobia” is a short name for the stereotypes, stigmas, and negative attitudes about people who use drugs. Similar to “homophobia” and “racism” which are important social and individual factors that influence the success of prevention activities. Source: adapted from Jones TS & Anderson T. Abstract 316, 1999 National HIV Prevention Conference, Atlanta GA USA

Stigma “Gallery” SexismRacismHomophobiaAddictphobia

Most of the People Working On HIV Surveillance (& Prevention) for Drug Users Have Limited Initial Understanding of Drug Use

HIV Surveillance (& Prevention) Staff Need to Understand Drug Use Qualitative studies help Include drug users in the planning and carrying out IDU surveillance Training about drug use & injection Use observations & descriptions of how drug users prepare and inject drugs (Koester) & peer outreach teams US National HIV Behavioral Surveillance System IDU study used several hours of video of drug users preparing & injecting drugs

Professor Steve Koester, University of Colorado, & his son

Water Mix, Rinse Cotton Filter Cooker “Spoon” Source: adapted from Steve Koester

Two drug users using one water container Source: adapted from Steve Koester

Hong Kong Phoenix Peer Outreach Team at work Source: adapted from

Outreach Team, Houston, Texas, USA Source: adapted from

Iran Outreach Team

HIV Behavioral Surveillance of IDUs  How to do it  Where to do it  What data to collect

HIV Behavioral Surveillance for IDUs: How to Do It Sampling options Respondent driven sampling (RDS) Snowball/network sampling Targeted sampling Time location

HIV Behavioral Surveillance for IDUs: Where to Do It Selecting locations Qualitative studies and mapping identify where to find IDUs Special studies in prisons

HIV Behavioral Surveillance for IDUs: How to Do It Plan for repeated surveys using standard sampling and questions so that trends can be followed Plan realistically based on funding and other critical resources (trained workers) Standardized questionnaires can have questions

Behavioral Surveillance for IDUs: What Data to Collect Demographic Knowledge Attitudes Risk behaviors: drugs used, how drugs prepared and used & sharing sexual behaviors, risks & condom use Arrest & jail/prison

Behavioral Surveillance for IDUs: What Data to Collect – Program Services Exposure to and use of prevention & treatment services Peer outreach Opioid substitution treatment Drop-in centers Needle syringe programs Essential to monitor success in reaching large numbers of at-risk IDUs (“going to scale”)

Useful Resources UNAIDS – Epidemiologic Publications on HIV Surveillance pipublications.asp pipublications.asp FHI – Guidelines for Repeated Behavioral Surveys in Populations at Risk of HIV nes.htm

Thank you

Injection drug use is a key factor in HIV and hepatitis B & C transmission

New AIDS cases by year and transmission category, Spain, Source: National AIDS Register, Spain, Updated & adjusted for reporting delays, 30 June, 2006 IDUs

Outreach Team, Seattle WA Source: adapted from

Graffiti – Washington D.C., 1999

Injection Behavior, I-RARE, Cambodia The majority of our participants reported buying and injecting drugs in groups. Source: adapted from K O’Connell, report of I-RARE in Cambodia