1. 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

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

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

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

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

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

8. 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

9. 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

10. 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

11. 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

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

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

15. , Cambodia, 2004 International Rapid Assessment Response and Evaluation, Cambodia, 2004 180 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

16. “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

17. 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

18. 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”

20. How Many IDUs?

21. 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 http://data.unaids.org/Publications/External- Documents/EstimatingPopSizes_en.pdf http://data.unaids.org/Publications/External- Documents/EstimatingPopSizes_en.pdf

23. 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

24. “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

25. Stigma “Gallery” SexismRacismHomophobiaAddictphobia

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

28. 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

29. Professor Steve Koester, University of Colorado, & his son

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

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

32. Hong Kong Phoenix Peer Outreach Team at work Source: adapted from http://www.cdc.gov/outreach/resources/Phoenix_Project.pdfhttp://www.cdc.gov/outreach/resources/Phoenix_Project.pdf

33. Outreach Team, Houston, Texas, USA Source: adapted from http://www.cdc.gov/outreach/pictures.htmhttp://www.cdc.gov/outreach/pictures.htm

34. Iran Outreach Team

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

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

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

39. 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 50-100 questions

40. 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

41. 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”)

42. Useful Resources UNAIDS – Epidemiologic Publications on HIV Surveillance http://www.unaids.org/en/HIV_data/Epidemiology/e pipublications.asp http://www.unaids.org/en/HIV_data/Epidemiology/e pipublications.asp FHI – Guidelines for Repeated Behavioral Surveys in Populations at Risk of HIV http://www.fhi.org/en/HIVAIDS/pub/guide/bssguideli nes.htm

43. Thank you

45. www.cdc.gov/outreach www.cdc.gov/idu

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

47. New AIDS cases by year and transmission category, Spain, 1981-2005 Source: National AIDS Register, Spain, Updated & adjusted for reporting delays, 30 June, 2006 IDUs

48. Outreach Team, Seattle WA Source: adapted from http://www.cdc.gov/outreach/pictures.htmhttp://www.cdc.gov/outreach/pictures.htm

49. Graffiti – Washington D.C., 1999

50. 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