1. Implications of HIV Names Reporting: Results from California Edwin Charlebois, MPH PhD Stuart Gaffney, BA AIDS Policy Research Center AIDS Research Institute University of California, San Francisco

2. Why does Surveillance Matter? Tracking the Epidemic. Tracking the Epidemic. –Targeting efforts –Measuring our progress Money Money –Allocating $ 2 Billion of annual Ryan White CARE Act funds

3. AIDS Case & HIV Reporting AIDS Case Reporting AIDS Case Reporting –Name-based –Everyone counted *1999 CDC recommends HIV reporting HIV Infection Reporting HIV Infection Reporting –Name-based or Code-based –Reported only for Confidential testing –Anonymous testing not counted!

4. 3 Types of HIV Reporting Name Name –Reports Name, Risk Group and Demographics –Goes to local health department, then State office Name-to-Code Name-to-Code –Name goes to local health department –Changed to code at local health department –Name deleted after 3 months from files Code Code –Non-name, code based

5. Study Objectives What do HIV testers know about HIV reporting? What do HIV testers know about HIV reporting? Which reporting system do they prefer? Which reporting system do they prefer? Who is concerned about names reporting? Who is concerned about names reporting? Will names reporting deter confidential HIV testing? Will names reporting deter confidential HIV testing?

6. Methods Exit interviews among HIV test takers at publicly funded HIV testing sites Exit interviews among HIV test takers at publicly funded HIV testing sites Four diverse counties chosen: Los Angeles, Fresno, Riverside, Santa Clara Four diverse counties chosen: Los Angeles, Fresno, Riverside, Santa Clara Provided clear written and verbal definitions of HIV reporting concepts Provided clear written and verbal definitions of HIV reporting concepts English and Spanish language interviews English and Spanish language interviews Pre- and Post-implementation surveys Pre- and Post-implementation surveys

7. 2002 Pre-Implementation Results Surveys collected May-July 2002 Surveys collected May-July 2002 208 Individuals 208 Individuals 94 LA, 44 Fresno, 40 Riverside, 30 Santa Clara 94 LA, 44 Fresno, 40 Riverside, 30 Santa Clara 67% Male, 33% Female 67% Male, 33% Female 35% White, 38% Hispanic, 19% African- American, 16% Asian, 4% other 35% White, 38% Hispanic, 19% African- American, 16% Asian, 4% other

8. Respondent Characteristics Median Age = 35 years, Range (18-71) Median Age = 35 years, Range (18-71) 30% < High School, 16% College or more 30% < High School, 16% College or more 70% Heterosexual, 23% Homosexual, 7% Bisexual 70% Heterosexual, 23% Homosexual, 7% Bisexual 21% with History of Injection Drug Use 21% with History of Injection Drug Use 15% with No Prior HIV Testing 15% with No Prior HIV Testing

9. Knowledge of HIV Reporting 29% thought a confidential HIV(+) test would not be reported to the health department and 51% thought it would be reported – 49% thought HIV(+) would be reported, 16% thought HIV(+) would be not be reported, 35% did not know after start of reporting 29% thought a confidential HIV(+) test would not be reported to the health department and 51% thought it would be reported – 49% thought HIV(+) would be reported, 16% thought HIV(+) would be not be reported, 35% did not know after start of reporting 20% Reported knowing which of the 3 types of HIV reporting was about to start in California - only 6% after start of reporting 20% Reported knowing which of the 3 types of HIV reporting was about to start in California - only 6% after start of reporting 12% Correctly identified California’s system as non-name code – only 2% of testers identified CA. system as code. 12% Correctly identified California’s system as non-name code – only 2% of testers identified CA. system as code.

10. 2002 Pre-Implementation Most Acceptable HIV Reporting System

11. Pre- and Post-Implementation: Most Acceptable HIV Reporting System

12. Predictors of Preference for Non-Name or Name-to-Code HIV Reporting Independent (Multivariate) Predictors Female OR=6.2 (1.7-22.0) p=.006 Female OR=6.2 (1.7-22.0) p=.006 Man-who-has-Sex-with-Men OR=5.7 (1.2-26.0) p=.025 Man-who-has-Sex-with-Men OR=5.7 (1.2-26.0) p=.025 Just had Anonymous HIV Test OR=3.6 (1.4-9.3) p=.009 Just had Anonymous HIV Test OR=3.6 (1.4-9.3) p=.009

13. Likelihood of Testing Next 12 Months System Type Confidential HIV test Anonymous HIV test Before start of reporting (2002) Code78%72% Names50%75% After start of HIV reporting (2003-2004) Code78%72% Names54%68% ( Potential deterrent effect of Names reporting! )

14. Wide Diversity of Opinions on HIV Reporting among HIV Test Takers “I think that people who test HIV(+) shouldn't be allowed to hide it. It should be publicized, like in the newspapers.” “I barely just heard about reporting. My friend wouldn't come in and get tested with me because he heard stuff is being reported. It's kind of scary, because they can track you down.”

15. Summary of Post-Implementation Results Knowledge of California’s HIV reporting system is infrequent. Knowledge of California’s HIV reporting system is infrequent. Continued preference for non-name code HIV infection reporting over alternative systems. Strongest preference is among Women, MSMs, and anonymous test takers. Continued preference for non-name code HIV infection reporting over alternative systems. Strongest preference is among Women, MSMs, and anonymous test takers. Significant deterrent effect of name based confidential HIV reporting is still likely. Significant deterrent effect of name based confidential HIV reporting is still likely.

16. Pending California Legislation SB-945 ( SB-945 (Nell Soto, D-Ontario) mandates HIV infection name reporting for California. SB-235 (Jeff Denham, R-Stanislaus, Merced, Madera and San Benito) Criminalization of HIV exposure – removes intent language from existing law.

17. Thank you!

18. Definitions Anonymous You do not give your name. You do not give your name. Usually given a number for test results. Usually given a number for test results. HIV+ results are NOT reported to health department. HIV+ results are NOT reported to health department. Confidential You give your name. Test results given by name or number. HIV+ results MAY or MAY NOT be reported to health departments, depending what state you live in.

19. Name If you test HIV+, your NAME and other information are reported to local and state health department. If you test HIV+, your NAME and other information are reported to local and state health department. ONLY restricted personnel within the health department have access to these records. ONLY restricted personnel within the health department have access to these records. Safeguards are in place to protect who has access to your name. Safeguards are in place to protect who has access to your name.

20. Name-To-Code If you test HIV+, your NAME and other information are reported to local and state health department. If you test HIV+, your NAME and other information are reported to local and state health department. The health department converts your NAME and background information into a CODE that does not include your name. The health department converts your NAME and background information into a CODE that does not include your name. After 3 months, your name is deleted and ONLY your CODE remains in health department records. ONLY restricted personnel within the health department have access to these records. Safeguards are in place to protect who has access to those records.

21. Code If you test HIV+, your doctor and the lab will convert your NAME into a CODE that doesn't include your name. If you test HIV+, your doctor and the lab will convert your NAME into a CODE that doesn't include your name. Only the CODE and other information are reported to local and state health department. Only the CODE and other information are reported to local and state health department. Your name is NOT reported. ONLY restricted personnel within the health department have access to these records. Safeguards are in place to protect who has access to those records.