Implications of HIV Names Reporting: Results from California

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.
• Targeting efforts
• Measuring our progress
• Money
• Allocating 2 Billion of annual Ryan White CARE
  Act funds

3
AIDS Case HIV Reporting

• AIDS Case Reporting
• Name-based
• Everyone counted
• 1999 CDC recommends HIV 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
• Reports Name, Risk Group and Demographics
• Goes to local health department, then State
  office
• Name-to-Code
• Name goes to local health department
• Changed to code at local health department
• Name deleted after 3 months from files
• Code
• Non-name, code based

5
Study Objectives

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

6
Methods

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

7
2002 Pre-Implementation Results

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

8
Respondent Characteristics

• Median Age 35 years, Range (18-71)
• 30 lt High School, 16 College or more
• 70 Heterosexual, 23 Homosexual, 7 Bisexual
• 21 with History of Injection Drug Use
• 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
• 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 Californias 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-ImplementationMost Acceptable HIV
Reporting System
12
Predictors of Preference for Non-Name or
Name-to-Code HIV Reporting

• Independent (Multivariate) Predictors
• Female OR6.2 (1.7-22.0) p.006
• Man-who-has-Sex-with-MenOR5.7 (1.2-26.0) p.025
• Just had Anonymous HIV TestOR3.6 (1.4-9.3)
  p.009

13
Likelihood of Testing Next 12 Months
( 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 Californias 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.
• Significant deterrent effect of name based
  confidential HIV reporting is still likely.

16
Pending California Legislation

• 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.
• Usually given a number for test results.
• 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.
• ONLY restricted personnel within the health
  department have access to these records.
• 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.
• 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.
• 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.