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

Implications of HIV Names Reporting: Implications of HIV Names Reporting: Results from CaliforniaResults from California

Edwin Charlebois, MPH PhDEdwin Charlebois, MPH PhD

Stuart Gaffney, BAStuart Gaffney, BA

AIDS Policy Research CenterAIDS Policy Research Center

AIDS Research InstituteAIDS Research Institute

University of California, San FranciscoUniversity of California, San Francisco

Why does Surveillance Matter?Why does Surveillance Matter?

Tracking the Epidemic.Tracking the Epidemic.– Targeting effortsTargeting efforts– Measuring our progressMeasuring our progress

MoneyMoney– Allocating $ 2 Billion of annual Allocating $ 2 Billion of annual

Ryan White CARE Act fundsRyan White CARE Act funds

AIDS Case & HIV ReportingAIDS Case & HIV Reporting

AIDS Case ReportingAIDS Case Reporting

– Name-basedName-based

– Everyone countedEveryone counted

*1999 CDC recommends HIV reporting*1999 CDC recommends HIV reporting

HIV Infection ReportingHIV Infection Reporting

– Name-based or Code-basedName-based or Code-based

– Reported only for Confidential testingReported only for Confidential testing

– Anonymous testing not counted!Anonymous testing not counted!

3 Types of HIV Reporting3 Types of HIV Reporting NameName

– Reports Name, Risk Group and DemographicsReports Name, Risk Group and Demographics

– Goes to local health department, then State officeGoes to local health department, then State office

Name-to-CodeName-to-Code– Name goes to local health departmentName goes to local health department

– Changed to code at local health departmentChanged to code at local health department

– Name deleted after 3 months from filesName deleted after 3 months from files

CodeCode– Non-name, code basedNon-name, code based

Study ObjectivesStudy Objectives

What do HIV testers know about HIV What do HIV testers know about HIV reporting?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 Will names reporting deter confidential HIV testing?HIV testing?

MethodsMethods

Exit interviews among HIV test takers at Exit interviews among HIV test takers at publicly funded HIV testing sitespublicly funded HIV testing sites

Four diverse counties chosen: Los Angeles, Four diverse counties chosen: Los Angeles, Fresno, Riverside, Santa ClaraFresno, Riverside, Santa Clara

Provided clear written and verbal Provided clear written and verbal definitions of HIV reporting conceptsdefinitions of HIV reporting concepts

English and Spanish language interviewsEnglish and Spanish language interviews Pre- and Post-implementation surveysPre- and Post-implementation surveys

2002 Pre-Implementation Results2002 Pre-Implementation Results

Surveys collected May-July 2002Surveys collected May-July 2002

208 Individuals208 Individuals

94 LA, 44 Fresno, 40 Riverside, 94 LA, 44 Fresno, 40 Riverside, 30 Santa Clara30 Santa Clara

67% Male, 33% Female67% Male, 33% Female

35% White, 38% Hispanic, 19% African-35% White, 38% Hispanic, 19% African-American, 16% Asian, 4% otherAmerican, 16% Asian, 4% other

Respondent CharacteristicsRespondent Characteristics

Median Age = 35 years, Range (18-71)Median Age = 35 years, Range (18-71)

30% < High School, 16% College or more30% < High School, 16% College or more

70% Heterosexual, 23% Homosexual, 70% Heterosexual, 23% Homosexual, 7% Bisexual7% Bisexual

21% with History of Injection Drug Use21% with History of Injection Drug Use

15% with No Prior HIV Testing15% with No Prior HIV Testing

Knowledge of HIV ReportingKnowledge of HIV Reporting 29% thought a confidential HIV(+) test would not 29% thought a confidential HIV(+) test would not

be reported to the health department and 51% be reported to the health department and 51% thought it would be reported thought it would be reported – 49% thought – 49% thought HIV(+) would be reported, 16% thought HIV(+) would be reported, 16% thought HIV(+) would be not be reported, 35% did not HIV(+) would be not be reported, 35% did not know after start of reportingknow after start of reporting

20% Reported knowing which of the 3 types of 20% Reported knowing which of the 3 types of HIV reporting was about to start in California HIV reporting was about to start in California - - only 6% after start of reportingonly 6% after start of reporting

12% Correctly identified California’s system as 12% Correctly identified California’s system as non-name code non-name code – only 2% of testers identified – only 2% of testers identified CA. system as code.CA. system as code.

2002 Pre-Implementation 2002 Pre-Implementation Most Acceptable HIV Reporting SystemMost Acceptable HIV Reporting System

12% 9%

19%

3% 3%

19%27%

18% 18%10%

67%61% 61%

77% 80%

2% 2% 1% 3%7%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

All Fresno Los Angeles Riverside Santa Clara

Name Name-to-Code Code No Preference/Don't Know

Pre- and Post-Implementation:Pre- and Post-Implementation:Most Acceptable HIV Reporting SystemMost Acceptable HIV Reporting System

12%17%19%

24%

67%

54%

2% 4%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pre-Implementation (2002) Post-Implementation (2003)

Name Name-to-Code Code No Preference/Don't Know

Predictors of Preference for Non-Name Predictors of Preference for Non-Name or Name-to-Code HIV Reportingor Name-to-Code HIV Reporting

Independent (Multivariate) PredictorsIndependent (Multivariate) Predictors

Female OR=Female OR=6.2 (1.7-22.0)6.2 (1.7-22.0) p=.006 p=.006

Man-who-has-Sex-with-MenMan-who-has-Sex-with-MenOR=OR=5.7 (1.2-26.0)5.7 (1.2-26.0) p=.025 p=.025

Just had Anonymous HIV TestJust had Anonymous HIV TestOR=OR=3.6 (1.4-9.3)3.6 (1.4-9.3) p=.009 p=.009

Likelihood of Testing Next 12 MonthsLikelihood of Testing Next 12 Months

System System TypeType

Confidential Confidential HIV testHIV test

Anonymous Anonymous HIV testHIV test

Before start of Before start of reporting reporting (2002)(2002)

CodeCode 78%78% 72%72%

NamesNames 50%50% 75%75%

After start of HIV After start of HIV reporting reporting (2003-2004)(2003-2004)

CodeCode 78%78% 72%72%

NamesNames 54%54% 68%68%

( Potential deterrent effect of Names reporting! )

Wide Diversity of Opinions on HIV Wide Diversity of Opinions on HIV Reporting among HIV Test TakersReporting among HIV Test Takers

““I think that people who test HIV(+) shouldn't I think that people who test HIV(+) shouldn't be allowed to hide it. It should be be allowed to hide it. It should be publicized, like in the newspapers.”publicized, like in the newspapers.”

““I barely just heard about reporting. My friend I barely just heard about reporting. My friend wouldn't come in and get tested with me wouldn't come in and get tested with me because he heard stuff is being reported. It's because he heard stuff is being reported. It's kind of scary, because they can track you kind of scary, because they can track you down.”down.”

Summary of Post-Implementation ResultsSummary of Post-Implementation Results

Knowledge of California’s HIV reporting Knowledge of California’s HIV reporting system is infrequent.system is infrequent.

Continued preference for non-name code Continued preference for non-name code HIV infection reporting over alternative HIV infection reporting over alternative systems. Strongest preference is among systems. Strongest preference is among Women, MSMs, and anonymous test takers.Women, MSMs, and anonymous test takers.

Significant deterrent effect of name based Significant deterrent effect of name based confidential HIV reporting is still likely.confidential HIV reporting is still likely.

Pending California LegislationPending 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.

Thank you!Thank you!

DefinitionsDefinitions

AnonymousAnonymous You do not give your You do not give your

name.name. Usually given a Usually given a

number for test results.number for test results. HIV+ results are NOT HIV+ results are NOT

reported to health reported to health department.department.

ConfidentialConfidential You give your name.You give your name. Test results given by Test results given by

name or number.name or number. HIV+ results MAY or HIV+ results MAY or

MAY NOT be MAY NOT be reported to health reported to health departments, departments, depending what state depending what state you live in.you live in.

NameName

If you test HIV+, your NAME and other If you test HIV+, your NAME and other information are reported to local and state information are reported to local and state health department.health department.

ONLY restricted personnel within the ONLY restricted personnel within the health departmenthealth department have access to these have access to these records. records.

Safeguards are in place to protect who has Safeguards are in place to protect who has access to your name.access to your name.

Name-To-CodeName-To-Code If you test HIV+, your If you test HIV+, your

NAME and other NAME and other information are reported information are reported to local and state health to local and state health department.department.

The health department The health department converts your NAME and converts your NAME and background information background information into a CODE that does not into a CODE that does not include your name.include your name.

After 3 months, your After 3 months, your name is deleted and name is deleted and ONLY your CODE ONLY your CODE remains in health remains in health department records. department records.

ONLY restricted ONLY restricted personnel within the personnel within the health department have health department have access to these records.access to these records.

Safeguards are in place to Safeguards are in place to protect who has access to protect who has access to those records.those records.

CodeCode If you test HIV+, your If you test HIV+, your

doctor and the lab will doctor and the lab will convert your NAME convert your NAME into a CODE that into a CODE that doesn't include your doesn't include your name.name.

Only the CODE and Only the CODE and other information are other information are reported to local and reported to local and state health state health department.department.

Your name is NOT Your name is NOT reported.reported.

ONLY restricted ONLY restricted personnel within the personnel within the health department health department have access to these have access to these records.records.

Safeguards are in Safeguards are in place to protect who place to protect who has access to those has access to those records. records.