Evolution of Californias HIV Reporting System

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Evolution of Californias HIV Reporting System
California Department of Health Services Office
of AIDS
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California Historical Perspective

• Pre-1998
• Unsuccessful HIV-related ballot initiatives
• 1998
• AB 1663 (Migden) reporting by code (vetoed)
• AB 2120 (Perata) similar (withdrawn)
• 1999
• AB 103 (Migden) similar to AB 1663 (vetoed)
• 2000
• SB 1029 (Haynes) reporting by name partner
  notification contact tracing (withdrawn)
• FY 2000-2001 Budget Act
• 2.8 M to develop and implement a non-name
  reporting system.
• OA directed by Governor Davis to implement HIV
  reporting within existing statute.

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Result of FY 2000-01 Budget Act

• Development and implementation of regulations to
  report HIV infection by a 17 digit code
  (California Code of Regulations, Title 17,
  Sections 2641.5-2653.2 became effective July 1,
  2002.)
• Funding augmentation to LHJs for infrastructure
  development.

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Why Code Rather Than Name?

• California law (Health and Safety Code Section
  120980) prohibits the release of HIV test results
  using identifying characteristics, except under
  certain circumstances.

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Pre-Implementation Activities

• Worked closely with CDC regarding system
  development
• Examined existing code-based state systems
• Testing of the code
• Statewide HIV Surveillance Workgroup
• Pilot test
• Surveys
• Training and Education

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The Non-Name HIV Reporting Process
Specimen
Health Care Provider
Laboratory
Test results
Completes the non-name code and submits case to
LHD
Reports confirmed tests indicative of HIV
infection using the partial non-name code
Local Health Department
Submits unduplicated HIV cases using the non-name
code
DHS/OA
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HIV Reporting System Features

• Dual reporting system
• Laboratories and health care providers must
  submit reports
• Laboratory driven
• Reports from labs can be followed up by LHD
  surveillance staff
• Matching abilities local, state levels
• Modified CDC case report form

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The 17-Digit HIV Non-Name Code
Ex John Smith 5/25/82 Male SSN ___ __ 9092
Go to End
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HIV Reporting Exemptions

• Publicly-funded Alternative Testing Sites
• Other anonymous or unlinked HIV testing programs
• Blood banks and plasma centers
• Blinded and/or unlinked seroprevalence studies

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Successes and Challenges

• Successes
• Smooth implementation
• Reliable code system
• All counties responsive
• Unduplication capability
• No change in HIV testing patterns
• Over 33,000 unduplicated cases reported

• Challenges
• System is somewhat cumbersome
• Increasing reporting backlog
• CDC is not accepting code-based cases
• Failure of providers to keep mandated cross
  referencing log
• Funding limitations

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Recent Developments

• July 2004 - 2 year anniversary of regulations
• August 2004 - California Performance Review
  report recommended names reporting
• August 2004 - Los Angeles County - media release
  regarding support of names reporting LA
  advocates plan to seek legislation in 2005
• In process OA clarifying amendments to
  regulations
• In process OA evaluating the system

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California HIV and AIDS Data
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HIV/AIDS Case Reporting
AIDS Cases by Year of Diagnosis and Report
(N136,755) HIV Cases by Year of Diagnosis
(N33,023)
HIV Reporting Implemented
Note In 1993, CDC expanded the AIDS case
definition to include indicator diseases and low
CD4 levels. Cases initially reported as
HIV (non-AIDS) and later reported as AIDS are
included in AIDS case counts.
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004.
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AIDS Deaths
Deaths Among Individuals Diagnosed with AIDS
(N80,024)
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004.
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Cumulative AIDS Cases, Persons Living with AIDS,
and Persons Living with HIV (not AIDS)
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004.
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Mode of Exposure Males Living with AIDS vs.
Reported with HIV
Living w/AIDS, N50,229
HIV, N27,926
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004. Data exclude 386 and 291 transgender
individuals living w/AIDS and reported with HIV
infection, respectively.
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Mode of Exposure Females Living with AIDS vs.
Reported with HIV
Living w/AIDS, N6,116
HIV, N4,802
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004. Data exclude 386 and 291 transgender
individuals living w/AIDS and reported with HIV
infection, respectively.
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Race/Ethnicity Males Living with AIDS vs.
Reported with HIV
Living w/AIDS, N50,229
HIV, N27,926
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004. Data exclude 386 and 291 transgender
individuals living w/AIDS and reported with HIV
infection, respectively. Other/unknown category
includes Native Americans, multiracial
individuals, and those with unknown
race/ethnicity.
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Race/Ethnicity Females Living with AIDS vs.
Reported with HIV
Living w/AIDS, N6,116
HIV (not AIDS), N4,802
Source California Department of Health Services,
Office of AIDS, HIV/AIDS Case Registry, August
31, 2004. Data exclude 386 and 291 transgender
individuals living w/AIDS and reported with HIV
infection, respectively. Other/unknown category
includes Native Americans, multiracial
individuals, and those with unknown
race/ethnicity.
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HIV Cases and PLWA by Region of Residence
HIV Cases (N 33,023)Persons Living With AIDS
(PLWA) (N56,731)
17,474 (30.8)
9,845 (29.8)
8,609 (15.2)
4,879 (14.8)
5,645 (10.0)
4,446 (13.5)
8,367 (14.8)
4,452 (13.5)
9,980 (17.6)
5,468 (16.6)
6,650 (11.7)
3,929 (11.9)
Bay area includes Alameda, Berkeley, Contra
Costa, Marin, Napa, San Mateo, Santa Clara,
Solano, and Sonoma Counties. Southern urban
region includes Long Beach, Pasadena, Orange,
Riverside, and San Bernardino Counties. Graph
excludes 4 HIV cases and 6 PLWA with unknown
region of residence at diagnosis. Source
California Department of Health Services, Office
of AIDS, HIV/AIDS Case Registry, August 31, 2004.
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TESTING PATTERNS FOLLOWINGIMPLEMENTATION OF HIV
REPORTING JULY 1, 2002

• No change in
• Total number of HIV tests
• Number of positive HIV tests
• Number of tests by bisexuals, injection drug
  users,
• persons with HIV partners, other risks
• Number of Hispanic, African-American,
  Asian/Pacific Islander, Caucasian or other race
  who test
• Slight, gradual increase in
• Number of tests by MSM, possibly due to
• Increasing risk among young MSM
• Improved targeting of this at-risk population
• Slight, gradual decrease in
• Number of Caucasians testing, possibly due to
• Improved targeting of at-risk populations

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Thank You.