# Presentation: 037618

## Evolution of California’s HIV Reporting System

**California Department of Health Services**
**Office of AIDS**

## 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AB 2120 (Perata) similar (withdrawn)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SB 1029 (Haynes) reporting by name; partner notification; contact tracing (withdrawn)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.

- 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- AB 2120 (Perata) similar (withdrawn)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- SB 1029 (Haynes) reporting by name; partner notification; contact tracing (withdrawn)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.

- California Historical Perspective

## 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.

## 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.

## 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

- Examined existing code-based state systems
- Testing of the code
- Statewide HIV Surveillance Workgroup
- Pilot test
- Surveys
- Training and Education

- Pre-Implementation Activities

**Notes:**
Testing of the Non-Name Code:
OA assessed using existing available databases, the proposed non-name code for its uniqueness, accuracy, and its ability to provide sufficient anonymity to protect a client’s desire for privacy.  
*Piloting of non-name code reporting system
Used to identify operational and technical challenges and assess the quality of surveillance data collected under the new reporting system.
*Survey of LHD
Also to identify potential challenges and needs for technical assistance in implementing and complying with the regulations.
*HIV/AIDS Surveillance Conference
Provided information on the proposed HIV reporting regulations, including responses to the top 20 questions received from LHDs and the results of the survey of HIV/AIDS Surveillance Coordinators.  
*Training of LHD and Laboratories
On-site visits, classroom-style trainings to assist with matching data, establishing contacts with laboratories and providers, and becoming familiar with the HIV reporting regulations.

## The Non-Name HIV Reporting Process

**Laboratory**

**Local Health Department**

**DHS/OA**

- Specimen

- Completes the non-name code and submits case to LHD

- Reports confirmed tests
- indicative of HIV infection
- using the partial non-name code

- Test results

- Submits unduplicated HIV cases using the non-name code

## 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

## The 17-Digit HIV Non-Name Code

- Go to End

- Ex:  **John Smith**  **5/25/82**  **Male**  SSN: ___ __ **9092**

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

- Other anonymous or unlinked HIV testing programs
- Blood banks and plasma centers
- Blinded and/or unlinked seroprevalence studies

- HIV Reporting Exemptions

## 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

## 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

## California HIV and AIDS Data

## HIV/AIDS Case Reporting

- HIV Reporting Implemented

**AIDS Cases by Year of Diagnosis and Report (N=136,755)**
**HIV Cases by Year of Diagnosis (N=33,023)**

- 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.*

## AIDS Deaths

- Deaths Among Individuals Diagnosed with AIDS (N=80,024)

*Source: California Department of Health Services, Office of AIDS, HIV/AIDS Case Registry, August 31, 2004.*

## 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.*

**Notes:**
In California, MSM account for the majority of reported AIDS cases.  As of August 31, 2004, MSM make up 68 % of cumulative cases among adults and adolescents. 

As the chart above illustrates, the most frequent exposure among Californians living with AIDS occurs among men who have sex with men (MSM).  

As of August 31, 2004, MSM, IDU, and MSM/IDU account for 83% of living AIDS cases in California.  
MSM – 63%
IDU – 12%
MSM/IDU – 8%
All other risks- 17%

* Excluded from the chart are 60 AIDS cases, which are presumed deceased but have death dates that are not complete.

## Mode of Exposure

- Males Living with AIDS vs. Reported with HIV

*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.*

**Living w/AIDS, N=50,229**

**HIV, N=27,926**

**Notes:**
In California, MSM account for the majority of reported AIDS cases.  As of August 31, 2004, MSM make up 68 % of cumulative cases among adults and adolescents. 

As the chart above illustrates, the most frequent exposure among Californians living with AIDS occurs among men who have sex with men (MSM).  

As of August 31, 2004, MSM, IDU, and MSM/IDU account for 83% of living AIDS cases in California.  
MSM – 63%
IDU – 12%
MSM/IDU – 8%
All other risks- 17%

* Excluded from the chart are 60 AIDS cases, which are presumed deceased but have death dates that are not complete.

## Mode of Exposure

- Females Living with AIDS vs. Reported with HIV

*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.*

**Living w/AIDS, N=6,116**

**HIV, N=4,802**

**Notes:**
In California, MSM account for the majority of reported AIDS cases.  As of August 31, 2004, MSM make up 68 % of cumulative cases among adults and adolescents. 

As the chart above illustrates, the most frequent exposure among Californians living with AIDS occurs among men who have sex with men (MSM).  

As of August 31, 2004, MSM, IDU, and MSM/IDU account for 83% of living AIDS cases in California.  
MSM – 63%
IDU – 12%
MSM/IDU – 8%
All other risks- 17%

* Excluded from the chart are 60 AIDS cases, which are presumed deceased but have death dates that are not complete.

## Race/Ethnicity

- Males Living with AIDS vs. Reported with HIV

*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.*

**Living w/AIDS, N=50,229**

**HIV, N=27,926**

**Notes:**
In California, MSM account for the majority of reported AIDS cases.  As of August 31, 2004, MSM make up 68 % of cumulative cases among adults and adolescents. 

As the chart above illustrates, the most frequent exposure among Californians living with AIDS occurs among men who have sex with men (MSM).  

As of August 31, 2004, MSM, IDU, and MSM/IDU account for 83% of living AIDS cases in California.  
MSM – 63%
IDU – 12%
MSM/IDU – 8%
All other risks- 17%

* Excluded from the chart are 60 AIDS cases, which are presumed deceased but have death dates that are not complete.

## Race/Ethnicity

- Females Living with AIDS vs. Reported with HIV

*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.*

**Living w/AIDS, N=6,116**

**HIV (not AIDS), N=4,802**

**Notes:**
In California, MSM account for the majority of reported AIDS cases.  As of August 31, 2004, MSM make up 68 % of cumulative cases among adults and adolescents. 

As the chart above illustrates, the most frequent exposure among Californians living with AIDS occurs among men who have sex with men (MSM).  

As of August 31, 2004, MSM, IDU, and MSM/IDU account for 83% of living AIDS cases in California.  
MSM – 63%
IDU – 12%
MSM/IDU – 8%
All other risks- 17%

* Excluded from the chart are 60 AIDS cases, which are presumed deceased but have death dates that are not complete.

## HIV Cases and PLWA by Region of Residence

**HIV Cases (N= 33,023)****Persons Living With AIDS (PLWA) (N=56,731)**

**9,845 (29.8%)**

**4,879 (14.8%)**

**4,446 (13.5%)**

**4,452 (13.5%)**

**5,468 (16.6%)**

**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.*

**17,474 (30.8%)**

**8,609 (15.2%)**

**6,650 (11.7%)**

**9,980 (17.6%)**

**8,367 (14.8%)**

**5,645 (10.0%)**

## TESTING PATTERNS FOLLOWINGIMPLEMENTATION 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

**Notes:**
An effect due to the advent of HIV reporting in Jan. 2002 would be represented as a sudden, obvious decrease in HIV testing following that date. 
None of the data show these types of changes surrounding that date.
Changes that are demonstrated by these data are gradual and seen continuously from before to after that date
Small gradual change seen:  that is, decrease in number of tests, increase in positive tests, and increase in number of MSM testing & decrease in number of Caucasians testing most likely due to improved targeting of at-risk individuals due to policy changes implemented by OA in last 4 years

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## Thank You.