1. Strategies to Enhance Names-
Based HIV Reporting in California
ARLEEN A. LEIBOWITZ
ROBERT WHIRRY
KEVIN FARRELL
PHIL CURTIS
UCLA AND AIDS PROJECT LOS ANGELES

2. Background
 California was one of last 15 states to begin names-
based reporting of non-AIDS cases in 2006
 Response to change in Ryan White funding
formula
 Number in HIV Registry reported by name
 Required re-testing of HIV cases listed by code in
the Registry
 Names-based legislation required physicians and
laboratories to report all positive HIV tests, CD4
and Viral Loads

3. Background (2)
 In February 2010 CA Legislative Analyst’s report
suggested that up to 2/3 of non-AIDS HIV cases were not
in the Registry
 Including many current Ryan White clients
 A complete registry is important
 Enhances California’s response to HIV
 Assures California’s fair share of Ryan White funding
 Goal of this study to evaluate California’s progress
 Estimate number of PLWH who know their status, but are not in
the names-based registry
 Identify challenges to complete reporting
 Make policy recommendations

4. Methods
 Use existing data to estimate number of non-AIDS
cases missing from Registry
 Cost/benefit analysis of additional surveillance
 Using Ryan White funding formulas
 Surveillance cost/case from Los Angeles
 Interviews to assess successful surveillance strategies
 California Office of AIDS
 Local health jurisdictions (LHJ)
 Other states that recently adopted names-based reporting

5. Quantitative Results
 <10,000 PLWH who know their status, are not in the
names-based Registry
 41,155 in code-based Registry
 41,892 in names-based Registry
 LAO match may not have accounted for in-migrants to CA
 Cost/benefit Analysis
 Additional Ryan White funding of $1700/year for each newly
registered case
 Cost of $992 to add a new case to the registry
 Therefore, adding new cases is cost-saving
 Especially if already in care

6. Steps in HIV Registry Process
• Preliminary positive and confirmatory test
Test • Deliver result – obtain reporting information
• Refer to care
Report • Report case to Local Health Jurisdiction (LHJ)
• LHJ checks records and reports to State
• State de-duplicates and reports to CDC
Register • De-duplication with other states

7. Challenges Reported by Counties
 LHJ follows up cases that State may have in Registry
 Preliminary positive test does not lead to full names
report
 Insufficient staffing or funding for active outreach
 Costly re-classification at time of AIDS diagnosis
 Lack of coordination between publicly funded
services (e.g., ADAP) and Registry
 CDC Policy of permanently assigning case to state of
first diagnosis
 Does not necessarily reflect where PLWH receives care
 Hard to know if Registry is complete

8. Policy Recommendations
STATE
FEDERAL

9. State Level Policy Recommendations
 Reduce loss in returning for confirmatory test
results, names reporting
 Reward agencies with high rates of return and link to care
 Refer directly to care for confirmatory test
 Collect and report more information at time of preliminary
diagnosis
 Maintain voluntary case registry for preliminary
positive testers who do not return
 Check for duplicates
 Provide more contact information

10. State Level Policy Recommendations (2)
 Continue LA, SF program to provide LHJ with
limited access to state Registry
 Expand funding for outreach, which is cost-saving
 Assure all ADAP, RW clients are in Registry at initial
enrollment or recertification
 Publish data on numbers of PWH receiving
treatment in CA, not just cases registered in CA

11. Federal Policy Changes
 Erase distinction between HIV and AIDS status
 Health and cost differences have been reduced
 Reduce costs of reclassification
 Collect and publish data to assess relevant outcomes
 CD4 count at diagnosis
 Current Viral Load
 Linked to care? Currently in care?

12. Interim Measures
 Alter CDC case assignment policy to reflect where
PLWH is receiving care
 Reporting of CD4 and VL allows tracking for those in
treatment
 Allows for better follow-up
 Publish data on numbers of cases reported to CDC
that are “duplicates”

13. Conclusions
 California has made good progress in developing a
complete names-based Registry
 Reduce duplicative efforts between county and state, state and
CDC to improve efficiency
 Assure names information is sufficient for outreach
 Federal changes would improve ability of Registries
to track quality of care
 Updating from state of first diagnosis to state where care is
received would facilitate assessment of access problems
 Systematically collecting data on linkage to care, Viral Loads,
maintenance in care would promote evaluation of system
effectiveness