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Strategies to Enhance Names-Based HIV Reporting in California
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
ď‚— California was one of last 15 states to begin names-
based reporting of non-AIDS cases in 2006
ď‚— Response to change in Ryan White funding
formula
 Number in HIV Registry reported by name
ď‚— Required re-testing of HIV cases listed by code in
the Registry
ď‚— 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
ď‚— 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
ď‚— Use existing data to estimate number of non-AIDS
cases missing from Registry
ď‚— Cost/benefit analysis of additional surveillance
 Using Ryan White funding formulas
 Surveillance cost/case from Los Angeles
ď‚— 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
ď‚— <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
ď‚— 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
ď‚— LHJ follows up cases that State may have in Registry
ď‚— Preliminary positive test does not lead to full names
report
ď‚— Insufficient staffing or funding for active outreach
ď‚— Costly re-classification at time of AIDS diagnosis
ď‚— Lack of coordination between publicly funded
services (e.g., ADAP) and Registry
ď‚— 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
9. State Level Policy Recommendations
ď‚— 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
ď‚— 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)
ď‚— Continue LA, SF program to provide LHJ with
limited access to state Registry
ď‚— Expand funding for outreach, which is cost-saving
ď‚— Assure all ADAP, RW clients are in Registry at initial
enrollment or recertification
ď‚— Publish data on numbers of PWH receiving
treatment in CA, not just cases registered in CA
11. Federal Policy Changes
ď‚— Erase distinction between HIV and AIDS status
 Health and cost differences have been reduced
 Reduce costs of reclassification
ď‚— Collect and publish data to assess relevant outcomes
 CD4 count at diagnosis
 Current Viral Load
 Linked to care? Currently in care?
12. Interim Measures
ď‚— 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
ď‚— Publish data on numbers of cases reported to CDC
that are “duplicates”
13. Conclusions
ď‚— 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
ď‚— 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