Strategies to Enhance Names-Based HIV Reporting in California

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Strategies to Enhance Names-Based HIV Reporting in California

  1. 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. 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. 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. 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. 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. 6. Steps in HIV Registry Process • Preliminary positive and confirmatory test Test • Deliver result – obtain reporting information • Refer to careReport • Report case to Local Health Jurisdiction (LHJ) • LHJ checks records and reports to State • State de-duplicates and reports to CDCRegister • De-duplication with other states
  7. 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. 8. Policy Recommendations STATE FEDERAL
  9. 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. 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. 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. 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. 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

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