What are the repercussions for Illinois and other states that previously reported HIV cases by code and must now switch to a name-based system?
Without congressional interventions, code-to-name jurisdictions could likely lose CARE Act funding beginning next year (Fiscal Year 2007) until their name-based HIV surveillance systems are sufficiently mature. This is because the federal government will begin to distribute CARE Act funding based in part on HIV surveillance data reported to the CDC. The CDC has refused to accept code-based HIV data, which means that none of Illinois’ 13,000 reported HIV cases have been counted by the CDC. However, state decisions to implement non-name-based surveillance are consistent with the most recent CDC Guidelines for National Human Immunodeficiency Virus Case Surveillance (1999, MMWR 48, RR-13), which does state CDC’s preference for name-based reporting but allows states to make their own determinations. The Institute of Medicine’s 2003 report Measuring What Matters urges CDC to work with the 13 code-based jurisdictions, and to accept their data. States like Illinois should not be penalized for
