Connecticut Considers New HIV Reporting System

Health officials in Connecticut are contemplating a new HIV reporting system to replace the current "patchwork" system in place, the Hartford Courant reports. Authorities attempted to pass a proposal in 1997 that would have made HIV a "reportable" infection, requiring that a confidential register of people with the disease be maintained. But AIDS advocates "lobbied passionately" against such a name-based system and the resulting compromise has left the state with "spotty and unreliable" figures, according to the Courant. Currently, medical labs are required to report the number of HIV-positive tests to the state Department of Public Health. Pediatric AIDS cases for people under the age of 13 are also routinely reported and all newborns are screened for HIV exposure either during pregnancy or after birth. Last year, 1,054 positive tests were reported at medical labs, with an additional 233 from public clinics and only two pediatric cases. But these results lack personal data such as gender, race and town of residence, and there is no system for identifying duplicate tests.

The Significance of Numbers
The lack of reliable HIV statistics makes tailoring prevention and treatment efforts difficult. In addition, Dr. Joxel Garcia, Connecticut's commissioner of public health, said that the "poor data on HIV makes [proposing an increase in state HIV/AIDS funds] hard to justify." The reporting issue has recently gained the attention of state officials, because the federal government plans within the next five to seven years to grade a state's federal treatment funding based on its number of HIV-positive residents. Those states with unreliable HIV reporting systems are "going to lose out," the Courant reports. Connecticut currently receives $12.8 million in federal treatment funds, and HIV/AIDS services currently account for 16% of the department of health's annual budget, one of its largest programs. Garcia indicated that although the overall number of AIDS cases in the state has decreased by half in the past four years, "other health priorities" compete with HIV for state funds. Garcia said that he would like to decide on the type of reporting by June.

Names or No Names
A names-based reporting system seems like a "simple" answer, as 33 other states have such programs, but the concept has been criticized by those who fear being "stigmatized" if their status becomes known. Activists also worry that the same fear would keep people from getting tested or seeking treatment. An alternative being used in six states and Puerto Rico is "unique-identifier" reporting, whereby the state gives each HIV-positive individual a code or unique identifier instead of using his or her name. But a September report from the Institute of Medicine determined the current surveillance practices to be "flawed." HIV reporting in general is a "twisted system" because "[y]ou learn about infections as you test for them, not as they happen," Edward Kaplan of Yale University, who was on the IOM panel, said. The IOM suggested a mixed approach using anonymous random testing at "high-risk" sites, community surveys and new follow-up tests called "detuned assay[s]," which can determine the infections that occurred within the previous four to six months. Such an approach would give researchers a "sense of who is being infected -- and where," according to the panel. The CDC, however, sees names-based reporting as the system "most likely to provide the best foundation for good state and national data," but also "favors" giving all those who receive the test the option to remain anonymous. Garcia said that he has talked with local advocacy groups and thinks the attitude toward names-based reporting has "shifted," as the state has proven itself to be "trustworthy" with personal information regarding other diseases. He indicated that he will continue to assess the situation and look for answers to the reporting problem (Condon, Hartford Courant, 3/18).