HIV/AIDS: Names-Based Reporting Won’t Deter Testing
Two studies published in today's Journal of the American Medical Association compare the results of confidential and anonymous HIV testing, and "diffe[r] sharply on which method works best" (Reuters/Boston Globe, 10/28). The Los Angeles Times reports that the first study, conducted by the Centers for Disease Control and Prevention, found that tracking HIV cases by name does not deter individuals from undergoing testing, a finding "certain to fuel the fiery debate over how best to track" HIV cases. AIDS activists have long contended that names-based reporting -- confidentially retaining the name with the testing sample -- "drive[s] the epidemic underground" as individuals forgo testing because of privacy concerns. Instead, advocacy groups endorse anonymous testing, which assigns each individual a unique number, rather than a name, for sample identification. The CDC study, conducted at six sites in states requiring HIV tracking by name -- Louisiana, Michigan, Nebraska, Nevada, New Jersey and Tennessee -- found "that the total number of HIV tests in four of the states actually rose in the year after the names-tracking system went into effect" (Marquis, 10/28). However, the researchers found that after names-based reporting was implemented, HIV testing declined among homosexual men in Louisiana and Tennessee. Similarly, among intravenous drug users, testing declined in three states -- Louisiana, Michigan and New Jersey. CDC researchers concluded that the impact of names-based reporting was "small" and "did not appear to affect use of HIV testing" at the six publicly funded sites (Nakashima et al., JAMA, 10/28 issue). Lead author Dr. Allyn Nakashima asserted, "I'd hate to speculate what would happen in every state, but I would guess that in most states (names reporting) is not going to be a problem. Reporting itself is not going to be the issue that keeps people from being tested."
The second JAMA study, led by researchers at San Francisco General Hospital and the University of California-San Francisco, found that individuals who test anonymously seek testing and treatment "significantly earlier" than those tested confidentially. The study surveyed 835 AIDS patients in seven states -- Arizona, Colorado, Missouri, New Mexico, North Carolina, Oregon and Texas (Los Angeles Times, 10/28). Dr. Andrew Bindman and his research team found that AIDS patients tested anonymously received an HIV diagnosis an average of 528 days before those tested in confidential names-based systems. Furthermore, individuals undergoing anonymous testing received HIV drug therapy for a longer period before progressing to the AIDS stage of their disease than those who had confidential testing. The authors found that anonymous testers received 918 days of medical care before developing AIDS, while confidential testers received 531 days of medical care before developing AIDS. Bindman says that the "study provides the strongest evidence to date that anonymous testing contributes at a population level to early HIV testing and medical care." He advocates establishing or maintaining anonymous testing policies at public health departments, in an effort to create a "safety valve" for those wary of names-based reporting systems (Bindman et al., JAMA, 10/28 issue).
Bindman criticized the CDC study for its failure to exclude "many factors besides names-based reporting [that] may have affected testing behavior." In contrast, CDC researchers contend "there is no contradiction between the two studies." They reconcile the results asserting that both studies "support the need for access to anonymous testing among some high-risk populations." Dr. Ralph Frerichs, chief of UCLA's epidemiology department agreed, saying, "both anonymous testing and confidential names-reporting are warranted." He noted that while those unsure of their HIV status might opt for anonymous testing, confidential reporting "comes later, when the individual's privacy concerns may have given way to a desire to enter the medical system for treatment" (Los Angeles Times, 10/28). In contrast, AIDS Action issued a statement expressing concern that eleven states that currently bar anonymous testing most likely discourage individuals from being tested. The group proposes an ambitious new testing campaign using new technology that provides results in 10 minutes. "HIV testing must be safe, swift and simple," said Executive Director Daniel Zingale, who noted that some 700,000 people each year do not return for the HIV test results. He added, "Improved availability of anonymous testing is at the core of an effective and reinvigorated HIV prevention campaign" (AIDS Action release, 10/27). Click here for previous Kaiser Daily HIV/AIDS Report coverage of HIV testing.