CDC recommends all states make anonymous HIV testing available
11 states urged to re-evaluate testing policies
To help ensure that reporting policies do not deter even a small number of people from seeking HIV testing, the Centers for Disease Control and Prevention has recommended that all states make anonymous testing available. Anonymous testing is currently available in all but 11 states. The CDC has urged those states to re-evaluate their policies on this issue.
The statement, released to clarify the CDC’s position on the issue, follows some initial confusion resulting from two reports that appeared in the October 1998 issue of the Journal of the American Medical Association.
The articles addressed different issues regarding HIV testing and reporting, says Allyn K. Nakashima, MD, of the Division of HIV/AIDS Prevention at the CDC. Nakashima, who is lead author of one of the articles, explained that misunderstandings have resulted from the terms involved. (See definitions of relevant terms, p. 3.)
UCSF study: Anonymous testing facilitates early treatment
The studies have reignited the heated debate concerning HIV testing and names reporting. The first JAMA article, written by researchers at the University of California, San Francisco (UCSF), concluded that anonymous testing is important in encouraging early testing and treatment.1
The UCSF study evaluated testing practices in seven states to determine whether anonymous HIV testing was associated with earlier HIV testing and HIV-related medical care than confidential HIV testing among people diagnosed with AIDS. The study found that HIV-infected individuals who used anonymous testing services got tested and entered care earlier than those who used confidential services.
The average time between learning they were HIV-positive and the diagnosis of AIDS was 1,246 days for people who used anonymous testing compared to 718 days for people who used confidential testing. People who tested anonymously experienced an average of 918 days in HIV-related care before being diagnosed with AIDS, whereas confidential testers had 531 days of HIV-related care before AIDS diagnosis.
As the authors note, "As a result of this earlier testing and care, persons tested anonymously received the potential benefits of a significantly longer period of HIV-related medical care compared with persons who tested confidentially."
It is uncertain whether the benefit observed for anonymous testing is attributable to the availability of this type of testing or to characteristics of people tested anonymously that make them seek earlier testing and care, say the UCSF researchers. "For example, among HIV exposure groups, gay men were more likely to seek anonymous testing. From a policy perspective the question is whether the same persons who seek early HIV testing at anonymous sites would do so at confidential sites if anonymous testing sites were eliminated."
The authors concluded that, for the good of public health, anonymous testing was necessary in providing early access to HIV testing and HIV-related medical care.
The CDC study was designed to describe trends in use of HIV testing services at publicly funded HIV counseling and testing sites before and after the implementation of confidential HIV reporting policies.2 Researchers analyzed retrospective data from six state health departments (Louisiana, Michigan, Nebraska, Nevada, New Jersey, and Tennessee) 12 months before and 12 months after reporting was introduced.
The researchers found that when reporting laws went into effect, testing did start falling off, but that there were no significant declines. They also did not find a consistent increase in all the states, although they did find some trends in testing behavior. According to the authors, "In all areas, testing of at-risk heterosexuals increased in the year after HIV reporting was implemented."
However, reports of testing among high-risk groups, especially gay men, were the most surprising. "We thought that gay men would stay away from reporting, but the declines we saw were really small," says Nakashima. "We thought that was really significant, that it was telling us that most people out there aren’t going to be very sensitive to reporting laws."
Those findings coincide with a still-unpublished study Nakashima has submitted to JAMA. The study surveyed gay men and injection drug users. "We asked them in interviews, For what reasons would you avoid testing?’" she says. Name reporting was a concern for only 2% of responders. "Most people aren’t worried about reporting. They’re worried about whether they’re going to live or die or whether their partner knows or not."
While at one time there had been some declines among injection drug users in Michigan, those seemed to be related to athlete Magic Johnson’s announcement that he was HIV-positive. "We looked at the data a year later, and numbers were back to the level they had been holding the year before," Nakashima says. She adds that the numbers of the "worried well heterosexual population" who sought testing increased briefly after the Magic Johnson announcement.
Anonymous testing was available in four states the CDC studied. Other reports suggest that the introduction of anonymous testing increases testing in high-risk populations, and the elimination of it decreases testing in these groups. In Nevada and Tennessee, where anonymous testing was not available, overall testing increased after HIV reporting was introduced; however, a small decline in testing occurred among gay men in Tennessee. If there had been no access to anonymous testing in the other states, more declines in testing after implementation of HIV reporting policies might have been seen, the authors wrote.
"In states where we could evaluate anonymous vs. confidential testing — Louisiana and Nebraska — we concluded that there may be some persons who wish to test anonymously and concur with the Council of State and Territorial Epidemiologists that states considering HIV reporting policies should make anonymous testing available," the study says.
Improved therapies are causing a decline in clinical AIDS incidence and deaths, so case reporting will be vital in providing information on people who are HIV-infected but have not developed AIDS, the study says. "Reporting is necessary for monitoring, planning and allocating resources for prevention and clinical services," the researchers write.
As more states either implement HIV surveillance or consider it, there has been some concern that HIV reporting might deter people from seeking care. "This study should help allay these concerns, as these data show no significant declines in testing following the implementation of HIV reporting," say the authors. "As states implement confidential HIV reporting policies, these data indicate that the impact of surveillance on those seeking HIV testing will be small and should not hinder HIV prevention efforts."
Previous CDC studies have indicated that the lack of anonymous testing options may serve as a deterrent to testing in some high-risk populations. Maintaining anonymous test sites is important for prevention efforts and may help ensure that more individuals learn their status and receive maximum benefit from HIV treatment, says Nakashima.
Unless prohibited by state law, the CDC requires that states offer anonymous HIV testing as a condition of funding.
References
1. Bindman AB, Osmond D, Hecht F, et al. Multistate evaluation of anonymous HIV testing and access to medical care. JAMA 1998; 280:1,416-1,420.
2. Nakashima AK, Horsley R, Frey RL. Effect of HIV reporting by name on use of HIV testing in publicly funded counseling and testing programs. JAMA 1998; 280:1,421-1,426.
HIV Testing/Reporting Terms
• Confidential testing refers to any HIV test performed in a clinic or physician’s office where the test result is recorded in the patient’s medical record. As with any routinely performed medical test, strong legislation and tradition (i.e., doctor-patient relationship) protect the confidentiality of medical records.
• Anonymous testing, by contrast, requires that no record of the test is kept in the patient’s medical record. The test is assigned a number; the patient’s name or other identifiers are not recorded with this number. Neither the clinic staff nor the laboratory know the patient’s identity.
• Anonymous testing policy refers to a health department’s policy to fund counseling and testing sites that provide anonymous testing. Opponents of anonymous testing say too many patients fail to return for HIV test results and cannot be notified of these results if the testing is done anonymously.
• Confidential HIV name reporting refers to the health department’s policy to collect reports of HIV cases (including patients’ names) from physicians, clinics, laboratories, and other health care workers. Such information helps in monitoring the number of HIV cases and planning programs for HIV-infected people. The confidentiality and security of HIV case reports are protected by laws and regulations. Currently, 29 states have name-based reporting policies for adolescent/HIV cases.
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