names reporting
and HIV surveillance

For further information, check out these sources:

Bayer, R. (1990). Testing, Reporting and notifying The Politics of Identification. Private Acts, Social Consequences: AIDS and the Politics of Public Health. New Brunswick, NJ: Rutgers University Press.

Crystal, S. (1990) AIDS contact notification: Initial program results in New Jersey. AIDS Education and Prevention, 4, 284-290.

Rothenberg, K. and Pasky, J., Reuland, M, Zimmerman S., and North, R. (1995). Domestic violence and partner notification: implications for treatment and counseling of women with HIV. Journal of the American Medical Womens Association, 50(3-4), 87-93.

by marnee meyer

In March of 1998, New York State proposed a new set of regulations for the control and surveillance of HIV infection. The Department of Health proposed applying two existing STD surveillance and control policies to the HIV virus--names reporting and partner notification. Over the last 5 years other states around the country have proposed similar tracking and surveillance strategies. Partner notification and names reporting threaten the privacy and safety of individuals who test positive for HIV.

What is Names Reporting?

New York State has proposed to collect the names of those individuals who test positive for HIV. Currently New York State collects the names of individuals diagnosed with AIDS, but only recently the state proposed to extend it to HIV. There are two types of HIV tests--an anonymous test and a confidential test. They sound exactly the same, right? Well they are very different in terms of how they record your HIV test results. When you get an HIV test it's really, really important to ask which type of test that they are offering. With a confidential HIV test, your name is attached to your test results. When you get an anonymous test, you do not have to provide your name. They use a unique identifier to attach to your test results. Most public health departments offer confidential HIV tests only. Some community-based organizations offer anonymous HIV tests; if you are having difficulty identifying a place to get a free anonymous test, remember that you don't necessarily have to give your real name.

The names reporting policy is "bad public health" policy because it may discourage people from actually getting tested for fear that the list of names could be released to the public. The threat of a breach of confidentiality is very real. In October of 1996, William Calvert a public health official in Tampa, Florida downloaded a list of 4,000 persons with AIDS and shared the names with patrons of a local bar. He also sent the list of names to two newspapers, both of which refused to print the names. Mr. Calvert was allegedly keeping the list in his possession to know who was "uninfected" on the dating circuit.

Some states have proposed to use unique identifiers as a way of collecting demographic information about the HIV epidemic without collecting names. Very few states have implemented such programs, probably because the CDC does not support such programs and they provide much of the funding for HIV testing. Therefore many states have proposed or passed names reporting for HIV. However, in many of these states, anonymous testing is still offered, though they are often not clearly identified.

Partner notification--What is it?

Partner Notification (also referred to as contact tracing) has been used as an STD prevention strategy since the1930s. With the rise in STDs in the early 1900s and the development of new treatments in the 1920s, public health officials began to implement surveillance and tracking of STDs. Under partner notification programs, once an individual tests positive for an STD, a public health worker asks for the names of all the people with whom he/she has had sexual contact or shared drug equipment. Under current partner notification policies, the individual is not required to provide the names of contacts to the health department. Partner notification is purely voluntary. However, public health officials are encouraged to be very persuasive in obtaining the names of contacts. After the names have been collected, a public health official locates and provides testing and counseling to individuals who have been exposed an STD. The contacts may be notified by the patient, the provider, or a health care worker. It is up to the individual (who tests positive) to decide whether or not to provide names and how these contacts will be notified.

Until very recently, partner notification was only used as a prevention strategy for gonorrhea, syphilis, herpes and chlamydia--but not for HIV. There are four primary reasons why partner notification was not applied as a prevention strategy for HIV--the absence of a therapeutic intervention, the cost of such a labor intensive strategy, the possibility of a breach of confidentiality, and the fear of discouraging high risk individuals from seeking testing and services. Most public health officials recognized that without a therapeutic intervention, there were no real benefits or justification for partner notification and testing. Secondly, contact tracing can be a very costly prevention method, and many advocates feared that it would divert already limited funding and resources from broadly targeted programs of risk reduction education. Because of the highly stigmatized nature of this disease, issues of privacy were at the forefront of this controversy. AIDS activists feared the dangers involved with the Departments of Health holding a list of names of people identified as HIV infected or at risk for HIV infection. Great consequences would ensue given a breach of confidentiality. People could lose their health insurance or jobs, or face other forms of discrimination if the names were released into the wrong hands. Individuals risked retaliation from angered partner notified of possible exposure to the virus. Both advocates and public health officials agreed that if confidentiality was not maintained, individuals might avoid getting tested or seeking services. A contact tracing policy might push individuals underground and outside the scope of any services.

This new acceptance of PN as a possible prevention strategy was greatly due to the changes in treatment for HIV. With the recent advances in protease inhibitors, public health officials felt that informing partners of their exposure could lead to testing and early treatment for HIV. Although treatment options have changed over the past 15 years, the threat of a breach of confidentiality or retaliation from partners remains. The ACLU has reported several instances of breaches of confidentiality within the context of partner notification. In one case, public health officials posted a notice on an individual's door indicating that she had been exposed to HIV. In another instance, a contact was located at a bowling alley by a public health official, and he was warned about his exposure to HIV in front of his bowling team members. Individuals may avoid HIV testing and partner notification programs because they fear the threat of retaliation from their partners. A survey of HIV providers revealed that 45% had patients that feared partner notification because they were felt that they were at risk for domestic violence, and 25% of the providers had clients who had been assaulted by their partners upon notification. An evaluation of New Jersey's partner notification program revealed that the index patient's negative attitudes about partner notification were due to fear that their anonymity would be compromised or that their contacts may retaliate against them.

The next time you decide to get an HIV test there are two important things that you should know. First ask for whether the test is anonymous or confidential. And second, know that however persuasive the public health workers are, partner notification is not required by law. It is a voluntary program. l

"Marnee Meyer" (not her real name) is a fictious entity that does not really exist.

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