Sexually Transmitted Diseases:
HIV Partner Notification: A Neglected Prevention Intervention
GOLDEN, MATTHEW R. MD, MPH
From the Division of Infectious Diseases and the Center for AIDS & STD, University of Washington, and Public Health–Seattle & King County STD Program, Seattle, Washington
Supported by NIH K23 AI01846-02.
Correspondence: Matthew R. Golden, MD, MPH, Harborview Medical Center, Box 359777, 325 9th Avenue, Seattle, WA 98104. E-mail: email@example.com
Received for publication March 26, 2002 and accepted March 28, 2002.
IN THIS ISSUE OF Sexually Transmitted Diseases, Carballo-Diéguez and colleagues report the results of a survey conducted to assess the acceptability and potential need for partner notification (PN) of HIV exposure among sexually transmitted disease (STD) clinic patients in New York City. The survey was conducted in the context of a 1998 New York State law mandating that efforts be made to notify sex and needle-sharing partners of all persons diagnosed with HIV infection and was undertaken before planned implementation of more widespread PN in 2000. One remarkable aspect of this investigation is that it was undertaken in 2000; 15 years after the recognition of HIV as an STD, researchers in the largest city in the United States undertook an effort to systematically gauge whether HIV PN is acceptable. How can it be that HIV PN is only now becoming routine in one of the epicenters of the US AIDS epidemic?
How Did We Get Here?
HIV partner notification has always been controversial. Early in the epidemic, detractors of PN emphasized the potential for the process to lead to stigmatization and discrimination against persons with HIV/AIDS, 1 the high costs of instituting PN for HIV, 2 the potential for the process to decrease HIV testing, 3 the lack of effective treatment, and the absence of data supporting the efficacy of PN as a control strategy. 3
More recently, the balance of concerns has shifted considerably. 4 Discrimination against sexual minorities, though still alarmingly common, has diminished. 5 Institution of HIV PN in confidential testing programs has generally not been associated with a large impact on testing volume, 6 and HIV reporting, a prerequisite for widespread application of PN outside of public health testing sites, has not been identified as a common barrier to HIV testing. 7 Moreover, the institution of PN has not led to elimination of anonymous testing programs. 8 Cost-effectiveness analyses support HIV PN. 9,10 Finally and most important, therapies with proven impact on mortality 11 and perinatal transmission 12 and possible efficacy in preventing sexual transmission of HIV 13 have become widely available, creating a strong impetus for more aggressive HIV case–finding efforts, possibly including PN services.
Despite these changes, widespread reconsideration of HIV PN has been slow to develop. Some groups purporting to represent men who have sex with men (MSM) and persons with HIV/AIDS have continued to voice concerns about HIV PN, particularly in response to proposals to link PN to name-based HIV reporting. 14,15 Perhaps as a consequence, unlike HIV medical care, education, and biomedical research, HIV PN has received little political support. Resources for expanded HIV PN are inadequate in many parts of the United States. The number of federally funded public health advisors assigned to state STD programs decreased from 440 in 1980 to 208 in 2000. 16 Much of this decline was offset by direct financial assistance to states, but the extent to which this assistance went for PN activities is uncertain, and a recent survey of STD program directors reported that lack of funds was a major barrier to expanded PN services. 17
What Do We Know?
Many HIV-positive patients do not notify their partners, 18–21 and existing data suggest that most clinical providers do little more than advise patients to notify their partners. 22 Unfortunately, relatively few data are available to assess the effectiveness of public health efforts to improve HIV PN. 23,24 A summary of data on HIV PN process outcomes from published studies of PN programs in the United States is presented in Table 1. Several aspects of these data merit comment. First, eight of nine published reports on the effectiveness of HIV PN were conducted during the late 1980s and early 1990s, the period before the introduction of effective antiretroviral therapy. Second, only four of nine study reports described results from geographic areas with high rates of HIV (San Francisco, Virginia, South Carolina, and Florida), only one of which included persons diagnosed outside of STD clinics. Among these studies, the only recent one showed that 97% of MSM diagnosed with HIV in San Francisco public health HIV testing sites refused to meet with a PN counselor. 25 Such a wholesale rejection of PN is discouraging, but it is so uniform and at odds with previous studies as to raise questions about whether program staff charged with implementing PN were adequately trained and supportive of the process or whether the population studied was fundamentally different from those included in previous studies.
Only one published randomized trial, with a total enrollment of 74 patients, has compared different approaches to HIV PN; it showed that provider referral, the practice of having partners notified by public health staff, resulted in more partners being notified than did patient referral, the practice of leaving responsibility for PN to patients themselves. 26 In seeming contrast to this success, Osmond and colleagues found that persons with AIDS in states with name-based HIV reporting did not recall notifying more partners at the time of their initial HIV diagnosis than persons in states without name-based HIV reporting. 7
This finding should be interpreted with caution. The populations compared were likely different. Many, and perhaps most, people in states with name-based HIV reporting probably received no public health PN services; even in places where provision of PN services is regarded as routine, persons testing HIV-positive often are not offered assistance with PN. 27 Finally, participant self-reporting about PN events that often occurred years before the study interview is of uncertain validity. 28
Overall, the published data on HIV PN are outdated, inconclusive, and largely anecdotal. Studies show that HIV PN can identify new cases of HIV in some instances, but the data are inadequate for drawing firm conclusions about the overall effectiveness of HIV PN as it is currently practiced by health departments in the United States.
What Is to Be Done?
The Serostatus Approach to Fighting the HIV Epidemic (SAFE), recently announced by the Centers for Disease Control and Prevention, provides an impetus for placing greater emphasis on HIV PN. 29 Part of this initiative should be a systematic effort to collect data on PN outcomes. There are several important but unanswered questions:
What is the current HIV PN system in the United States? At least 33 states have enacted HIV/AIDS-specific PN laws, and many others have communicable disease laws that apply to HIV 30 (Ann Dietrich, personal communication, February 2002). In addition, federal law requires that states receiving Ryan White funds show “good faith efforts” to notify spouses of persons infected with HIV. However, what proportion of people with newly diagnosed HIV receive public health PN services, how these services are targeted, and what PN services health departments routinely provide remain unknown.
Is widespread PN, especially when linked to named HIV reporting in high-prevalence urban areas, acceptable to people with HIV? How can it be organized to best assist persons with HIV to ensure that their partners are notified and tested? Answering these questions will both help organize HIV PN and serve a political purpose, allowing public health officials as well as community groups concerned about HIV to better gauge the extent of opposition to HIV PN and tailor programs to best serve those affected. Formative research in this area among injection drug users (IDUs) has identified important barriers to PN 31 but also suggests that many people with HIV want assistance in notifying partners. 32,33 Carballo-Diéguez et al. provide further evidence to suggest that HIV PN is acceptable and that many persons would desire assistance with PN if it were offered. Though the results are encouraging, the study design employed has important limitations. Very few patients surveyed probably had HIV, and all were being tested in public health testing sites, venues where PN programs already concentrate their efforts. Further study is needed focusing on the wider population of persons with newly diagnosed HIV.
How effective is HIV PN, how much does effectiveness vary, and what factors are associated with successful programs? Available data are clearly inadequate to address these questions. Several studies have suggested that PN is less effective among MSM than among heterosexuals. 18,34,35 If more resources are to be allocated to HIV PN, part of this process should include collection of data to assess program effectiveness and to identify program and population attributes that characterize successful PN. On the basis of findings from such research, the CDC should consider monitoring HIV PN process outcomes and should make resources available to improve PN programs that perform poorly.
What novel approaches to HIV PN might improve the process? Recent research offers some hope. Brewer recently reported that enhanced partner elicitation techniques increase the number of sex and needle-sharing partners brought for testing among persons with STD. 36 Research conducted in the Oasis clinic in Los Angeles showed that HIV-infected patients in an inner-city clinic can successfully bring in peers for HIV testing and counseling and that persons found to be HIV-positive can be successfully treated. 37 In Chicago, Levy and Fox employed former IDUs in an outreach-assisted model of PN. They found that most of the 138 IDUs to whom their outreach workers offered PN assistance wanted help notifying at least some of their sex or needle-sharing partners; offering assistance ranging from skill counseling about how to notify partners to providing outreach-assisted notification allowed the investigators to identify 38 new cases of HIV 32 (Judith Levy, personal communication). These studies require follow-up, but the findings suggest that new approaches may improve PN.
Perhaps no area of STD research has been more neglected than PN. Fortunately, some momentum appears to be developing in support of a renewed emphasis on this long-standing disease control activity.
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© Copyright 2002 American Sexually Transmitted Diseases Association
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