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Concerns About Article on Code-Versus-Name Reporting of HIV

Frye, Douglas M MD, MPH; Bunch, Gordon MA; Bingham, Trista MS, MPH; Fielding, Jonathan MD, MPH

JAIDS Journal of Acquired Immune Deficiency Syndromes: October 1st, 2006 - Volume 43 - Issue 2 - p 249-250
doi: 10.1097/01.qai.0000246036.93758.6c
Letters to the Editor

HIV Epidemiology Program, Los Angeles County Department of Health Services, Los Angeles, CA

To the Editor:

After reading the article by Charlebois et al1 in this journal, we have some concerns about the authors' choice of methodology and the strength of their conclusions. Our biggest concern is that the authors limit their study to eliciting participant preferences under hypothetic conditions in an effort to predict future HIV testing behavior. The authors provide no behavioral theory on which to base their study design, nor do they mention the caveats and limitations of such theories.2,3

In a 1997 review article, Burris4 devotes one section to faulty assumptions and omissions made by investigators who sought to assess the social risk of HIV testing in the 1980s and 1990s. We believe that some of these same criticisms would apply to the present article, not the least of which being that asking participants about their willingness to be tested under various hypothetic testing regimens is “inherently suggestive”.4

Indeed, although the authors present a potential perceived risk of testing confidentially for HIV under a name-based reporting system, that is, participants' names would be reported to the government, nowhere do they present any public health benefits of this system, such as the fact that name-based reporting systems are more accurate, less burdensome, and less costly than reporting by code5 and that significant federal funding for HIV care services is soon going to be tied to HIV reporting.6 In addition, they might have further informed their participants that name-based reporting of preventable communicable diseases has been the public health norm in this country for more than 100 years, that AIDS cases have been confidentially reported by name for more than 20 years, and that the Centers for Disease Control and Prevention (CDC) has advised states to report HIV by name since 1999.7 In our view, failure to present this information raises some doubt as to whether their subjects were adequately informed before stating their preference for one of the HIV reporting system choices.

Another concern was that because only 6% of their postimplementation participants knew the correct type of HIV reporting system that was implemented in California, we can infer that 94% of these participants would not have been in a position to make an informed testing decision based on certain knowledge of their state's HIV reporting system. Although not discussed by the authors, this important finding mirrors past studies in which most participants were unaware of their state's reporting policy.8-10

We were also concerned that with only 30% of their study sample identifying as gay or bisexual and 21% reporting injection drug use, it is likely that fewer than half of their study subjects were representative of those at highest risk for HIV infection in California, a state wherein nearly 79% of reported adolescent and/or adult HIV cases in which risk was known were men who have sex with men and 17% were persons who inject drugs.11

Recent studies have measured actual HIV testing behavior before and after the implementation of HIV reporting surveillance12,13 or have elicited privacy concerns and self-report of testing behavior among high-risk individuals.8-10 All these studies found that name-based HIV reporting did not have or would not be expected to have a significant deterrent effect on HIV testing.

Charlebois et al1 would have readers believe that persons at high-risk for HIV infection in California would be less likely to get tested for HIV in the future under a name-based rather than code-based HIV reporting system. Further, they claim that their study “documents strong support among HIV test takers in California for a non-name code HIV reporting system.” For the reasons outlined above, we cannot agree with either assertion.

Douglas M. Frye, MD, MPH

Gordon Bunch, MA

Trista Bingham, MS, MPH

Jonathan Fielding, MD, MPH

HIV Epidemiology Program Country of Los Angeles Department of Public Health Los Angeles, CA

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1. Charlebois ED, Maiorana A, McLaughlin M, et al. Potential deterrent effect of name-based HIV infection surveillance. J Acquir Immune Defic Syndr. 2005;39:219-227.
2. Azjen I. Nature and operation of attitudes. Annu Rev Psychol. 2001;52:27-58.
3. Airhihenbuwa CO, Obregon R. A critical assessment of theories/models used in health communication for HIV/AIDS. J Health Commun. 2000;5:5-15.
4. Burris S. Driving the epidemic underground? A new look at law and the social risk of HIV testing. AIDS Public Policy J. 1997;12:66-78.
5. Centers for Disease Control and Prevention. Evaluation of HIV case surveillance through the use of non-named unique identifiers-Maryland and Texas, 1994-1996. MMWR Morb Mort Wkly Rep. 1998;46:1254-1272.
6. Ryan White Care Act: A Compilation of the Ryan White Care Act 1990, as Amended by the Ryan White Care Act Amendments of 1996 and the Ryan White Care Act Amendments of 2000. Section 2618, Distribution of Funds, (a), (2), (D), (i), National Archives and Records Administration, Office of Federal Register, Washington, DC, October 25, 2000.
7. Centers for Disease Control and Prevention. CDC guidelines for national HIV case surveillance, including monitoring for HIV infection and AIDS. MMWR Morb Mort Wkly Rep.. 1999;48:12.
8. Hecht FM, Chesney MA, Lehman JS, et al. Does HIV testing by name deter testing? AIDS. 2000;14:1801-1808.
9. Schwarcz S, Stockman J, Delgado V, et al. Does name-based HIV reporting deter high-risk persons from HIV testing? Results from San Francisco. J Acquir Immune Defic Syndr. 2004;35:93-96.
10. Adams AL, Becker TM, Lapidus JA, et al. HIV infection risk, behaviors, and attitudes about testing: are perceptions changing? Sex Transm Dis. 2003;30:764-768.
11. California Department of Health Services, Office of AIDS. Available at:
12. Nakashima AK, Horsley R, Frey RL, et al. Effect of HIV reporting by name on use of HIV testing in publicly funded counseling and testing programs. JAMA. 1998;280:1421-1426.
13. Jayaraman GC, Preiksaitis JK, Larke B. Mandatory reporting of HIV infection and opt-out prenatal screening for HIV infection: effect on testing rates. CMAJ. 2003;168:679-682.
© 2006 Lippincott Williams & Wilkins, Inc.