HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties (ACLU AIDS Project) 10/97
San Francisco AIDS Foundation Critique of HIV Names ReportingMay 1998
An HIV test is the first step a person must take to learn their health status, and take appropriate measures to stay healthy. The Centers for Disease Control & Prevention (CDC) estimates that over a third of those infected in the U.S. do not know their HIV status. The current clinical guidelines recommend initiating treatment as early in the course of disease as possible to obtain the maximum benefit. Therefore, people at risk of HIV infection should be encouraged to find out their HIV status as soon as possible after exposure to make informed treatment decisions, and any barriers to testing should be removed as quickly as possible.
Changes in the epidemic have led to increasing concern that existing AIDS surveillance efforts are becoming outdated, and a call for an expanded HIV reporting system. The San Francisco AIDS Foundation acknowledges the need for improved HIV data. However, we strongly disagree that HIV names reporting is necessary, and we do not believe that the benefits of names reporting outweigh the potential deterrence from HIV testing and/or treatment.
All Studies on HIV Names Reporting Have Shown a Deterrent Effect on HIV Testing
Research on the impact of mandatory names reporting on testing has shown that:
- A 1997 study in anonymous test sites in San Francisco found that 68% said they would not be willing to get tested if their name would be reported to the government. (Woods, 1997)
- The 1996 HIV Testing Survey (HITS) showed that 19% of those surveyed who had never been tested said that the fear that their name might be reported to the government was a factor in their decision not to get tested, after reasons such as fear of finding out, or believing that they were not at risk. For 2% fear of reporting was the main reason. (Hecht, 1997)
- The same survey reported that 18% of those who had delayed testing did so because of fear of being reported to the government, with 3% citing it as the main reason. (Hecht, 1997)
- A 1995 survey done in HIV testing centers in Los Angeles showed that 86% of participants would not have been tested if they knew that their name would be reported to the government. (Reed, 1996)
- A 1989 study in California reported that over 60% of individuals would not get tested if the results were reported. (Kegeles, 1989)
An AIDS Health Project survey in San Francisco (Woods, 1998) shows that when names reporting is explained the deterrent effect is reduced somewhat, but the majority of individuals still indicated that they would avoid testing if names reporting were implemented:
- Of the 68% who said they would not get tested if their name were reported, 12% changed their minds about getting tested once the public health benefits of reporting were explained to them, but a 58% majority continued to oppose testing.
- If the benefits were explained before the question about testing was asked, 46% reported that they would not test if names were reported.
A 1998 survey of clients of the San Francisco AIDS Foundation found that 33% of clients would have avoided testing and another 11% would have delayed it if their name were reported confidentially to a government health agency.
Few people in the HITS study reported that their worries about names reporting were the main reason they had not gotten tested earlier, but a significant number said that it had an effect on their decision. The main reasons they did not test were that they were afraid to find out, that they thought they were not at risk, or that they didn't want to think about it. Those are all very personal reasons, which anyone getting tested must consider. Although education campaigns or good counseling can help individuals think through these barriers, they are not the result of a governmental action. The reporting of names, however, is the one cause of delayed or avoided testing which the government can eliminate, by not asking for names as HIV surveillance.
The HITS study also shows that some individuals may not know whether or not their state requires names reporting. However, a lack of information on names reporting policies does not imply that those policies will have no effect on behavior once people learn what the relevant policies are in their states. The San Francisco AIDS Foundation believes that individuals should have adequate information about the policies in effect in their state when they choose to be tested so that they may make informed decisions regarding HIV testing.
The studies cited here may disagree on the degree of deterrence to testing, but they all reflect some level of deterrence.
Those at Highest Risk for HIV Infection Are Most Likely To Be Deterred From Testing By Names Reporting
Research has shown a strong deterrent effect in groups which are at high risk of infection, and when high risk groups have been compared to lower risk groups, the deterrent effect is higher for those groups at highest risk. It is also high among communities which have been disproportionately affected by HIV infection, including gay/bisexual men, African-Americans and Latinos. Many of the groups at highest risk of infection, including injection drug users, sex workers, men who have sex with men, and groups which have disproportionate rates of infection, such as African-Americans and Latinos, have a long-standing (and in many cases reasonable) distrust of government, and names reporting would only exacerbate those concerns.
- In the 1995 Los Angeles study, 91% of gay men surveyed reported that they would not get tested if there were names reporting, compared to 86% of all study participants (Reed, 1996)
- In the same study, participants who self-identified as being at high-risk were significantly more likely to avoid testing under names reporting. (Reed, 1996)
- A 1989 study from UCSF showed that names reporting would reduce the number of gay/bisexual men willing to be tested (Kegeles, 1989).
- Other studies have shown that names reporting would have a significant impact on African-American and Latino testing rates (Fordyce, 1989)
- In South Carolina, when anonymous testing was ended, the number of gay men getting tested dropped by 51%. HIV positive results dropped by 43%, suggesting that many of those who were positive were not getting tested at all (Johnson, 1988).
- In a 1992 survey 77% of gay & bisexual men reported that not wanting their name to be on a government list was one of the most important reasons for not getting tested. (Meyers, 1993)
- A 1994 study in Arizona showed that men who have sex with men delayed testing until anonymous testing was available due to a fear of being reported. It also showed a significantly higher rate of HIV infection among those who delayed testing. (Hirano, 1994)
HIV Names Reporting Will Delay, Not Improve, Access to Treatment For Many People With HIV
Names reporting would also deter individuals with HIV from accessing medical treatment for their HIV infection. The available research shows that:
- In the Los Angeles survey, 23% of those getting tested said that they would not access medical care until they became sick, if name-based reporting were implemented. (Reed, 1996)
- In the same study, when individuals who were HIV-positive were asked what they would have done had their names been reported when they accessed care, 25% said that they would have waited until they were sick, and another 36% said that they might not have accessed treatment at all. (Reed, 1996)
- The AIDS Patient Survey showed that people access care later in states with names reporting than in states without it. Specifically, CD4 counts were significantly lower in names reporting than non-names reporting states. (Bindman, 1997)
- In the same study, of those who delayed accessing care more than a month after testing positive, 10% cited fear of being reported to the government as a reason. (Bindman, 1997)
- The San Francisco AIDS Foundation 1998 Client Survey found that 12% of those surveyed said they might not have sought treatment if they knew that their name would be reported to health officials when they sought medical care, and another 29% said they would not have sought treatment unless they were very sick.
The success of new combination treatments has been used as a justification for names reporting, on the grounds that names reporting will somehow ensure access to treatments, and that expanded surveillance is needed to compensate for people with HIV not getting sick enough to be diagnosed with AIDS. In fact, one of the largest implications of the new treatments is that everyone infected with HIV should get treated as soon as possible in the course of infection, and to do that, they must know their HIV status. If names reporting serves as a barrier to testing, then we lose more than we gain. A better understanding of the epidemic is important, but not at the cost of expanding the epidemic.
Unique Identifiers: A More Sound Public Health Alternative to HIV Surveillance
The primary HIV surveillance system that is considered an alternative to names reporting is unique identifier reporting. Under such a system, an HIV-infected individual would not be reported by name to public health officials but rather by some form of a unique code that could not be traced back to the person. Unique identifiers would address some of the confidentiality concerns and HIV testing deterrence caused by name-based reporting, and still help meet the need for improved surveillance of HIV disease.
Unique identifier reporting has been seen as a potential compromise between those who strongly believe that better HIV data is needed and those who have strong public health and privacy concerns regarding HIV names reporting. Unique identifiers, if designed and implemented properly, are as specific as names in enabling unduplicated counts of people living with HIV, yet do not create a list that could potentially be used to identify individuals. Unique identifiers are currently in use in Maryland and Texas, and are under consideration in a number of other states, including Massachusetts, Washington, Hawaii, and California.
Produced by the San Francisco AIDS Foundation
Bindman, AB, et al., The AIDS Patient Survey: Assessing the Effect of State HIV Testing and Reporting Policies on the Health Care Seeking Behavior of People with AIDS. Presentation for the American Public Health Association Conference, Session 3108 (1997)
Fordyce, E, et al., Mandatory Reporting of HIV Testing Would Deter Blacks and Hispanics from Being Tested, 262 JAMA 349 (1989)
Hecht, FM, et al., Named HIV Reporting: HIV Testing Survey (HITS). Presentation for the American Public Health Association Conference, Session 3108 (1997)
Hirano, D, et al., Anonymous HIV Testing: The Impact of Availability on Demand in Arizona, 84 AJPH 2008 (1994)
Johnson, WD, et al., The Impact on Mandatory Reporting on HIV Seropositive Persons in South Carolina, Presentation for the IV International Conference on AIDS (1988)
Kegeles, S, et al., Many People Who Seek Anonymous HIV-Antibody Testing Would Avoid It Under Other Circumstances, AIDS, 1990: 4:585-588. [See abstract]
Meyers, T, et al., Factors Affecting Gay and Bisexual Men's Decisions and Intentions to Seek HIV Testing. AJPH, May 1993, Vol. 83, No. 5.
Reed, G, et al., The Impact of Mandatory Name Reporting on HIV Testing and Treatment, Poster Presentation for the XI International Conference on AIDS (1996)
San Francisco AIDS Foundation, Client Survey Report on Names Reporting, April 1998
Woods, WJ, et al., Names Reporting of HIV-Positives Would Reduce HIV Testing Among Men Who Have High-Risk Sex With Men in San Francisco, CA, Submitted to the XII World AIDS Conference (1998)
AIDS Action Committee (Boston), Creating an Effective Public Health Response to the Changing Epidemic: Moving to HIV Surveillance by Unique Identifier and Other Non-Name Based Surveillance Systems, October 1997
American Civil Liberties Union AIDS Project, HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties, October 1997
Burris, Scott, "Driving the Epidemic Underground? A New Look at Law and the Social Risk of HIV Testing," AIDS & Public Policy Journal, Summer 1997
Forbes, Anna, "Naming Names: Mandatory Name-Based HIV Reporting, Its Impact and Alternatives," AIDS Policy & Law, May 1996
Governor's Advisory Council on HIV/AIDS (Washington State), HIV Reporting Task Force Report, January 1998
San Francisco AIDS Foundation, HIV Surveillance and Reporting Statement, October 1997
Produced by the San Francisco AIDS Foundation