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Name-based HIV reporting doesn't deter testing
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By Megan Rauscher
NEW YORK (Reuters Health) - New York State's name-based HIV reporting and partner notification law, which went into effect June 1, 2000, has not led to a decline in HIV testing or the willingness of high-risk individuals to be tested, research shows.
The law requires named reporting, by doctors and laboratories, of persons with HIV infection, HIV-related illness and AIDS. The reporting of known partners is also required, as is screening for intimate partner violence.
"A primary concern with named HIV reporting is that it might deter HIV testing behavior," Dr. James M. Tesoriero of the AIDS Institute, New York State Department of Health, Menands, noted in comments to Reuters Health. "In addition, concern was expressed that the formal integration of HIV partner notification and intimate partner violence screening into New York's law might affect HIV testing behavior."
Against this backdrop, Tesoriero and colleagues examined the effect of New York State's name-based HIV reporting and partner notification law on HIV testing levels and testing decisions by conducting in-person interviews with 761 high-risk individuals.
According to Tesoriero, "high-risk individuals were generally unaware of New York's HIV reporting law and few cited concern about named reporting as a reason for avoiding or delaying testing."
The results of the study, published online on February 28 by the American Journal of Public Health, also showed that levels of HIV testing in New York State were not impacted by the law.
"HIV reporting," Tesoriero noted, "has greatly improved the monitoring of New York's HIV/AIDS epidemic," and based on the current research, "this benefit has not been offset by decreases in HIV testing, including willingness to test among those at highest risk of acquiring HIV."
SOURCE: American Journal of Public Health, online February 28, 2008.
"Most respondents were not aware of New York's named-based HIV reporting requirement: although 47.5% of participants were aware that HIV results are reportable in some manner (data not shown), just 1 in 4 respondents (26.4%) knew that positive test results are reported by name..... Just 5.1% of all respondents cited concern about their name being reported to the government as a reason for avoiding or delaying HIV testing, with only 1 person citing this as the most important reason."
Published Ahead of Print on July 31, 2007, as 10.2105/AJPH.2006.092742
The Effect of Name-Based Reporting and Partner Notification on HIV Testing in New York State
James M. Tesoriero, PhD, Haven B. Battles, PhD, Karyn Heavner, PhD, Shu-Yin John Leung, MA, Chris Nemeth, MA, Wendy Pulver, MS, and Guthrie S. Birkhead, MD, MPH
EXTRACTS by me
A primary concern with name-based HIV reporting is that it might deter HIV testing behavior. Research from other states has yielded conflicting findings. In the late 1980s and early 1990s, several surveys of HIV testing behavior in at-risk populations suggested a deterrent effect of HIV reporting.3-6 More recent studies have found fewer or no deterrent effects. The HIV Testing Survey7 was conducted in 9 states with differing HIV reporting policies in the mid-1990s. Results indicated a low awareness of states' reporting laws among high-risk individuals in general and little evidence that HIV testing decisions were being
strongly influenced by a concern about name-based HIV reporting.8-11 However, people who lived in states with name-based HIV reporting were more likely to delay-rather than completely avoid-HIV testing,8 and concerns about name-based reporting were expressed by some men who have sex with men and intravenous drug users.8,9
ABSTRACT
Objectives. We examined the effect of New York's HIV Reporting and Partner Notification law on HIV testing levels and on the HIV testing decisions of high-risk individuals.
Methods. In-person interviews were administered to 761 high-risk individuals to assess their knowledge, attitudes, and behaviors regarding HIV testing and reporting. Trends in HIV testing were also assessed in publicly funded HIV counseling and testing programs, Medicaid, and New York's Maternal Pediatric Newborn Prevention and Care Program.
Results. High-risk individuals had limited awareness of the reporting and notification law, and few cited concern about named reporting as a reason for avoiding or delaying HIV testing. HIV testing levels, posttest counseling rates, and anonymous-to-confidential conversion rates among those who tested HIV positive were not affected by the law. Medicaid-related HIV testing rates also remained stable. HIV testing during pregnancy continued to trend upward following implementation of the law. Findings held true within demographic and risk-related subgroups.
Conclusions. HIV reporting has permitted improved monitoring of New York's HIV/AIDS epidemic. This benefit has not been offset by decreases in HIV testing behavior, including willingness to test among those at high risk of acquiring HIV.
New York State's HIV Reporting and Partner Notification (HIVRPN) law became effective June 1, 2000.18 The law requires named reporting of persons with HIV infection, HIV-related illness, and AIDS by physicians and laboratories. Physicians also are required to report known partners of infected individuals, but individuals testing HIV positive are not required to name partners for the purpose
of partner notification. An intimate partner violence screening tool must be applied for each identified partner, and partner notification may be deferred in cases where a risk of violence exists (on the part of the partner or the infected individual). Consistent with CDC guidelines for HIV case surveillance, 19 New York's law retains anonymous HIV counseling and testing to offset potential deterrent effects of HIV reporting on test-seeking behavior. Several studies have addressed the need for anonymous HIV counseling and testing, with many studies suggesting that anonymous counseling and testing may be an important component to HIV prevention, especially for certain subgroups. 11,20-24
Previous examinations of HIV reporting laws were largely limited to states with lower prevalences of HIV. In addition, concern was expressed that the formal integration of HIV partner notification and intimate partner violence screening into New York's law might affect HIV testing behavior. The implementation of the HIVRPN law provided an opportunity to assess the effect of the law, including the partner notification and intimate partner violence screening requirements, on HIV testing behaviors in a high-HIV prevalence state.
HIV Testing Attitudes and Practices Survey
We conducted surveys of at-risk individuals with a modified version of CDC's HIV Testing Survey.7 The HIV Testing Attitudes and Practices Survey assessed respondents' demographic characteristics, HIV testing experiences, knowledge of HIV testing policies and methods, sexual behavior, drug use, and HIV prevention practices. Additional questions assessed knowledge about and attitudes toward New York's HIVRPN legislation. A description of the HIV Testing Attitudes and Practices Survey methods was published elsewhere.25
The HIV Testing Attitudes and Practices Survey was administered in 4 New York cities: Buffalo (2001-2002), Rochester (2002-2003), and Syracuse and Albany (2003- 2004). Primary enrollment occurred in 3 venues: syringe exchange programs reaching intravenous drug users, sexually transmitted disease (STD) clinics reaching high-risk heterosexuals, and bars reaching men who have sex with men.
RESULTS
HIV Testing Attitudes and Practices Survey Results
Table 2 describes the HIV Testing Attitudes and Practices Survey sample characteristics and participants responses to questions assessing knowledge about the HIVRPN law and concern about name-based reporting. Multivariate odds ratios (ORs) to selected reference groups are displayed. The HIV Testing Attitudes and Practices Survey respondents were overwhelmingly men but were well represented across categories of age and race/ ethnicity. Nearly 50% of the survey respondents were interviewed in bars, and slightly more than 60% reported that their most recent HIV test took place after implementation of the HIVRPN law. Nearly 1 in 5 survey respondents reported never having been tested for HIV, with STD clinic respondents most likely to report never being tested (28.2%), followed by bar clientele (20.5%) and syringe exchange program respondents (3.7%; data not shown).
Most respondents were not aware of New York's named-based HIV reporting requirement: although 47.5% of participants were aware that HIV results are reportable in some manner (data not shown), just 1 in 4 respondents (26.4%) knew that positive test results are reported by name. Multivariate analyses revealed that venue, age group, gender, race/ethnicity, and HIV testing history were all significant predictors of knowledge: women (OR=1.84) and individuals aged 45 years and older (OR= 2.07) were significantly more likely than were men and those individuals aged 18 to 24 years to know that HIV is reportable by name. Hispanic respondents (OR=.36) and those who reported never testing for HIV (OR=.37) were significantly likely to know this fact relative to White respondents and those who tested for HIV after the law took effect (Table 2). Respondent knowledge about New York State's partner notification requirement was greater than knowledge of named HIV reporting,
with 50.6% of the sample knowing that individuals who test positive for HIV are
not required to name their partners. Knowledge varied by venue, age group, race/ ethnicity, and HIV testing history: STD clinic interviewees and Hispanic respondents were less likely to know that naming partners is voluntary (ORs=0.54 and 0.37, respectively) than were men who have sex with men and White respondents. Those who were tested for HIV before the HIVRPN law went into effect were more likely to know that naming partners is voluntary (OR=1.56) compared with those who were not tested before the law went into effect.
Nearly one third of the survey sample (30%) reported obtaining their most recent HIV test without delay. Survey respondents who reported never being tested for HIV (19%) were asked about their reasons for avoiding testing. Likewise, respondents who had delayed getting their most recent HIV test (51%) were asked about their reason(s) for delay. The reasons given for avoiding HIV testing were similar to those given for delaying testing; thus, responses were grouped together.
The last column of Table 2 shows the percentage of respondents who indicated that concern about name-based reporting was a reason for either delaying or avoiding HIV testing. Just 5.1% of all respondents cited concern about their name being reported to the government as a reason for avoiding or delaying HIV testing, with only 1 person citing this as the most important reason. Concern about name-based reporting as a reason for testing delay or avoidance differed only by HIV testing history: those who had never been tested for HIV were more likely to cite concern about their name being reported to the government as a reason for testing avoidance (OR=4.81) compared with those who had been tested previously; however, this concern might not have been specifically tied to the HIVRPN law, because just 12.3% of this group knew that HIV is reportable by name in New York State.
From Jules: "about name beig reported to govt as a reasob for delaying or avoiding HIV testing" - 7.9% in syring exchange program site; 5.1% at STD clinic; 4.0% at bar frequented by MSM. "Respondents who knew that HIV is reportable by name in NYS" - 26.4% overall.
HIV Testing Attitudes and Practices Survey respondents who had ever tested for HIV were asked if their last test was anonymous or confidential. The percentage of respondents who reported that their last HIV test was anonymous prior to the HIVRPN law (26/101=25.7%) did not differ significantly from the percentage testing anonymously after the law (121/379=31.9%). There were no statistically significant differences in the propensity to test anonymously (overall or after the law) by venue, age group, gender, or race/ethnicity (data not shown).
DISCUSSION
Previous research did not consistently establish a deterrent effect of HIV reporting policies on HIV testing behaviors. Our study addressed limitations of previous research by studying testing behavior in a high-HIV prevalence state and by investigating whether HIV name-based reporting had a differential effect on demographic and risk-related subgroups.
We used independent data sources and applied multiple methods to assess the effect of New York's HIVRPN law on HIV testing behaviors. Triangulation of research methods provided added strength to our primary finding that the HIVRPN law has not deterred HIV testing in New York State. Consistent with the HIV Testing Survey literature, HIV Testing Attitudes and Practices Survey respondents were largely unaware of the specifics of the HIVRPN law, and very few cited concern about their name being reported to the government as a reason for avoiding HIV testing. In contrast to a few studies that used HIV Testing Survey data and were conducted in other states, we found no evidence that certain subgroups were more likely to report avoiding or delaying their HIV testing decisions.
Those who were tested after the law went into effect were actually less likely to know that naming partners is voluntary, perhaps indicating that discussion of this topic during pre- and posttest counseling is confusing to some clients. This possibility is corroborated by results from a recent survey of HIV testing providers in New York State, which found that approximately one third of HIV counseling
and testing providers were unaware that naming partners was not mandatory for those testing positive for HIV.25
Analysis of HIV Counseling and Testing System, Medicaid, and Maternal Pediatric Newborn Prevention and Care Program data clearly indicated that levels of HIV testing in New York State did not decrease following implementation of the HIVRPN law. Similarly, posttest counseling rates and rates of conversion from anonymous to confidential status among individuals testing positive for HIV also remained stable. As with our HIV Testing Attitudes and Practices Survey of high-risk individuals, and contrary to some existing literature, we found no consistent evidence of a differential effect of name-based reporting on testing behavior among certain risk-related subgroups. The 1 consistent subgroup finding was that anonymous HIV testing levels decreased following implementation of the HIVRPN law. Follow-up discussions with anonymous counseling and testing program staff suggest that this long-term declining trend was attributable to increases in publicly available HIV testing options and to increases in staff time spent offering HIV testing in nonpublic testing venues, particularly jails and prisons. These HIV testing settings were not included in this analysis, but supplemental data analysis revealed that HIV testing in criminal justice settings increased consistently throughout the study period. HIV Testing Attitudes and Practices Survey data also did not show that high-risk individuals are moving toward higher rates of anonymous HIV testing: the percentage of survey respondents who reported that their most recent HIV test was anonymous before the law took effect was similar to the percentage testing anonymously afterward.
Our study has several limitations. The HIV Testing Attitudes and Practices Survey component was successful at surveying individuals at elevated risk for acquiring STDs, including HIV. However, because this component did
not employ a probability sampling method, the findings cannot be generalized beyond the sampled venues. HIV Testing Attitudes and Practices Survey data also excluded New York City sampling venues. However, comparable venues in New York City were included in the 2002 administration of the HIV Testing Survey, which found that just 8.5% of respondents cited concern about their name being reported to the government as a reason for not being tested, with fewer than 1% citing this as their primary reason.7
A primary limitation of the HIV testing trend component is that testing site-specific changes in policies and procedures during the course of the study period could not be accounted for. To minimize the effect of changes over time, we included only those testing venues and only those sites that submitted data throughout the entire study period. However, other factors, such as changes in staffing, funding levels, hours of operation, area-specific HIV testing media campaigns, and so forth, we could not control and likely accounted
for at least some of the observed decrease in anonymous HIV testing levels.
The counseling and testing data used in this study do not represent the universe of HIV testing performed in New York State. HIV testing through private physicians and health maintenance organizations is the largest source of excluded HIV testing activity. These venues account for an estimated 44% of all HIV testing conducted in the United States.31 We estimate that our data correspond to between 20% and 25% of all HIV tests conducted across New York State. This estimate was arrived at as follows. Using Behavioral Risk Factor Surveillance System data, we estimated the 1-year New York State HIV testing rate among persons aged 18 to 64 years to be about 15%.32 Applying this rate to Census 2000 data for persons aged 18 to 64 years residing in New York State
yields an estimated 1.8 million HIV tests per year. Approximately 400000 HIV tests per year were included in the 3 data sources used in our study, corresponding to about 22% of the estimated 1.8 million tests statewide. Finally, HIV Counseling and Testing System data provide the number of HIV tests performed, not the unduplicated number of individuals tested. HIV surveillance is critically important to track the HIV epidemic, guide prevention activities, and anticipate care needs. Named reporting is the preferred method for conducting surveillance.33 Our findings indicate that, in a large state with a diverse population and a high prevalence of HIV infection, the surveillance benefits associated with HIV name-based reporting are not being offset by unfavorable changes in HIV testing behaviors, including among those at high risk of acquiring HIV. These findings may help inform future discussions of this issue.
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