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HIV Testing Among Populations at Risk for HIV Infection -- Nine States, November 1995-December 1996

Please note: An erratum has been published for this article. To view the erratum, please click here.

Extending acquired immunodeficiency syndrome (AIDS) case surveillance systems to include confidential (name-based) reporting of human immunodeficiency virus (HIV) infections provides data representing recent HIV transmission patterns (1). These data may improve the ability of public health agencies to plan and evaluate HIV prevention and treatment services. Thirty-two states conduct name-based HIV infection case surveillance as an extension of AIDS case surveillance (2), and such surveillance is being considered in other states. Some community representatives and public health officials, however, are concerned that HIV infection surveillance may deter some at-risk persons from seeking HIV testing. This report describes the results of a survey conducted to assess deterrents to HIV testing in populations at risk for HIV infection during 1995 and 1996. The findings indicate that in these populations knowledge of state HIV reporting policies was low, and fear of a positive HIV test result and a lack of perceived risk for HIV infection were the most common deterrents to testing in all risk groups. However, untested men who have sex with men (MSM) who resided in states with name-based reporting cited concerns about reporting as a reason they had not tested more often than untested MSM in states without name-based reporting.

The HIV Testing Survey (HITS) was a cross-sectional study conducted among persons at risk for HIV infection in nine states with different HIV reporting policies. * MSM were recruited from gay bars; injecting-drug users (IDUs), through street outreach; and sexually active heterosexuals, through sexually transmitted disease clinics. The study was designed to recruit approximately equal numbers of persons from each of these populations in all states. Using an anonymous structured questionnaire, trained interviewers from health departments and community-based organizations assessed participants' knowledge of state HIV reporting laws, self-reported HIV testing history, and reasons for delaying testing or not being tested.

During December 1995-November 1996, 2570 eligible participants were interviewed. Of these, 200 (7.8%) reported being HIV infected and were excluded from this analysis. Of the remaining 2370 HIV-negative or untested persons, 1810 (76%) had been tested for HIV at least once. The proportion of persons who had been tested for HIV differed by risk group: 582 (68%) of 851 heterosexuals, 596 (79%) of 750 MSM, and 632 (82%) of 769 IDUs had been tested. Testing rates were the same for men and women (76% of 1774 men and 592 women); similar for non-Hispanic blacks (76% of 934), non-Hispanic whites (76% of 873), and Hispanics (75% of 444); and differed significantly by age group (persons aged 18-24 years were less likely to have been tested {68%} than persons in older age groups {range: 76%-81%}).

Most of the respondents stated that they did not know whether persons with HIV infection were reported to the health department by name: 60% in name-based reporting states, 60% in unique identifier (UI)-based reporting states, and 66% in nonreporting states. Only a small proportion of respondents knew their state's HIV reporting policy: 19% in states with name-based reporting, 12% in states with UI-based reporting, and 11% in states with neither name-based or UI-based reporting.

Respondents were asked about the likelihood of being tested for HIV infection during the next 12 months according to several scenarios. Overall, 84% of respondents stated that they were likely to get tested during the next year if they could be tested anonymously and no results were reported to the health department. Respondents were then asked their likelihood of seeking testing during the next 12 months if no anonymous testing was available and various HIV case reporting scenarios existed: no HIV reporting, 72%; UI-based HIV reporting, 73%; and name-based HIV reporting, 61%.

Respondents were asked to indicate whether each of 17 factors had contributed to not being tested (556 respondents) or to delaying testing (1810 respondents) and which of these was the main factor (Table_1). The main factors for not being tested or delaying testing were fear of learning they were HIV-positive (25% and 23%, respectively); thinking they were unlikely to have been exposed to HIV (18% and 10%); thinking that they were HIV-negative (13% and 11%); not wanting to think about the possibility of being HIV-positive (8% and 9%); and thinking there was little they could do about being HIV-positive (6% and 4%). Among persons who had not been tested, a concern about having one's name reported to the government was cited as one of the factors for not testing for 19% and was the main factor for 2% (Table_1). Concern about reporting was the main factor for not testing for 4% of untested MSM, 1% of untested IDUs, 1% of untested heterosexuals, 3% of untested non-Hispanic whites, less than 1% of untested non-Hispanic blacks, and 3% of untested Hispanics. Among persons who had been tested, the proportions of these subgroups citing concern about reporting as the main factor for delaying testing were similar (less than or equal to 4%).

Among the 556 untested persons, concern about name-based reporting was stratified by state HIV reporting policy (Table_2). A higher proportion of MSM in states with name-based reporting than in states without name-based reporting cited concern about having their name reported to the government as a factor for not testing (35% compared with 11%; pless than 0.01), but there was no difference in the frequency of concern about reporting as the main factor for not testing (3% compared with 7%, p=0.4).

Reported by: FM Hecht, MD, AB Bindman, MD, D Osmond, PhD, K Vranizan, MA, S Colman, PhD, D Keane, MPH, MA Chesney, PhD, Univ of California, San Francisco. AL Reingold, MD, Univ of California, Berkeley. Div of HIV/AIDS Prevention-Surveillance and Epidemiology, National Center for HIV, STD, and TB Prevention, CDC.

Editorial Note

Editorial Note: The findings in this report indicate that, although the proportion of respondents that had been tested was high (76%), most reported at least some delay before getting tested. Fear of learning that one is infected with HIV and the belief that one is unlikely to have been exposed to HIV were cited most frequently as factors for delaying testing or not testing. Reducing fear and increasing knowledge about HIV risk present ongoing challenges to designing effective prevention programs.

Although concern about having one's name reported to the government was a less commonly cited factor for not testing or delaying testing for HIV infection, the findings suggest that state HIV reporting policies may deter or delay some persons, particularly MSM, from being tested. The effect of HIV-infection reporting policies on actual testing may be limited because in this study most respondents did not know their state's HIV reporting policy and because the implementation of name-based HIV reporting policies also does not appear to have a significant effect on use of publicly funded counseling and testing programs (3). However, any potential deterrent effect on HIV testing among MSM or other at-risk populations (e.g., racial/ethnic minorities) is important. The findings in this report support the importance of addressing privacy concerns both in states that are considering implementing name-based HIV reporting and in states that already have adopted such policies. CDC and the Council of State and Territorial Epidemiologists are promoting development of model privacy statutes, which will strengthen current state confidentiality protections. In addition, CDC requires standardized security measures for all recipients of CDC HIV/AIDS surveillance funds and continues to provide technical assistance to all states to monitor the effect of changes in HIV testing and reporting policies on testing behaviors.

In this study, respondents reported they would be more likely to seek future testing if an anonymous HIV test option were available. Persons who recognize their risk, seek early HIV testing, and receive counseling can modify their behavior to reduce HIV transmission and seek medical care and other services that promote health and improve survival. Maintaining access to anonymous HIV testing is an important option for some persons at high risk for HIV infection (4), and CDC strongly recommends that all states provide publicly funded anonymous HIV testing and counseling.

The findings in this report are subject to at least four limitations. First, the study was not population-based; it was designed to enroll equal proportions of each of three groups recruited from specific venues and it may not represent all at-risk populations or their distribution in the general population. Second, findings from the nine states included in the survey may not be generalizable to all other states. Third, stated intentions by respondents in this survey may not reflect actual behaviors in obtaining testing for HIV infection. Finally, the beneficial effects of recently available therapies (5,6) or increased knowledge about state HIV reporting policies (7) may alter current test-seeking behavior.

HITS and related studies and analyses (3,4,8-10) were conducted to enhance the scientific basis for public health policy on HIV case surveillance. To monitor the effect of changes in HIV reporting policies on HIV testing behaviors, studies similar to HITS will be conducted in additional states. CDC will continue to provide technical assistance to state and local health departments so that they, in collaboration with public health organizations, health-care providers, and representatives of affected communities, can adopt effective HIV/AIDS surveillance practices that continue to protect confidentiality and permit an effective public health response to the epidemic.

References

  1. CDC. Update: trends in AIDS incidence -- United States, 1996. MMWR 1997;46:861-7.

  2. CDC. HIV/AIDS surveillance report. Atlanta, Georgia: US Department of Health and Human Services, Public Health Service, CDC, 1997;(vol 9, no. 2).

  3. Nakashima AK, Horsley R, Frey R, et al. Effect of HIV reporting by name on the use of HIV testing in publicly funded counseling and testing programs. JAMA 1998;280:1421-6.

  4. Bindman AB, Osmond D, Hecht FM, et al. A multistate evaluation of anonymous HIV testing and access to medical care. JAMA 1998;280:1416-20.

  5. CDC. Report of the NIH panel to define principles of therapy of HIV infection. MMWR 1998;47(no. RR-5).

  6. CDC. Guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents. MMWR 1998;47(no. RR-5).

  7. US Department of Health and Human Services, CDC. Draft guidelines for HIV case surveillance, including monitoring HIV infection and acquired immunodeficiency syndrome (AIDS). Federal Register 1998;63:68289.

  8. CDC. Diagnosis and reporting of HIV and AIDS in states with integrated HIV and AIDS surveillance -- United States, January 1994-June 1997. MMWR 1998;47:309-14.

  9. CDC. Evaluation of HIV case surveillance through the use of non-name unique identifiers -- Maryland and Texas, 1994-1996. MMWR 1998;46: 1254-8,1271.

  10. Gostin LO, Lazzarini Z, Neslund VS, Osterholm MT. The public health information infrastructure: a national review of the law on health information privacy. JAMA 1996;275:1921-7.

Name-based HIV case surveillance was conducted in Arizona, Colorado, Mississippi, Missouri, and North Carolina (patient names are not reported to CDC); unique identifier (UI)-based HIV case surveillance was conducted in Maryland and Texas; neither name-based nor UI-based HIV case surveillance was conducted in New Mexico and Oregon during the study period. All states except Mississippi offered publicly funded anonymous HIV testing and counseling.



Table_1
Note: To print large tables and graphs users may have to change their printer settings to landscape and use a small font size.
                                                                                                                                                                                                                                           
TABLE 1. Percentage of untested respondents reporting factors* for not testing for HIV, and percentage of tested respondents                                                                                                                                 
reporting factors* for delaying testing, by HIV risk factor -- HIV Testing Survey,+ December 1995-November 1996                                                                                                                                              
===========================================================================================================================================================                                                                                                  
                                             Men who have sex                                                                                                                                                                                                
                                                 with men         Heterosexual     Injecting-drug user       Total&                                                                                                                                          
                                             ----------------   -----------------  ------------------- -----------------                                                                                                                                     
                                                A       Main       A        Main       A       Main       A        Main                                                                                                                                      
Testing status/Factor                        factor    factor   factor     factor   factor    factor   factor     factor                                                                                                                                     
------------------------------------------------------------------------------------------------------------------------                                                                                                                                     
Not testing@                                     (n=151)             (n=269)            (n=136)              (n=556)                                                                                                                                         
  Afraid to find out                           59        27       41         21       51        30       48         25                                                                                                                                       
  Unlikely to have been exposed                52        17       48         25       25         7       44         18                                                                                                                                       
  Thought they were HIV negative               57        19       49         15       33         6       47         13                                                                                                                                       
  Didn't want to think about being positive    55         7       42          8       54        10       48          8                                                                                                                                       
  Could do little if HIV positive              45         9       19          3       40         7       31          6                                                                                                                                       
  Didn't have time                             14         3       20          4       20         5       19          4                                                                                                                                       
  Unsure where to go                           15         2       21          4       32         6       22          4                                                                                                                                       
  Worried name would be reported               28         4       13          1       18         1       19          2                                                                                                                                       
  Test costs too much                           5         2        5         <1       17                                                                                                                                                                  
  People might think you have AIDS             27         1       10         <1                                                                                                                                                                           
                                                                                                                                                                                                                                                             
Delaying testing**                               (n=596)             (n=582)            (n=632)             (n=1810)                                                                                                                                         
  Afraid to find out                           53        26       38         18       47        24       46         23                                                                                                                                       
  Thought they were HIV negative               41        10       45         13       36         9       41         11                                                                                                                                       
  Unlikely to have been exposed                29         9       34         14       25         6       29         10                                                                                                                                       
  Didn't want to think about being positive    49         8       42          8       49        10       47          9                                                                                                                                       
  Didn't have time                             16         5       16          6       18         5       17          5                                                                                                                                       
  Could do little if HIV positive              22         2       18          3       31         6       24          4                                                                                                                                       
  Waiting for results would be hard            38         7       22          3       28         3       30          4                                                                                                                                       
  Afraid of needle used to draw blood          15         4       16          4        7        <                                                                                                                                                         
  Worried name would be reported               22         4       11         <1                                                                                                                                                                           
  Worried about who would learn results        25         3       15          1       19         1       20          2                                                                                                                                       
------------------------------------------------------------------------------------------------------------------------                                                                                                                                     
 * Data presented for the 10 most frequently cited factors of 17 listed in the survey.                                                                                                                                                                       
 + Survey was conducted in Arizona, Colorado, Maryland, Mississippi, Missouri, New Mexico, North Carolina, Oregon, and Texas.                                                                                                                                
 & The totals are based on unweighted data from all participants included in this analysis; data do not represent the general population or a weighted                                                                                                       
   average of populations at increased risk for HIV infection.                                                                                                                                                                                               
 @ Main factors do not sum to 100% because 10 of 17 factors are presented and 62 (11%) of 556 untested respondents cited no factors for not testing.                                                                                                         
** Main factors do not sum to 100% because 10 of 17 factors are presented and 374 (21%) of 1810 tested respondents cited no factors for delaying testing.                                                                                                    
===========================================================================================================================================================                                                                                                  

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Table_2
Note: To print large tables and graphs users may have to change their printer settings to landscape and use a small font size.
                                                                                                                                                                                                                                           
TABLE 2. Frequency of concern about having one's name reported to the government                                                                                                                                                                             
as a factor for not testing for HIV infection, by state HIV reporting policy -- HIV Testing                                                                                                                                                                  
Survey,* December 1995-November 1996                                                                                                                                                                                                                         
=================================================================================================                                                                                                                                                            
                         Named      Non-named+                                                                                                                                                                                                               
                     ------------   ----------                                                                                                                                                                                                               
Characteristics       No.     (%)   No.    (%)  p value&                                                                                                                                                                                                     
---------------------------------------------------------                                                                                                                                                                                                    
Men who have sex                                                                                                                                                                                                                                             
  with men            107            44                                                                                                                                                                                                                      
  A factor             38    (35)     5   (11)   <                                                                                                                                                                                                        
  Main factor           3    ( 3)     3   ( 7)    0.4                                                                                                                                                                                                        
                                                                                                                                                                                                                                                             
Heterosexual          177            92                                                                                                                                                                                                                      
  A factor             22    (13)    14   (15)    0.5                                                                                                                                                                                                        
  Main factor           3    ( 2)     1   ( 1)    1                                                                                                                                                                                                          
                                                                                                                                                                                                                                                             
Injecting-drug user    66            70                                                                                                                                                                                                                      
  A factor             14    (21)    10   (14)    0.3                                                                                                                                                                                                        
  Main factor           2    ( 3)     0   ( 0)    0.2                                                                                                                                                                                                        
                                                                                                                                                                                                                                                             
Total@                350           206                                                                                                                                                                                                                      
  A factor             74    (21)    29   (14)    0.05                                                                                                                                                                                                       
  Main factor           8    ( 2)     4   ( 2)    1                                                                                                                                                                                                          
---------------------------------------------------------                                                                                                                                                                                                    
* Name-based HIV case surveillance was conducted in Arizona, Colorado, Mississippi, Missouri,                                                                                                                                                                
  and North Carolina (patient names are not reported to CDC); unique identifier (UI)-based HIV                                                                                                                                                               
  case surveillance was conducted in Maryland and Texas; neither name-based nor UI-based                                                                                                                                                                     
  HIV case surveillance was conducted in New Mexico and Oregon during the study period.                                                                                                                                                                      
+ UI-based reporting was implemented during the year preceding the study in Maryland and                                                                                                                                                                     
  Texas; 67% of tested respondents in these states had been tested at least once before this                                                                                                                                                                 
  policy change. Because of the state reporting policy changes and to avoid small cell sizes in                                                                                                                                                              
  the analysis restricted to the minority of respondents who had never been tested, UI-based                                                                                                                                                                 
  reporting and nonreporting states were combined in the non-named reporting category.                                                                                                                                                                       
& Fisher's exact test.                                                                                                                                                                                                                                       
@ The totals are based on unweighted data from all participants included in this analysis; data                                                                                                                                                              
  do not represent the general population or a weighted average of populations at increased                                                                                                                                                                  
  risk for HIV infection.                                                                                                                                                                                                                                    
=================================================================================================                                                                                                                                                            

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