AIDS PATIENT CARE and STDsVolume 18, Number 1, 2004 Mary Ann Liebert, Inc.

Race/Ethnic Disparities in HIV Testing and KnowledgeAbout Treatment for HIV/AIDS: United States, 2001

SHAHUL H. EBRAHIM, M.D., Ph.D., JOHN E. ANDERSON, Ph.D., PAUL WEIDLE, Ph.D., and DAVID W. PURCELL, Ph.D.

ABSTRACT

In the United States, access to HIV care has remained suboptimal for people of color. To as-sess racial disparities in HIV testing and knowledge about treatment for HIV/AIDS in theUnited States, we analyzed the 2001 Behavioral Risk Factor Surveillance System. We obtainedthe percentage of respondents aged 18 to 64 years who: (1) were tested for HIV ever and re-cently (in the past 12 months) excluding for blood donations and (2) responded true to thestatement, There are medical treatments available that are intended to help a person who isinfected with HIV to live longer. We calculated the difference in rates of HIV testing andknowledge about treatment between blacks or Latinos compared to whites. Overall, of the162,962 respondents, 44.7% had been tested for HIV and 12.8% were tested in the past year.Overall, 86.4% answered true to the statement on treatment for HIV/AIDS. HIV testing rateswere significantly lower among whites (ever, 42.4%; recent, 10.8%) than blacks (ever, 59.7%;recent, 23.4%) or Latinos (ever 45.6%, recent 14.8%). Compared to knowledge among whites(89.6%), knowledge level was, lower among blacks (odds ratio [OR]5 0.58, 95% confidenceinterval [CI] 5 0.52, 0.64) and Latinos (OR 5 0.67, 95%CI5 0.59, 0.75) even after adjusting forsociodemographics and HIV testing status. The knowledge gap among blacks compared towhites decreased with increasing income and education. We conclude that knowledge aboutthe availability of antiretroviral treatment was high overall. Compared to whites, blacks, andlatinos had significantly higher HIV testing rates but significantly lower knowledge aboutantiretrovirals.

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INTRODUCTION

IN THE UNITED STATES, since 1996, overall AIDS-related deaths have declined and the numberof people living with HIV/AIDS has increasedlargely because of the availability and use of an-tiretroviral drugs.1,2 The probability of survivalof patients who have AIDS varies by access to aknowledgeable AIDS physician, manifestation ofdisease, age, race, transmission risk, and adher-

ence to antiretroviral drugs.3,4 While access toHIV care is good for many adults and improv-ing for others, it has remained suboptimal forblacks and Latinos, women, and heterosexu-als.2,46 In recognition of the importance of theseracial and ethnic differences, the Federal gov-ernment has made elimination of these dispari-ties a major focus of its prevention efforts as de-scribed in the National HIV Prevention StrategicPlan through 2005.7

Centers for Disease Control and Prevention, Atlanta, Georgia.

Many HIV-infected people are unaware oftheir infection status.7 Among asymptomaticHIV-infected individuals who are unaware oftheir infection, embarking on antiretroviraltreatment is dependent on access to HIV test-ing. One reason to avoid HIV testing is the fearof a positive HIV test result, and the knowl-edge about availability of treatment may de-crease such fear. 5,8,9 In addition to knowledgeabout personal risk for HIV acquisition, the be-lief that HIV testing is beneficial as an entrypoint to care and knowledge that treatment isavailable may contribute to a persons motiva-tion for getting tested for HIV.

While information is available about therates of HIV testing among the US popula-tion,10 there is little information on knowledgeabout treatment for HIV/AIDS. To assess theknowledge of the population of the UnitedStates on the availability of antiretroviral treat-ment, questions on knowledge about HIV treat-ment were included in the 2001 Behavioral RiskFactor Surveillance System,11 providing for thefirst time, national and state-level data on theextent of knowledge about HIV treatments. Inthis report, we focus on racial and ethnic disparities in the knowledge about the avail-ability of treatment to prolong life of people in-fected with HIV and compared it with infor-mation on HIV testing.

METHODS

The Behavioral Risk Factor Surveillance System (BRFSS), established in 1984, is an on-going, state-based telephone survey that gath-ers information about modifiable risk behav-iors.11 Designed to produce risk factor estimatesfor the noninstituitionalized civilian popula-tion 18 years of age or older in each state andthe United States, it provides baseline data forsetting national and state health promotion anddisease prevention objectives. All informationcollected in the BRFSS is self-reported. Thequestions are asked in English or Spanish. Theestimates from the BRFSS are computed usingsample weighting factors that adjust for differ-ences in the probability of selection and non-response. This method is designed to produceunbiased estimates for the adult population of

each state, and when aggregated, of the UnitedStates.

For this study, we analyzed the responses ofall men and women 1864 years of age to thequestions on lifetime (ever tested) and recentHIV testing (tested in the past 12 months) andon the availability of treatment for HIV/AIDS.BRFSS questions on HIV testing have beenpublished.10,11 Consistent with the definitionsused in an earlier report on HIV testing,10 inthis paper both ever and recent HIV testing ex-cludes testing done exclusively for blood do-nations. To elicit knowledge about antiretrovi-rals, a true/false question was read to therespondents as a statement: There are medicaltreatments available that are intended to helpa person who is infected with HIV to livelonger. In this paper, people who respondtrue to the above statement are considered tohave correct knowledge about the availabilityof treatment for HIV/AIDS.

The outcome measures of interest were ratesof HIV testing and knowledge about treatmentfor HIV/AIDS. First, we computed the weightedpercentage of people 18 to 64 years of age whoreported having been tested for HIV ever andrecently. Then we obtained the weighted per-centage of people who responded to the state-ment on HIV treatment true, false, do notknow/ not sure, and refused. We conductedstratified analyses for the two outcome mea-sures by selected sociodemographic variables,self-reported HIV test status, and states. To iden-tify variables that are independently associatedwith the likelihood of people 18 to 64 years ofage who knew about the availability of treat-ment for HIV/AIDS, we developed a multiplelogistic regression model in which all the so-ciodemographic variables and HIV testing sta-tus were the dependent variables.

Because we found lower levels of knowledgeabout HIV/AIDS treatment among blacks andLatinos compared to whites, we calculated theknowledge gap between these races; actual dif-ferences in percentage of blacks and Latinoswho knew about treatment for HIV/AIDScompared to whites stratified by the previouslymentioned variables. We conducted parallelanalyses to assess the gap in HIV testing. Wealso obtained state-specific rates of knowledgefor whites, blacks, and Latinos, for the states,

EBRAHIM ET AL.28

that had at least 50 respondents in each race cat-egory. We used SUDAAN (SUDAAN, ResearchTriangle Park, NC) to obtain estimates of stan-dard errors adjusted for the complex sample de-sign. A p value less than 0.05 was consideredstatistically significant for all analyses.

RESULTS

The results are based on 162,892 U.S. residentmen and women 18 to 64 years of age (repre-sentative of 172 million people) who respondedto the survey in 2001; 1489 respondents forwhom data on knowledge about HIV treat-ments were missing have been excluded from

the analysis. The sociodemographic distribu-tion of the respondents (Table 1) is comparableto that of the U.S. population.12

HIV testing

Of the total sample, excluding the HIV testsconducted during blood donation, 44.7% re-ported that they have been tested for HIV, and12.8% reported that they were tested recently.Ever-testing and recent testing rates varied sig-nificantly by age, race, and marital status (Table1). Compared to whites, both ever and recenttesting rates were significantly higher in allpopulation groups for blacks and in some pop-ulation subgroups for Latinos (Tables 1 and 2).

DISPARITIES IN HIV TESTING 29

TABLE 1. HIV TESTING AND KNOWLEDGE ABOUT HIV/AIDS TREATMENT: UNITED STATES, 2001

Distributionrespondents (%) Ever Recent % aOR (95% CI)

GenderMale 50.2 42.5 12.6b 85.6 ReferentFemale 49.8 46.9 13.0 87.2 1.16 (1.06, 1.28)

RaceWhite 69.9 42.4 10.8 89.6 ReferentBlack 10.2 59.7 23.4 80.9 0.58 (0.51, 0.66)Hispanic 13.2 45.6 14.8 78.0 0.60 (0.52, 0.70)Other 6.6 43.8 13.0 77.4 0.36 (0.30, 0.43)

Marital statusNever married 34.5 45.1 17.3 85.6 ReferentMarried 58.4 43.2 10.6 87.2 0.90 (0.79, 1.02)Divorced/widow 21.1 50.2 15.3 84.4 0.89 (0.75, 1.06)

Age (years)1824 15.4 44.0 20.0 84.2 Referent2544 47.5 55.7 14.8 87.5 1.05 (0.91, 1.20)4564 37.1 30.9 7.2 85.9 1.05 (0.91, 1.22)

Income,$25K 22.8 46.5 15.9 79.6 Referent$2550K 31.0 45.9 13.5 87.0 1.27 (1.12, 1.44)$50K1 34.3 45.2 11.0 93.2 1.91 (1.64, 2.22)Do not know/refused 11.9 36.5 10.6 76.4 0.65 (0.56, 0.76)

Education,High School 8.8 40.7 13.1 71.1 ReferentHigh school 30.6 41.3 12.6 82.1 1.38 (1.20, 1.60)Some college 28.4 47.2 13.9 90.1 2.57 (2.19, 3.02)College 32.1 47.5 11.9 93.3 3.53 (2.96, 4.21)

EmploymentNot employed 25.0 42.8 13.3 83.5 ReferentEmployed 74.8 45.5 12.6 87.6 0.99 (0.88, 1.11)

aPeople who responded True to the statement Treatment is available to help people with HIV/AIDS live longer.bNote: Differences in ever and recent HIV testing rates among population groups were significant (p , 0.05)

except for recent testing by sex.OR, adjusted odds ratios; adjusted for all the variables in the table and HIV testing; 95% CI 5 95% confidence

intervals.

HIV testing (%) Know that treatment existsa

Overall knowledge and its determinants

Of the total sample, 86.4% of respondentsstated correctly that it was true that treatmentexisted to help HIV-infected people live longer;3.3% stated that treatments did not exist. Themajority of those who did not provide the cor-rect answer stated that they did not know orwere not sure (7.7% of the total) that treatmentexisted to help HIV-infected people live longer.An additional 2.7% refused to answer the ques-tion. Knowledge increased with increasing educational level and average annual house-hold income. Statistically significant differ-

ences were found in the percentage of peoplewho knew about treatment for HIV/AIDS byrace, marital status, income, and education af-ter adjusting for sociodemographics and HIVtest status of the respondent (Table 1).

Knowledge gap

By race, blacks and Latinos had the lowestpercentage of people who knew about treat-ment for HIV/AIDS, 8.6 to 11.6 percentagepoints, respectively, less than the rate forwhites (89.6%) and this trend was statisticallysignificant for all population groups (Table 2).

EBRAHIM ET AL.30

TABLE 2. RACE/ETHNIC DIFFERENCES IN HIV TESTING AND KNOWLEDGE ABOUT HIV/AIDS TREATMENT, 2001

Ever tested for HIV (%) Knew that treatment exists (%)

Actual difference Actual differencecompared to whites compared to whites

Whites Blacks Latinos Whites Blacks Latinos

GenderMale 40.9 17.7 20.9a 88.9 28.6 211.9Female 43.8 16.8 7.7 90.3 28.8 211.2

Marital statusMarried 41.3 17.7 4.5 90.0 27.0 211.6Divorced/widowed 48.1 9.6 2.2a 87.6 28.3 29.2Never married 41.9 20.0 0.7a 89.6 29.9 212.2

Age (years)1824 42.5 18.5 20.2a 88.2 29.2 213.62544 54.9 14.1 23.4 91.1 28.8 211.54564 28.0 18.3 8.3 88.4 28.4 210.8

Income,$25K 44.5 14.7 21.6a 84.3 27.1 211.1$2550K 43.1 18.2 3.2 89.2 25.6 26.9$50K1 43.5 20.6 9.5 94.2 23.2 22.9Do not know/refused 32.8 17.3 10.8 80.9 213.2 212.7

Education,High School 41.4 11.6 25.2 75.1 29.6 26.1High school 37.7 19.1 9.1 84.5 28.9 25.8Some college 43.6 20.6 9.3 91.9 24.6 26.1College 45.9 17.7 11.3 95.3 23.8 26.4

EmploymentEmployed 43.2 18.6 1.9a 90.5 27.4 211.5Not employed 39.9 15.3 7.5 87.1 210.3 210.7

Geographic regionNortheast 39.8 22.5 13.8 90.4 24.3 214.7Midwest 37.6 21.2 9.0 89.9 26.6 27.2South 44.9 14.7 0.8a 87.3 28.5 28.7West 46.7 10.9 24.5 92.2 211.3 214.4

History of HIV testingNever 87.1 214.6 216.0Ever 93.0 26.4 26.7Tested recently 92.1 26.1 27.1

aActual differences compared to whites for blacks or Latinos within each population group were significant ( p , 0.05) both for HIV testing and knowledge, except when marked.(2) indicates lower rates among blacks and Latinos compared to whites. Other rates are higher than whites.

Knowledge gap compared to whites was gen-erally similar for men and women both amongblacks and Latinos; thus only aggregate datafor men and women are presented in Table 2.Among sociodemographic subgroups, bothamong blacks and Latinos, knowledge gapabout treatment for HIV/AIDS compared towhites was the smallest among people who hadan annual household income above $50,000and highest among those who never had anHIV test (Table 2). Among blacks, knowledgegap compared to whites narrowed with in-creasing education and income. However,among Latinos, such a pattern was noted onlyfor income.

Of note, even among blacks and Latinos whohad been tested for HIV, knowledge level wasnot higher than that among whites who hadnot been tested for HIV (Table 2). Whites inmost states had knowledge rates above 85%(highest rate, 95.0% Washington, D.C.) and infew states in the 81%85% range (Louisiana,Kentucky, Mississippi, Tennessee, Nebraska).Among blacks, among the 38 states with ade-quate sample size, knowledge rates variedfrom 66.0% in Mississippi to 91.0% in Hawaii(Fig. 1). Among Latinos, among the 43 stateswith adequate sample size, knowledge ratesvaried from 65.0% in Arkansas to 92.5% inDelaware (Fig. 1).

DISPARITIES IN HIV TESTING 31

FIG. 1. Percentage of blacks and Latinos who knew that treatment exists for HIV/AIDS, 2001.

DISCUSSION

This first population-based U.S. data onknowledge about treatment for AIDS indicateshigh knowledge level in the general population.This rate is about the same as that reported forSweden, the only other developed country thathas reported such data.13 Despite higher rates ofHIV testing among blacks and Hispanics com-pared to whites shown by this study and in pre-vious reports, we found that knowledge aboutthe availability of antiretroviral treatment wassignificantly lower among blacks and Latinos,compared to whites. The reported increase in thepercentage of people who were ever tested, fromthe mid-1980s (1987; 5%) through the mid-1990s(19951996; 38%42%),10 appears to have leveledoff (44.7% in 2001 in our study). The low per-centage of people ever tested for HIV for 1998(30%) reported based on the National Health In-terview Survey could be caused by inclusion ofresponses from older people in that analysis(39% of the respondents were aged 50 years orolder).14 The percentage of people who havebeen tested in the past year is within the 9%17%rates reported by various national surveys in the1990s.10

The populations groups identified in ourstudy as having low rates of knowledge abouttreatment for HIV/AIDS (people of color, lowsocioeconomic status) are also known to haveless knowledge and utilization of many otherhealth services including influenza vaccina-tion, cancer screening, cardiovascular care, sex-ually transmitted disease (STD) services, andprenatal care.15,16 The differences between so-cially disadvantaged and advantaged popula-tion groups may have been even wider if theBRFSS data collection methods had allowed forinclusion of population groups such as peoplewithout telephones and people who are insti-tuitionalized. The data from the BRFSS are sub-ject to social desirability bias, coverage, and re-porting errors that affect survey data. Peoplewho exhibit HIV risk behaviors may be moreknowledgeable about HIV/AIDS treatmentthan the general population and such risk in-formation is not collected by the BRFSS. Not-withstanding these examples of sampling bias,our data shed light on a fundamental aspect ofHIV/AIDS care utilization: knowledge thattreatment for HIV/AIDS exists.

We had expected that nearly all people whowere tested for HIV, irrespective of color, wouldknow about treatment for HIV. Knowledge gapamong people of color, however, existed evenamong people who had been tested for HIV. Al-though the BRFSS data cannot be used to assessthe quality and content of counseling during HIVtesting, the results from this study underscorethe need to ensure that the contact of people withthe health care system during a testing encounterbe used to educate them about fundamental as-pects of HIV/AIDS prevention and care. It is achallenge for health care providers and publichealth departments to communicate informationabout emerging treatment options to diversepopulation groups that traditionally had pooruptake of health-related messages. It has been re-ported that even among people who had aknown health care provider or health insurancecoverage, those who belong to minority popula-tions groups are less likely to hear about anti-retroviral drugs than others.4,17 Physicians maycommunicate less effectively with people oflower socioeconomic status and disadvantagedminority populations, and some populationgroups may lack trust in the medical care sys-tem, both of which adversely affect uptake of in-formation by patients.18

While it is debatable whether knowledgeabout the availability of treatment is a neces-sary factor in peoples motivation to access aparticular treatment, according to the theory ofreasoned action,19 individuals attitudes to-ward particular drugs would be expected tocontribute to their decisions to use or not usethe drug or making attempts to access suchdrugs. HIV treatment can reduce both thetransmission of infection and disability and theneed to close the gap in racial disparities withrespect to knowledge about HIV/AIDS treat-ment is clear. The United States has succeededin closing racial disparities in access to and uti-lization of care with respect to some health is-sues. For example, adequate utilization gap inprenatal care services between whites andblacks narrowed steadily through the 1980sand moved toward unity in the 1990s.16

Targeted HIV testing may have resulted inthe higher testing noted for people of colorcompared to whites in our study and in previ-ous reports which used national data.14 Popu-lation groups with lower level of HIV preva-

EBRAHIM ET AL.32

lence may not perceive themselves to be at in-creased risk for HIV, and therefore are not in-clined to seek HIV testing. However, low lev-els of education, associated with low levels ofHIV testing in our study and other studies,14 isalso associated with low levels of and knowl-edge about treatment for HIV. Drawing fromthese findings and experiences in advancingHIV prevention among most affected popula-tion groups, initiatives aimed at increasing ac-cess to antiretrovirals should make greater ef-forts to inform blacks, Latinos, and people withlow level of education about the availability ofantiretroviral treatments through innovative,varied, and culturally sensitive educationalstrategies. Current national policy emphasis onand commitment to the reduction of racial dis-parities in access to HIV/AIDS treatment, in-cluding existing efforts to remove economicbarriers to HIV/AIDS treatment, can help nar-row the knowledge gap.

ACKNOWLEDGMENTS

M.T. McKenna is thanked for his suggestionson the analysis and comments on the draft.

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Address reprint requests to:Shahul H. Ebrahim, M.D., Ph.D.

Mail Stop E37Centers for Disease Control

1600 Clifton RoadAtlanta, GA 30333

E-mail: Sbe@cdc.gov

DISPARITIES IN HIV TESTING 33

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