StigmaIssues

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Racial/Ethnic HIV/AIDS Disparities And Stigma THE DATA AND THE DILEMMA Spencer Lieb, MPH Senior Epidemiologist Bureau of HIV/AIDS Stigma issues revised .ppt 2/18/05

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Blacks Are at Increased Risk for Many Adverse Health Outcomes, Including… Diabetes. Infant mortality. Hypertension. Cardiovascular disease. Obesity. HIV/AIDS. Question: Why would HIV/AIDS tend to be associated with stigma more so than the other conditions?

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The Nature of the HIV/AIDS Data The data are supposed to drive our HIV prevention, early intervention and patient care programs. Yet, the data can seem cold and heartless. The behaviors associated with the modes of HIV transmission cause discomfort, disapproval, or condemnation by some people. STIGMA: Stereotyping leads some people to attribute HIV risk behaviors to ALL members of a given race/ethnicity, especially if that group is known to be at increased risk for HIV.

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THE DILEMMA A dilemma arises from the necessity to publicize and use the HIV/AIDS data versus our desire to be empathetic about disparities. Documentation and social marketing of HIV/AIDS and STD racial/ethnic disparities have an upside (increasing awareness and refocusing resources) and a downside (inadvertently causing stigma). How can we minimize stigmatizing the highest at-risk populations while addressing their needs?

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Consistency and Credibility Of the HIV/AIDS Data There is evidence of a disproportionate impact of HIV/AIDS on non-Hispanic blacks… Across age and sex groups. Across risk groups. Across numerous epidemiologic studies. Across wide geographic areas: Florida’s 17 Partnerships. Virtually all states.

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Multiple Sources of Data Tend to Corroborate Disparities Centers for Disease Control & Prevention Florida HIV/AIDS Reporting System (HARS) Florida Vital Statistics STD Management Information System Young Men’s Survey (YMS) Survey in Childbearing Women (historical data) Epidemiologic Studies

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HIV/AIDS information is reported uniformly in the U.S. Studies indicate that the demographic data are highly complete and reliable, while the risk data tend to be less complete, but sufficiently reliable for meaningful analysis.

Multiple Reporting Sources of HIV/AIDS Cases: 

Private MDs Medical Records Death Certificates Laboratories Medical Examiners Counseling & Testing Sites Correctional Facilities Hospitals (ICD-9), Billing Data HIV Patient Care Clinics Registries (e.g., AZT, TB, Cancer) Multiple Reporting Sources of HIV/AIDS Cases Comment: Most diseases rely on “passive” surveillance for case finding. Surveillance for HIV/AIDS is both “active” and passive, with workers specifically dedicated to case finding and/or epidemiologic follow-up, resulting in a very high completeness of reporting and decent classification of exposure (risk) category.

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“The reason for collecting, analyzing and disseminating information on a disease is to control that disease. Collection and analysis should not be allowed to consume resources if action does not follow.” --Foege WH et al. Int. J of Epidemiology 1976; 5:29-37

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Percentage of Adult AIDS Cases by Race/Ethnicity And Year of Report, Florida, 1988-2003 *Other includes American Indian/Alaska Native, Asian/Pacific Islander, and multi-racial. Comment: Throughout the 1980’s, AIDS cases among whites predominated. In 1993, blacks surpassed whites. Hispanic cases increased from 12% in 1988 to 18% in 2003. Since the proportion of cases among blacks from 1988-2003 greatly exceeds the proportion of blacks in the population (approx. 13%), the racial/ethnic disparity has been progressively pronounced. Among females, the disparity is even greater (consistently >70% of cases among blacks). Increasingly, a diagnosis of AIDS reflects treatment issues, e.g., late diagnosis of HIV, access to/acceptance of care, and adherence/viral resistance.

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AIDS Cases and Population, Florida Adult AIDS Cases by Race/Ethnicity 2003 (N=5,083) 2000 Adult Population By Race/Ethnicity (N=13,361,579) Comment: In this snapshot of 2003, blacks are over-represented among the AIDS cases, accounting for 53% of adult cases, but only 13% of the adult population. *Other includes Asian/Pacific Islanders and Native Alaskans/American Indians White Black Hispanic

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HIV Cases and Population, Florida Adult HIV Cases by Race/Ethnicity 2003 (N=5,641) 2000 Adult Population By Race/Ethnicity (N=13,361,579) Comment: The racial/ethnic demographic profile of HIV (not AIDS) cases in 2003 is virtually identical to that of the AIDS cases. *Other includes Asian/Pacific Islanders and Native Alaskans/American Indians White Black Hispanic

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Reported AIDS Case Rates per 100,000 Population By Sex and Race/Ethnicity, Florida, 2003 Comment: Among black males, the AIDS case rate is 7 times higher than among white males. Among black females, the AIDS case rate is 23-fold greater than among white females. Hispanic male rates are 2 times higher and Hispanic female rates are 3 times higher than the rates among their white counterparts. (Case rates among Asian/Pacific Islanders and American Indian/Alaska Native are highly unstable and not shown, being based on 8 and 1 cases, respectively. However, there is reason to suspect that American Indian cases are misclassified to some extent and therefore underreported.) MALES Rate ratios Blacks:Whites, 7:1 Hispanics:Whites, 2:1 FEMALES Rate ratios Black:Whites, 23:1 Hispanics:Whites, 3:1

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Resident HIV/AIDS Death Rates Per 100,000 Population, by Race/Ethnicity, Florida, 2003 MALES Rate ratios Blacks:Whites, 8:1 Hispanics:Whites, 2:1 FEMALES Rate ratios Black:Whites, 27:1 Hispanics:Whites, 1:1 Comment: In 2003, black males were 8 times as likely as white males to die of HIV/AIDS. The HIV/AIDS death rate among black females was 27 times higher than that among white females. These rate ratios are very similar to the AIDS case rate ratios (previous slide), even though they are derived from an independent data set. Source: Office of Vital Statistics

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Median Time from AIDS Diagnosis to Death By Race/Ethnicity in 3 Time Periods, Florida Year of Death 1980- 1990- 1997- 1989 1996 2003 White 6 mo. 17 mo. 40 mo. Black 2 mo. 12 mo. 28 mo. Hispanic 5 mo. 14 mo. 31 mo. Comment: Overall, survival time is increasing as we move through the period of AZT and improved prophylaxis, toward the era of HAART. However, blacks are consistently at a disadvantage, suggesting a later diagnosis of AIDS than whites or Hispanics, as their median survival time subsequent to an AIDS diagnosis is shorter. Other factors for the disparity may be differential access to and/or acceptance of care. The median is the middle value in a series of numbers.

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MSM PLWHAs* According to Whether They Indicated Sex with Female Partner(s), By Race/Ethnicity Florida, Through 2003 N=16,146 N=7,213 N=9,312 White, non-Hispanic Black, non-Hispanic Hispanic Comment: A substantial proportion of MSM living with HIV/AIDS are bisexual, especially non-Hispanic blacks (53%). A male’s bisexuality may not be known to his female sex partner, though surveillance workers may be privy to the information. The following slide helps assess the extent of the non-disclosure (“closeting”) problem. *MSM includes MSM and MSM/IDUs. PLWHAs=persons living with HIV/AIDS NIRs have been redistributed into recognized exposure categories in this and the next slide.

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Female PLWHAs By Race/Ethnicity And Expanded Mode of Exposure Florida, Data Through 2003 White, non-Hispanic N=3,689 Black, non-Hispanic N=15,761 Hispanic N=2,572) Comment: Here, female heterosexual PLWHAs are subdivided into sex with a male IDU, an MSM, or an HIV+ male, risk unspecified. Known transmission to females from the bridge population of MSM is only 5% among whites, 4% among blacks, and 5% among Hispanics. In view of the data in the previous male bisexual slide (i.e., high numbers and proportions of MSM for whom sex both with males and females was documented), these data suggest that many female PLWHAs may have been unaware of their partner’s MSM risk at the time of exposure or diagnosis.

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Reported PLWHAs, by Race/Ethnicity Florida, Through 2003 Comment: Through 2003, in Florida there were a total of 69,928 reported persons living with HIV/AIDS (PLWHAs), or 0.44% of the total population. This translates to a statement that “1 in 229 residents were reported to be living with HIV or AIDS as of the end of 2003”. These data are shown broken down by race/ethnicity: 1 in 499 whites, 1 in 62 blacks, and 1 in 225 Hispanics. Since HIV is not uniformly distributed, the disparities are more pronounced in certain counties. *Other includes American Indian/Alaska Native, Asian/Pacific Islander, and Multi-racial. Data as of 12/31/04 [This PLWHA analysis represents hard data, not estimates.] A B C D E F

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Reported PLWHAs, by Race/Ethnicity Palm Beach County, Through 2003 Comment: In Palm Beach County, through 2003, there were a total of 6,556 reported persons living with HIV/AIDS (PLWHAs), or 0.58% of the total population. This translates to a statement that “1 in 173 Palm Beach County residents were reported to be living with HIV or AIDS as of the end of 2003”. These data are shown broken down by race/ethnicity: 1 in 492 whites, 1 in 35 blacks, and 1 in 244 Hispanics. (Raw data like these are available to any requestor, who could then compute “one-in” statements.) *Other includes American Indian/Alaska Native, Asian/Pacific Islander, and Multi-racial. [Example of a county-specific analysis of PLWHA data.]

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What If White PLWHAs Are Differentially Underreported? PLWHA Rates Per 100,000 Population, Two Scenarios By Race/Ethnicity, Florida, 2003 SCENARIO A* 1 in 499 whites 1 in 62 blacks 1 in 225 Hispanics Rate ratios Blacks:whites, 8.0:1 Hispanics:whites, 2.2:1 SCENARIO B** 1 in 205 whites 1 in 62 blacks 1 in 225 Hispanics Rate ratios Blacks:whites, 3.3:1 Hispanics:whites, 0.9:1 *Scenario A describes the current actual state of affairs, and assumes there is no underreporting of cases among the racial/ethnic groups. **Scenario B assumes maximum possible degree of underreporting of HIV/AIDS cases among whites, i.e. that all undiagnosed or unreported persons living with HIV/AIDS are assigned to the non-Hispanic white category. Black-to-white disparities still persist (rates are 3.3-fold higher among blacks than whites). This highly unlikely scenario provides evidence that even if white PLWHAs are much more successful in evading detection, the burden on blacks is still much greater.

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Counseling and Testing Data By Race/Ethnicity Florida, 2003 Comment: The HIV positivity rate among blacks is 2.6 times higher than that among whites. The Hispanic rate is 1.4 times higher than the white rate. (These numbers apply to the number of tests, not the number of persons taking the test, as duplicates have not been excluded yet.)

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STD Rates Per 100,000 Population* By Race/Ethnicity, Florida, 2003 Comment: Racial/ethnic disparities are evident in the non-HIV STD data.

Florida: 

Florida Percentage Living Below the Poverty Level White 9.5% Black 25.9% Hispanic 17.9% Other* 18.7% *Other includes Asian/Pacific Islanders and Alaskan Natives/American Indians. Source: 2000 U.S. Census. Poverty level is an important SES indicator associated with the occurrence of a number of diseases, including HIV/AIDS.  

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HIV/AIDS Conspiracy Beliefs Endorsed by African Americans* % Agree Strongly or Somewhat HIV drugs save lives among blacks. 38% Much information about AIDS is withheld. 59% HIV is a man-made virus. 48% There is a cure for AIDS, but it is being withheld from the poor. 53% _________________________ *Bogart and Thorburn. JAIDS. 2005; 38:213-218. A random national survey of 500 African Americans. (Men reported significantly stronger conspiracy beliefs than women.)

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HIV/AIDS Conspiracy Beliefs Endorsed by African Americans* (Continued) % Agree Strongly or Somewhat The government is telling the truth about AIDS . 37% People who take the new HIV drugs are guinea pigs for the government. 44% AIDS was produced in a government lab. 27% _________________________ *Bogart and Thorburn. JAIDS. 2005; 38:213-218. (Men who held stronger conspiracy beliefs were less likely to use condoms consistently.)

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THE DILEMMA REVISITED Documentation and social marketing of HIV/AIDS and STD racial/ethnic disparities have an upside (increasing awareness and refocusing resources) and a downside (inadvertently causing stigma). How can we minimize stigmatizing the highest at-risk populations while addressing their needs? Despite the data, HIV/AIDS conspiracy beliefs evidently undermine HIV prevention measures and probably discourage acceptance of care. How should such beliefs be countered?

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Factors Affecting HIV/AIDS Disparities -Pre-existing density of HIV in the community. Late diagnosis of HIV or AIDS. Access to/acceptance of care; HIV/AIDS conspiracy beliefs. Delayed prevention messages to minorities (considered a gay, white male disease for a long time). Non-HIV STDs in the community. Complex matrix of factors related to socioeconomic status. Which clarifications are helpful? Do any of them potentially promote stigma? Non-disclosure (closeting) of MSM risk to female partners. Prevalence of injection drug use. Incarceration. It is not one’s race/ethnicity that puts one at risk.

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Spencer Lieb, MPH 850-245-4448 spencer_lieb@doh.state.fl.us Department of Health Bureau of HIV/AIDS http://www.doh.state.fl.us/disease_ctrl/aids (Website)