|
HIV Prevention and Intervention
HIV Prevention and Intervention in the African-American Community: A Public Health Perspective
Published November 1998
Robert E. Fullilove, MD, Columbia University.
Mindy Thompson Fullilove, MD, Columbia University.
Introduction
Race As a Risk Factor
What Is Really Going On?
HIV Transmission in Poor Communities of Color
Prevention Priorities
Beyond HIV Prevention in Minority Communities
References
Table 1. HIV/AIDS Cases in the United States, New York City, Detroit, and Chicago in 1996
Introduction
This chapter examines issues of HIV prevention among African Americans. Since the inception of the HIV/AIDS epidemic in this country, blacks have been disproportionately represented among reported cases of AIDS; in 1995-1996, for example, they accounted for 40% of the cumulative cases of AIDS reported that year.(1) Understanding the dynamics of the epidemic among blacks and developing programs to prevent the continued spread of HIV infection are, therefore, top public health priorities. The creation of effective interventions poses significant challenges, however. Is "race" a factor in the design of such programs? If so, what are the links in the causal chain that connect "race" -- a descriptive variable used to classify humans according to the possession of certain physical traits -- with the risk behavior that result in the transmission of HIV? How does a variable that is typically used to sort human beings into groups cause individuals to make choices that may result in exposure to HIV?
Is it possible that a predisposition to sexual risk taking or risky drug use is inherited in the same manner that racial characteristics such a skin color or hair texture are inherited? However absurd the question may be, it serves the useful purpose of forcing a closer examination of the often unexamined assumptions behind efforts to explain HIV/AIDS in racial terms. If "race-based" risk taking strategies exist, understanding how they influence an individual's thoughts and actions would be instrumental in the development of appropriate prevention interventions.
Race As a Risk Factor
However difficult to explain, a statistical portrait of race and AIDS cases in the United States reveals significant, dramatic differences in the manner in which HIV disease has affected blacks, whites, Hispanics, and others in this country. For each year that the Centers for Disease Control (CDC) has tracked the course of the epidemic, blacks and Latinos have been disproportionately represented among the cases reported in each reporting period. Between 1981 and 1987, blacks, who constitute 12% of the U.S. population, accounted for 25% of the total number of persons with AIDS. Between 1988 and 1992, this proportion grew to 31% of all cases, and between 1993 and 1995, the proportion had increased to 38%.(1)
The distribution of cases by exposure category also reveals distinct differences between blacks and whites. In 1996, men who have sex with men accounted for 76% of the cumulative AIDS cases among white men. Among black men, by contrast, cases related to same-sex sexual relations accounted for 39% of all cumulative cases, a rate slightly less than half that of whites. Although gay men of color are significantly affected by the epidemic, HIV/AIDS among African Americans is distinctly heterosexual.
Similar differences by race are observed in the findings reported for other exposure categories. Injection drug use accounted for 9% of all cases among white men in the United States as of June of 1996, but accounted for 36% of the cases reported among black men. Among women, differences between blacks and whites by exposure category were not as pronounced, but in 1996, black women accounted for more than 54% of all AIDS cases among women in the United States.(1)
Studies conducted by the CDC also suggest that blacks are disproportionately represented among American who are infected with HIV but who do not have an AIDS-defining diagnosis. The results of a series of analyses using a statistical modeling technique called "back calculation," a method for estimating previous rates of HIV infection based on current AIDS cases, suggest that in 1992, rates of HIV infection among blacks were 5 to 7 times those of whites.(2) In sum, results of these and numerous other analyses appear to establish a strong association between race and AIDS cases or rates of HIV infection.(3)
One of the most common assumptions advanced to explain this association is that race is a proxy for a variety of factors ranging from poverty and discrimination to culture and place of residence.(4, 5) "Black race" is also thought to be a risk marker for increased likelihood of injection drug use. According to the National Household Survey on Drug Abuse, for example, illicit drug use is approximately twice as prevalent among African American respondents the Survey than among whites,(6) and much more likely to be reported among survey respondents from poor, predominantly minority inner-city neighborhoods.(7, 8) These finding suggest that race and place of residence constitute an important factor in the dynamics of HIV transmission; however, the precise way that these two factors interact requires further examination.
What Is Really Going On?
One summary states: "The trick in AIDS epidemiology is to find the grouping strategy that best accounts for the odd distribution of AIDS cases among people and places in the U.S. Not enough time is being spent explaining why these cases aren't more uniformly distributed among all the places in the U.S. where people use drugs and engage in risky sex. The data on this point are clear: HIV/AIDS, like so much morbidity and mortality in this country, is a disease of the social geography of the American people, concentrated in our most marginalized populations in our most marginalized population centers."(9)
Gould and Wallace(10) and other AIDS geographers have frequently insisted on the importance of studying the regional, state, and neighborhood variations in HIV/AIDS cases. The case distribution demonstrates distinct patterns of geographic concentration with four states (California, New York, Florida, and New Jersey) accounting for more than 50% of the cumulative cases reported in the United States.(1) Moreover, New York City, which accounts for approximately 3% of the nation's adult population, reports approximately 16% of the nation's AIDS cases, with 71% of these being reported among people of color.(11)
By contrast, a number of U.S. cities with significant minority populations (eg, Chicago and Detroit) report AIDS case rates that are not only lower than New York City's, they are also lower than the national rate for municipalities with a population of 500,000 or more (Table 1).(1)
New York City provides further evidence of the neighborhood character of the social geography of AIDS. In largely minority neighborhoods such as Central Harlem, Bedford Stuyvesant, and the South Bronx, rates of reported HIV/AIDS cases are 5 to 7 times those of New York City as a whole. This concentration of cases in certain neighborhoods is significant: it suggests that what is ostensibly a "racial" epidemic nationally is, in actuality, an epidemic within a comparatively small number of neighborhoods of color in a comparatively small number of urban centers in the United States. As the CDC noted in 1995, "Individuals are not at risk just because they are a member of a racial or ethnic minority group -- these statistics reflect the fact that minority populations are disporportionately represented in communities that have a high incidence of HIV infection."(12)
HIV Transmission in Poor Communities of Color
What are the unique features of these communities, particularly those in New York City, that help to explain this disproportionate concentration of AIDS cases? Wallace at al,(13) in numerous studies examining this phenomenon, has been particularly interested in "deurbanization" -- defined here as the set of physical and social processes that lead to urban decay -- and the high rates of HIV transmission in neighborhoods such as the South Bronx in New York City. His research has focussed particular attention on the interaction of three related trends: the increasing concentration of poor people in already impoverished neighborhoods, the increasing numbers of overcrowded dwellings in these neighborhoods, and the high levels of residential mobility and social instability among residents of these neighborhoods. The mobility of individuals engaging in HIV risk behaviors is particularly important because their movements through various social, sexual, and drug using networks may provide the means for maintaining epidemic levels of HIV dissemination and introducing the virus to new "susceptibles" in networks beyond the confines of the neighborhoods where the epidemic is currently confined.
The South Bronx offers an important glimpse into such processes. During the 1970s, a series of catastrophic housing fires resulted in the loss of a significant proportion of the housing in that borough's poorest minority communities. In the early 1970s, New York City's decision to reduce its firefighting force in 33 largely poor minority neighborhoods as a cost-saving measure dramatically reduced the City's capacity to contain serious building fires in those areas. Following these cuts, a significant portion of the South Bronx underwent a "hollowing out" as the result of a series of devastating fires that raged throughout the Bronx between 1972 and 1976. Numerous businesses and dwelling were destroyed and a significant wave of migration out of the borough ensued. In total, this "contagious urban destruction," as Wallace(9) described it, resulted in the loss of approximately 55 to 81% of the occupied housing units in the Bronx's 62 contiguous health areas.(14)
One consequence of this destruction was that large segments of the borough's population that remained in the Bronx were forced to crowd into already overcrowded dwellings in other neighborhoods. During the late 1970s, HIV infection was probably prevalent among many needle-sharing injection drug users who were uprooted from their neighborhoods by the process of housing loss and resettlement. As Wallace(9) states:
"Evidently the city's program of what Duryea (Chair of the New York State Assembly Task Force on Urban Fire Protection) called "planned shrinkage" and Mega (1978) called fire service "redlining" for the Bronx drastically changed the geography of drug abuse from being tightly and centrally distributed in the traditional poverty communities of the South-Central Bronx into a split and bifurcated pattern covering a much larger area, and embedded in badly disorganized "community" of displaced and disoriented refugees whose social networks appear to have been seriously truncated by the process of displacement. ...In fact, the city's planned shrinkage program seems to have significantly spread AIDS in the Bronx by driving intravenous drug abuse from a relatively well-defined center in the South-Central Bronx to an almost borough-wide phenomenon."(9)
Wallace has argued that this community upheaval also had serious implications for the general public health of the Bronx, as well. "In such times, the social controls that permit large numbers of people to live together in densely packed neighborhoods are greatly disrupted. Behaviors, most notably violent and criminal activities, that would not have been tolerated by residents in a previous period, are more likely to appear as the preventive influence of stable social and family networks and associated economic opportunities disappears."(14)
Wallace's work suggests that communities that have undergone sudden social and economic upheaval are at particular risk for the introduction of drug abuse and drug-abuse-related sexual risk behavior. These behaviors, in turn, will have a dramatic impact on the dissemination of HIV. This evolution is well illustrated in the shifting patterns of HIV infection among New York City's drug-using populations. HIV/AIDS was first reported among the City's injection users(15) and in 1996 was increasingly being reported as an epidemic among non-injection users of crack cocaine.(8)
This pattern of burnout also created a unique ecologic niche for "shooting galleries" and other drug use locations that were able to thrive in burned out or abandoned buildings. With the destruction of the physical and social structure of so many neighborhoods, drug use became epidemic and the conditions for the seeding of HIV among residents of these communities, in large part aided by the widespread population movements that the South Bronx Burnout occasioned, were well established. Wallace has suggested that these factors may well explain why HIV/AIDS cases in that borough are so much greater than those reported in other communities in the United States with similar demographic characteristics and reporting similar levels of drug use and risky sexual behavior.
One important consequence of the deterioration of inner-city communities in New York, with particular significance for the transmission of HIV, has been the increasing prevalence of AIDS in the prisons and jails of the United States,(16) but most especially in New York State. Seven New York City neighborhoods account for 75% of New York State's prison population,(17) and these communities, including the South Bronx, are precisely those poor African American and Hispanic communities reporting the highest rates of HIV infection in New York City. With some New York State prisons reporting that as many as 25% of their prisoners have AIDS and the degree of traffic back and forth between the prisons and the inmates' communities, reason exists to fear that these factors have created an efficient, effective engine for maintaining the presence of HIV in poor communities.
Prevention Priorities
Despite its impact on the African American community, AIDS is not typically perceived among African Americans as an issue requiring the same level of intervention and concern as other public health issues, such as violence and drug abuse.(18, 19) One frequently cited reasons for this apathy -- particularly to government-sponsored AIDS education campaigns -- is the existence of a lingering "backlash" to the Tuskegee Syphilis Study, one of the most infamous studies of race and disease in the history of American science. The study was designed to observe the progression of syphilis in an untreated study population of some 399 African Americans in Alabama. It was administered by a small group within the U.S. Public Health Service between 1932 and 1972.
From its inception to its abrupt halt in 1972 as the result of public outrage, the directors of the study refused to acknowledge any ethical responsibility to the study's subjects or the failure to be treated for syphilis when penicillin became available. The Director of Venereal Diseases at the Public Health Service from 1943 to 1948 went to far as to claim in 1976 that, "The men's status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people."(20)
Once important consequence of this study is that there is a widespread belief among African Americans that (1) AIDS and other community scourges such as drug abuse are genocidal plots directed by the government against African Americans and other minorities, and (2) that the government public health policies and programs cannot be trusted, even in instances where they appear to be in the best interests of the community. There is some evidence that this mistrust blunts the effectiveness of health education and other intervention programs that are sponsored or administered by federal, state, and local governments.(20, 21)
Among African-American gay men, however, a major, continuing obstacle to successful HIV prevention programs is the homophobia of many black community leaders and the lack of a well-organized, visible gay community of color, endowed with the capacity to lobby successfully for resources to support such programs.(22) Although agencies such as the Gay Men's Health Crisis (GMHC) have argued in support of the issues confronting minority gay men, there have been few programs targeted specifically to gay African American men, despite evidence that small scale, community-level interventions directed to this population can be effective.(22)
Federal-, state-, and municipal-level HIV prevention programs, typically funded by department of health and often with funding support from the CDC, remain the most important, widely implemented interventions targeted to communities of color in the United States. Mindful of the lessons of the Tuskegee Syphilis Study and of the need to increase the relevance of such programs for the populations that they serve, the CDC has sponsored the creation of prevention community planning councils that are composed of representatives of the communities and individuals that are targeted to receive prevention programs.(23, 24) These councils assist in the design, planning, and in some instances, the administration of prevention programs. These programs may involve street outreach to drug users and high risk youth, education programs designed to decrease sexual risk taking behavior and to increase condom use, and skills programs to assist participants to practice skills in condom use and in negotiating safer sexual encounters.(25)
The impact of these programs has not been evaluated or reported extensively in the AIDS research literature. Those results that have been published, however, show the efficacy of interventions that increase rates of condom use(26, 27) and/or improve participant's safe-sex negotiation skills.(22) These projects have demonstrated that it is possible to develop and implement techniques for informing individuals about the risks of HIV infection and for training them to act responsibly.
Evaluation studies have demonstrated that these behavioral interventions are effective; however, there is little published evidence that they have gone beyond the pilot testing/demonstration phase to be systematically implemented in communities of color nationwide. One explanation is that they are costly and labor intensive, two factors that limit their potential for being adapted and disseminated in communities that have few resources to administer social and human service programs, particularly given the CDC's own finite resources for funding local HIV prevention programs.(23) Finally, there is concern that small-scale interventions that are targeted to change the behavior of individual participants are of limited utility in communities where large numbers of residents are engaged in risk behavior.(28)
Fundamental questions also need to be raised about the assumptions on which programs directed to change the behavior of individuals are based. The assumption is that when men and women at risk for HIV infection are taught to assess their risks for exposure to HIV, they will make appropriate choices and act to promote their health and safety.(27) Participants are assumed to be capable of making free, unconstrained choices among a range of behavior that might expose them to infection and actions that will reduce exposure risks. While many African American do live under such conditions, these assumptions may not hold for an equally significant number of blacks who are living in poverty. Men and women caught up in drug use or in the barter of sex for drugs and/or money are often motivated by the need created by drug dependence or by the need to eat, find shelter, or be protected from harm. In such a risk context, choosing to engage in risky behaviors that secure an immediate need (eg, trading sex for food or for temporary shelter) may take precedence over behaviors that protect the individual from exposure to HIV, particularly since the consequences of such choices will not be apparent for years.
Wallace at al(13) have argued that in poor communities of color, such as the South Bronx, the social networks and community norms that support neighborhood-based public health interventions have been destroyed. The increasing poverty of the community's residents and the corresponding increases in crime, violence, drug abuse, and their associated risk behaviors can only be countered by efforts to stabilize the community and prevent further destruction of its social networks. Wallace et al(14) state:
"Because of the interrelated nature of the nexus of behavior leading to substance abuse and associated pathologies -- including AIDS -- general systemic social interventions will go far toward mitigating many of the urban ills of the United States, including a whole host of problems of public health and public order which now overwhelm the nation's criminal justice and health care systems, problems for which substance abuse is a kind of universal matrix in which they are embedded and to which they contribute."
Beyond HIV Prevention in Minority Communities
One of the continuing debates among AIDS researchers in the United States center around the possibility of a "breakout" of the epidemic beyond the confines of the gay and minority ghettos, where the majority of cases are being reported, to the larger "mainstream" of general population. Wallace(9) and Gould(10) argued that instability of urban minority neighborhoods with high HIV seroprevalence militates strongly against the notion that the epidemic will "burn itself out" in its current geographic locations.
Gould and Wallace(10) point out, for example, that the commuter travel networks provide numerous links between suburban communities and the urban centers where significant portions of the nation's workforce are employed. The forces that have produced high levels of population mobility within poor communities almost guarantee that infected individuals will be on the move as well. The rate-limiting factor in the dissemination of HIV infection will be the frequency with which this pattern of mobility creates opportunities to seed the epidemic in communities that are currently reporting low seroprevalence rates.
To date there appears to be little evidence that such contact occurs with sufficient frequency to alter the current dynamics of transmission and dissemination across different population groups. But as Gould and Wallace maintain, the history of epidemics is that if they are not eradicated, wider dissemination becomes almost inevitable. There is evidence that in many poor African American urban communities, HIV/AIDS has already moved from gay men of color and intravenous drug users to encompass a largely heterosexual population of crack users with no history of injection drug use.(8) The question arises whether this movement from one population subgroup to another will continue.
Because many crack-for-sex workers have moved out of the urban core and into the venues that many "traditional" prostitutes have worked,(29) there is reason to believe that the conditions for the epidemic to leapfrog to other, more affluent communities do exist. To cite Gould and Wallace,(10) "At no point in the course of the epidemic does it appear that concentration is ever containment."
Protease inhibitors -- drugs that inhibit the HIV protease enzyme from replicating -- may play the most significant role in HIV breakout scenarios. Currently, significant numbers of persons undergoing treatment regimens using these drugs are reporting "undetectable levels of HIV" in their blood. These remarkable clinical results suggest that there is ample reasons to believe that those for whom these therapies are working will live considerably longer than AIDS patients of the previous decade.(30, 31) Such patients are not, however, free of virus, and they do have the capacity to infect others. With more and more HIV-infected individuals of all races and in all communities living longer, the need for these individuals to practice safe sex and safe drug use becomes paramount if the epidemic is to be contained.
If, however, the destabilization of communities such as the South Bronx or Harlem is at the core of the engine that is driving the epidemic to new places and new populations, the prevention agenda must be appropriately adjusted to acknowledge the need to address a broader social and political agenda than one that focuses on teaching individuals to use condoms or to clean injection drug equipment. The constraints on individuals who are at risk in this kind of environment may be too great --too compelling -- to permit them to exercise the kind of "informed choice" that so many HIV risk prevention interventions strive to achieve. HIV prevention efforts in such a setting may need to focus on the creation of economically and politically viable neighborhoods and in the provision of appropriate access to a variety of social, public health, and educational services. HIV and AIDS are symptoms of the collapse of economic opportunity and social stability in these areas, and failing to address these causes will undoubtedly increase the severity of the symptoms.
References
1. Centers for Disease Control. HIV/AIDS Surveillance Report. Vol 8. 1996.
2. Karon JM, Rosenberg PS, MacQuillan G, et al. Prevalence of HIV infection in the United States, 1984-1992. JAMA 1996;276:126-131.
3. Holmberg SD. The estimated prevalence and incidence of HIV in 96 large U.S. metropolitan areas. Am J Public Health 1996;86:642-654.
4. Osborne NG, Feit MD. The use of race in medical research. JAMA 1992;267:275-279.
5. Fullilove MT. Perceptions and misperceptions of race and drug use. JAMA 1993;269:1034.
6. Substance Abuse and Mental Health Services Administration. Preliminary estimates from the 1994 National Household Survey on Drug Abuse. Washington DC: U.S. Department of Health and Human Services, 1995.
7. Lillie-Blanton M, Anthony JC, Schuster CR. Probing the meaning of racial/ethnic group comparisons in crack cocaine smoking. JAMA 1993;269-993-997.
8. Edlin BR, Irwin KL, Faruque S, et al. Intersecting epidemics -- crack cocaine use and HIV infection among inner-city young adults. N Engl J Med 1994;331:1422-1427.
9. Wallace R. A synergism of plagues: 'Planned shrinkage,' contagious housing destruction, and AIDS in the Bronx. Environ Res 1988;47:1-33.
10. Gould P, Wallace R. Spatial structures and scientific paradoxes in the AIDS pandemic. Geografiska Annaler 1994;76:105-116.
11. Bureau of HIV Program Services. The AIDS epidemic in New York City: Men of color who have sex with men. New York City Department of Health, June 1996.
12. Centers for Disease Control. Facts about HIV/AIDS and race/ethnicity. Atlanta: U.S. Public Health Service, 1995.
13. Wallace R, Wallace D, Andrews H, et al. The spatiotemporal dynamics of AIDS and TB in the New York metropolitan region from a sociogeographic perspective: Understanding the linkages of central city and suburbs. Environ Planning 1995;27:1085-1108.
14. Wallace R, Fullilove MT, Wallace D. Family systems and de-urbanization: Implications for substance abuse. In: Lowinson J, Ruiz, P, Millman R, eds. Substance Abuse: A Comprehensive Textbook, 2nd ed. Baltimore: Williams & Wilkins, 1992;944-955.
15. DesJarlais DC, Friedman SR Sotheran JL, et al. Continuity and change within an HIV epidemic. JAMA 1994;271:121-127.
16. Centers for Disease Control. HIV/AIDS education and prevention programs for adults in prisons and jail and juveniles in confinement facilities: United States, 1994. MMWR 1996;45:268-271.
17. Fullilove RE. Community disintegration and public health: A case study of New York City. In: Institute of Medicine. Assessing the Social and Behavioral Science Base for HIV/AIDS Prevention and Intervention: Workshop Summary/Background Papers. Washington DC: National Academy Press, 1995;93:116.
18. Dalton HL. AIDS in blackface. Daedalus 1989;118:205-227.
19. Morales ES, Fullilove MT. 'Many are called...': Participation by minority leaders in an AIDS intervention in San Francisco. Ethn Dis 1992;2:389-401.
20. Thomas SB, Quinn SC. The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV education and AIDS risk education programs in the black community. Am J Public Health 1991;81:1498-1505.
21. Guinan ME. Black communities' belief in AIDS as genocide: A barrier to overcome for HIV prevention. Ann Epidemiol 1993;193-195.
22. Peterson JL, Coates TJ, Catania J, et al. Evaluation of an HIV risk reduction intervention among African-American homosexual and bisexual men. AIDS 1996;10:319-325.
23. Centers for Disease Control Advisory Committee on the Prevention of HIV Infection. External review of CDC's HIV prevention strategies. Atlanta: U.S. Public Health Service, 1994.
24. Centers for Disease Control. First 500,000 AIDS cases -- United States, 1995. MMWR 1995;44:849-853.
25. Centers for Disease Control. Current trends: AIDS among racial/ethnic minorities -- United States, 1993, MMWR 1994;43:644-654.
26. DiClemente RJ, Wingood GM. A randomized controlled trial of an HIV sexual risk-reduction intervention for young African-American women. JAMA 1995;274:1271-1276.
27. Jemmott LS, Jemmott JB. Applying the theory of reasoned action to AIDS risk behavior: Condom use among black women. Nurs Res 1991;40:228-234.
28. Tawil O, Verster A, O'Reilly K. Enabling approaches for HIV/AIDS prevention: Can we modify the environment and minimize the risk? AIDS 1995;9:1299-1306.
29. Nieves E. For better business, prostitutes leaving Manhattan for Jersey City. New York Times Metro section, September 22, 1992;B1.
30. Kropf A. Good news: Accentuating the positive. Innovations, Spring 1998;4.
31. Stine GJ. AIDS Update 1997: An Annual Overview of Acquired Immune Deficiency Syndrome. Saddle River NJ: Prentice Hall, 1997.
Table 1. HIV/AIDS Cases in the United States, New York City, Detroit, and Chicago in 1996
CITIES
|
NO. OF CASES
|
RATE PER 100,000
|
New York City
|
86,977
|
132.0
|
Detroit
|
5,410
|
6.9
|
Chicago
|
15,322
|
23.4
|
U.S. metropolitan areas of >500,000 population
|
462,134
|
36.1
|
From Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report, Vol. 8, no. 1, 1996.
|