The epidemic of HIV/AIDS in African American Women: A discussion of health access, prevention programs and governmental mistrust.-Olga Jackson

Introduction:
In 1995 the emerging epidemic of HIV/AIDS in the African American community was acknowledged. It was during this time African Americans equaled whites in proportion of reported AIDS cases. The early public health response to HIV/AIDS was not focused on African American communities in most of the country, despite the evidence of this emerging epidemic. Nationally much of the media attention had been focused on the fight against HIV/AIDS in other global communities, specifically Africa, but failed to recognize the plight here in the United States.

It was finally in 2002 that the disproportionate growth of HIV/AIDS in the African American community, specifically in African American women ages 15-24, was acknowledged but there was a failure to address an effective plan for counter measures (CDC, 2004). According to the Centers for Disease Control and Prevention (CDC, 2004), African Americans represent more than half of all HIV/AIDS cases and HIV/AIDS is now the leading cause of death for African American women age 25-34 (CDC, 2004). At the end of 2003, over 66 percent (58,319) of the estimated 87,940 women living with HIV/AIDS were African American (Kaiser Foundation, 2004, 2005).
There are several key factors the public health sector is not addressing effectively to halt the increasing transmission rates in this population. Condoms have been found to be 99% effective in preventing the transmission of the HIV virus, but research has shown the majority of women do not know the proper way to put on a condom (KnowYourStatus.com). And from those who say they use a condom regularly during intercourse, many have been found not to use the condom properly, decreasing the efficacy of prevention (KnowYourStatus.com). Educational messages do not address the social pressures this population must overcome, in order to escape this epidemic. This paper will look at some of the factors both behavioral and non-behavioral that put Black women, ages 15-24, at a disproportionate risk than their white counterparts for HIV/AIDS infections. Specifically the historical distrust of the medical field, inadequate access to healthcare and education, and prevention programs which are not targeting the at risk African American community, that are to blame.

Medical Mistrust:
Before a discussion concerning HIV/AIDS in the African American community can be undertaken; we must look at the social perception of HIV/AIDS and the medical community in the African American community. Historically experiments have been undertaken in the name of medical advancement against African Americans. Experiments such as the Tuskegee Syphilis Study in Tuskegee, Alabama, decades after the study was discontinued have not been forgotten and this memory accounts for the mistrust of the medical field with African Americans.

HIV/AIDS and the disproportionate numbers in the African American community was another testament to the experimentation, with African Americans as the subjects; many in the African American community believe continues to exist (Bogart, 2005). And it is this belief that contributes to the risk taking behavior and poor condom use in the Black community. In one recent study, a significant proportion of respondents endorsed HIV/AIDS conspiracy beliefs. Among men, stronger conspiracy beliefs were significantly associated with more negative condom attitudes and inconsistent condom use (Myers, 2003).

Healthcare Access and Education:
According to the Agency for Health Care Policy and Research, fully 20 percent of African Americans lack a usual source of healthcare. African Americans are more likely to be uninsured and therefore less likely to receive timely preventive care. Also over a third of The HIV Cost and Services Utilization Study, the only nationally represented study of people with HIV/AIDS receiving regular or ongoing medical care for HIV infection, found that African Americans fared more poorly on several important measures of access and quality than whites (Kaiser Foundation, 2005). The uninsured are up to three times more likely than those with insurance to report difficulties getting needed medical care, even for serious problems (Kaiser Fact Sheet, 2000).

Over a third of African Americans with HIV diagnoses were tested for HIV late in their illness, most during hospitalization for serious medical illness. The lack of insurance is not the only reason for inadequate care to African American women. African Americans and other racial/ethnic minorities may receive lower-quality healthcare and treatment, regardless of their insurance status; some studies have suggested (Kaiser Fact Sheet, 2000). Specifically the Shulman report concerning Cardiac Catheterization among different minorities showed the disparities in more aggressive and appropriate even when insurance, age and presentation are controlled for. This study showed, and what Black Americans, specifically women, must contend is the phenomenon of institutional disparities in healthcare and access to healthcare. Since the inception of HIV most research concerning HIV/AIDS, whether experimental drugs or experimental vaccine, are conducted of whites or white gay males; effectively leaving the subset of a population which is in greatest need out.

As in any disease, we must be aware that not all treatments work equally in all populations. African American women have realized the challenges they face with HIV/AIDS and published reports have shown they are willing to be study subjects in new research. Interviews with 22 African-American HIV-positive women conducted at the end of a 2-year study indicated that over the course of the study, reports of discomfort with participation gave way to reports of appreciating the benefits of participation. Women commented on the importance of their relationships with researchers, in which they received benefits and provided a service to the researchers (Mallory, 2002).

Prevention Programs:
Current HIV prevention efforts have relied heavily on psychological foundations to explain risk behavior and identify the best methods to bring about permanent change. Most HIV interventional designs, such as Know Your Status: Knowing is Beautiful and Wrap It Up, have relied on elements of five (5) specific belief models; those being the Health Belief Model, the Theory of Reasoned Action, the Social Learning Theory, the AIDS Risk Reduction Model, the Stages of Change Model, and the Diffusion Theory. Users of the Health Belief Model advocate interventions that attempt to address perceived susceptibility, severity of the illness and barriers to a person’s ability to change behavior (Salazar, 1991; Choi, 1998). Users of the Theory of Reasoned Action emphasize social influences in their intervention strategies; how the intention to act drives behavior and this intention is responsive to both the individual and peer beliefs (Salazar, 1991; Choi, 1998). Users of the Social Learning Theory advocate interventions which emphasizes the importance of giving information, the development of self-protective skills and controlling self-efficacy, the building of self-reliance and social support for desired personal changes(Salazar,1991). The AIDS Risk Reduction Model is a combination of the Health Belief and Social Learning Theories; it incorporates the identification of the high-risk behavior and commitment to change it, while using steps to withstand the societal pressures of this behavior change (Choi, 1998). The Diffusion theory is a subset, of sorts, of the Social Learning theory; it uses peers and peer-groups to communication new ideas to the target population (Choi, 1998).

Although these theories have effectively been incorporated into HIV prevention programs with white gay men, asian/pacific islander populations (Choi, 1989) and to a lesser extent black gay men; black women have special needs and concerns regarding HIV prevention and education. All HIV programs advocate wearing a condom every time and all the time to protect yourself and get tested even when you think you are sure of your partner; their purpose is to educate the general population about the various risks of infection and how they can protect themselves. While these programs will target adults who are at-risk, it lacks greatly in addressing issues faced by African American women in the 15-24 range. Programs such as the Wrap It Up campaign, are wonderful programs which attempts to include all the various at risk groups, IV drug users, men who have sex with men, gay/lesbian/bisexual and heterosexual risk takers; yet because it is so inclusive, it cannot or will not address a population that is in the midst of an epidemic.

This program and programs like it, do not give effective education about what is going on in the Black community. HIV prevention programs in the Black community fail to account for the ‘extra-individual’ circumstances in HIV transmission within cultural communities (AIDS Action Committee, 2001). Prevention/intervention programs are not addressing the issue of men who have sex with men; a new phenomenon in the Black community that has come to light through such books as J.L. King “On the Down Low”. It has been found that in a study of HIV infected persons, 34% of African American men who have sex with men reported having had sex with women; yet only 6% of African American woman reported having had sex with a bisexual man (CDC, 2003). Data from 2003 indicated that 3% of HIV cases in black women ages 15-24 year old age were traced to sexual contact with bisexual men.

In addition, the women a part of this epidemic tend to disproportionately suffer from low self esteem, putting them at greater risk for high-risk behavior (Fang, 1996, Miller, 1997); one study in a population of lower socioeconomic status Black women found there is a feeling of powerlessness in the control of their HIV status. This peer group is more likely to have sexual relations with older men; therefore putting them at higher risk of developing HIV or other sexually transmitted diseases. Second to the fact, older men tend to have the power in the relationship, and in an attempt to keep the relationship, women in this age range will engage in risky sexual practices, such as unprotected sex increasing their risk exponentially for HIV/AIDS transmission. Also, women at risk were more likely to have been forced (Wingood, 1998) or coerced into unwanted sex and were less likely to have been familiar with their most recent sex partner. These results suggest that HIV risk-reduction interventions targeting inner-city women should focus on skills training approaches to build self-efficacy and empower women to adopt risk-reducing practices (Kalichmen, 1997).

Discussion:
HIV prevention programs continue to direct women to abstain from sex, reduce their number of partners, use condoms and get tested regularly; which ignores the reality that many African American women are monogamous and at-risk as a result of their partner’s sexual and drug abusing behavior (AIDS Action Committee, 2001). Discussions about safer sex need to be put in context, so that HIV prevention programs do not assume promiscuity or lack of self-efficacy among communities of color. Not one of the preventative programs address power dynamics or self esteem as a cause of the HIV trend, even with supporting data that directly link low self –esteem to poor sexual health and decision making. Prevention programs need to tailor their messages and efforts in order to target specific populations, especially African American women, by overcoming cultural and linguistic barriers.
Since the 1990s there have been models developed to address these current issues. Models such as the Peer Education and Outreach Model, the Multifaceted Empowerment Model for Women and the Women of Color AIDS Council program seek to incorporate the “extra-individual” factors that affect the lives of Black women. These models attempt to minimize HIV risk behaviors by addressing individual feelings of powerlessness, and encouraging leadership, involvement and activism within the communities the at-risk population inhabit to reinforce and encourage behavior change (Wingood, 2000; AAC, 2001). Unfortunately these models have not been used on the scale as the older and better known psychosocial models (i.e. Health Belief, Social Learning, Reasoned Action….etc). With these newer models targeting this at-risk population, dialogue between peers, community leaders and healthcare providers can be facilitated; and attempts to tackle education, taboo issues (i.e. MSM), and health care access can be addressed. Within these models there is room for improvement, as the newer interventional models fail in addressing the historical distrust of the medical profession by the Black community. This point continues to be a pertinent issue which poses barriers to the HIV/AIDS prevention, research, and treatment efforts of many government-sponsored programs. To counter such beliefs, government and public health entities need to work toward obtaining the trust of black communities by addressing current discrimination within the health care system as well as by acknowledging the origin of conspiracy beliefs in the context of historical discrimination (Bogart, 2005). In the wake of this mistrust, there should be a concerted effort to include this at-risk/high-risk population in HIV treatment, vaccine and study trials. A step clinical investigators must take as they prepare to recruit study participants is to develop a relevant definition of the subject populations. Be prepared to address historical barriers in recruiting minorities into clinical trials, including barriers inherent in study design, researcher bias, barriers to minority physician participation, as well as strategies for minority recruitment, modifications of study design, and cost issues (Swanson, 1995). At this point will we pave a way to effectively tackle this epidemic.


Conclusion:
The racial, social and institutional barriers in receiving healthcare access is detrimental, not only for diagnosis and treatment; but for the lack of HIV/AIDS prevention strategies via accurate and understandable education in the African American community. It will be a challenge to overcome the stigma, poor sexual practices, mistrust, low self-esteem and racial discrimination which account for the HIV/AIDS epidemic in African American woman. Deconstructing these problems will take a national effort, wherein we get the Black community, public health departments, and social scientists involved to target the flaws and find a good solution. Some strides have been made, but with health services that are insufficient to meet the needs of this at risk population due to under funding and staffing issues there are continued strides to be made.


References:

AIDS Action Committee. What Works in HIV Prevention for Women of Color [Policy Facts]. Washington, DC: 2001. Online resource. www.aidsaction.org

Bogart, L. M., & Thorburn, S. Are HIV/AIDS Conspiracy Beliefs a Barrier to HIV Prevention Among African Americans? Journal of Acquired Immune Deficiency Syndromes, 38 (2), 213-218. 2005

Choi, Kyung-Lee. HIV Prevention among Asian and Pacific Islander American Men Who Have Sex With Men: A Critical review of Theoretical Models and Direction for Future Research. AIDS Educ Prev. (3 Suppl):19-30, 1998, June

Crosby, R A. Activity of African-American female teenagers in black organizations is associated with STD/HIV protective behaviours: a prospective analysis. Journal of Epidemiology & Community Health. 56(7):549-50, 2002 Jul.

Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report, 15. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention., 2003

Centers for Disease Control and Prevention. HIV/AIDS among Women [Fact Sheet]. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention. 2004


Kaiser Family Foundation. Health Insurance Coverage and Access to Care Among African Americans. 2000, June

Kaiser Family Foundation. . Kaiser Family Foundation Survey of Americans on HIV/AIDS: Part Three -- Experiences and Opinions by Race/Ethnicity and Ag. 2004, August

Kaiser Family Foundation. African Americans and HIV/AIDS [HIV/AIDS Policy Fact Sheet]. 2005, February

www.KnowYourStatus.com. Online electronic resource

Fang, X. Similarity of risk and protective behaviors among African-American pre- and early adolescent members of naturally occurring friendship groups. Bulletin of the New York Academy of Medicine. 73(2):285-300, 1996

Kalichman, S C. Psychological and social factors associated with histories of risk for human immunodeficiency virus infection among African-American inner-city women. Journal of Women's Health. 6(2):209-17,1997, April

Mallory, Caroline. Reciprocity and retaining African-American women with HIV in research. Applied Nursing Research. 15(1):35-41, 2002 February

Miller, K S. Sexual initiation with older male partners and subsequent HIV risk behavior among female adolescents. Family Planning Perspectives. 29(5):212-4, 1997 September

Myers, Hector F. Psychosocial predictors of risky sexual behaviors in African American men: implications for prevention. AIDS Education & Prevention. 15(1 Suppl A):66-79. 2003

Swanson, G. Marie. Recruiting Minorities Into Clinical Trials Toward a Participant-Friendly System. Journal of the National Cancer Institute, Vol 87, No 23, 1747-1759. 1995

Salazar, Mary K. Comparison of Four Behavioral Theories. A literature review. AAOHN Journal, Vol 39, No 3, 1991 March

Wingood, G M. DiClemente, R J (1998) Rape among African American women: sexual, psychological, and social correlates predisposing survivors to risk of STD/HIV. Journal of Women's Health. 7(1):77-84, 1998 Feb.


Wingood, G. (2000). Application of the theory of gender and power to examine HIV related exposures, risk factors, and effective interventions for women, Health Education and Behavior 27(5), 539-656