Wednesday, December 13, 2006

The Failure of the CDC’s Recommended Medical Intervention to Address Social Factors Related to HIV/AIDS Testing Among African Americans – Kelly Miller

To improve the 1993 Recommendations for HIV Testing Services for Inpatients and Outpatients in Acute-Care Settings, the Centers for Disease Control and Prevention (CDC) revised their recommendations for HIV testing in healthcare settings by introducing the Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Healthcare Settings. Effective September 2006, the new recommendations aim to make HIV testing a routine part of medical care in addition to expanding the gains made in diagnosing HIV infection among pregnant women (CDC, September 2006). At first glance, the Recommendations appear to be in the best interest of both HIV-infected persons, and society at large. As an estimated 250,000 persons in the United States are unknowingly infected with HIV, routine screening would lead to earlier treatment and help reduce risk-behaviors that expose others to infections. The CDC also argues that routine testing provides a normalization factor, which will help to reduce or eliminate the stigma associated with getting an HIV test. Largely embraced by the public health and medical community as more efficient, more cost-effective and timelier than risk-based HIV testing, these new recommendations present a rational, medical intervention to a community of health professionals who have come to accept medical interventions as the norm. However, looking at the new recommendations from the perspective of the African-American community, one can draw insightful criticism of both the CDC’s and Americans’ approach to the AIDS epidemic in America.

The major flaw in the CDC’s recommendation for routine testing is its unequal applicability among Americans. The CDC overlooks critical social issues pertinent to African-Americans, although these shortcomings are not the result of ignorance. On the contrary, a glimpse at the CDC’s HIV website (http://www.cdc.gov/hiv/) shows that HIV/AIDS among African-Africans is a complete and extensive topic in and of itself. The CDC HIV/AIDS Fact Sheet: HIV/AIDS Among African Americans (CDC, February 2006) is an example of their most recent analysis of the significance of HIV/AIDS in the African-American community. Thus, ignorance cannot be used as a defense to deflect criticism because the CDC’s own research findings demonstrate their identification of race-specific HIV prevention challenges.

Given the data, the CDC’s basic problem lies in the application of their needs assessment to this intervention. Routine testing fails the African-American community because it shows complete disregard for the fundamental issues that have contributed to African-Americans accounting for 50% of the estimated new HIV/AIDS diagnoses in the United States, despite making up only 12.3% of the population (CDC, February 2006). The greatest fault of the new recommendations is that the intervention draws solely on a medical rationale that neglects key social science factors. In failing to consider the severity of social stigma associated with HIV testing and infection among African-Americans, failing to consider the history and justification that has led to African-American distrust of the medical establishment, and failing to consider the feasibility for African-Americans in accessing routine health care, the CDC has failed to serve the population that is most affected and in need of the most help in diagnosing and treating HIV and AIDS.

Stigma is one of public health’s greatest challenges. AIDS stigma and discrimination undermine public health efforts to combat the epidemic (Malcolm, 1998). Whether it is perceived or enacted, the effects of stigma are significant because they evoke reactions from individuals, communities, and even nations, from sympathy and caring to silence, denial, fear, anger and violence (Brown, 2003). There are stigmas coupled to the behaviors associated with HIV acquisition. For example, there are reports of health professionals showing preference for caring for patients infected through blood transfusion as opposed to those infected through homosexual activity or injection drug use (Gallop, 1991). Average Americans are also less likely to show compassion for people who contracted HIV through stigmatized behavior (Capitanio, 1999). Additionally, there are stigmas inherent in belonging to a disadvantaged sociodemographic group that experiences prejudice from health professionals based on race and class discrimination (Chesney, 1999). On top of these stigmas, the AIDS stigma negatively affects preventive behaviors, HIV test-seeking behavior, care-seeking behavior on diagnosis, quality of care provided to HIV-positive patients and perception and treatment of persons living with HIV/AIDS by communities, families, and partners (Brown, 2003).

This layering of stigmas is an essential social variable that the CDC must consider in order to design and implement effective interventions. Within the African-American community, this multi-layered issue of stigmatization should be considered an important hindrance to HIV testing, especially testing that would occur as part of routine health care. There are real fears associated with HIV testing in general, let alone testing that will be performed on an opt-out basis only. An example of such fear is seen in a survey conducted in Arizona, that found that among gay and bisexual men, the most common reason for not getting tested was not wanting the state department to know that they tested positive (Weitz, 1991). Of additional concern is the evidence indicating that individuals who are more likely to decline testing when it is offered are more likely to be HIV positive and again, the primary reason given for refusing the test was fear of stigmatization. This is a fear that does not discriminate against race and makes a relevant contribution to the layering of stigmas that African-Americans must uniquely battle. Public health practitioners must remember that stigma breeds fear and paralysis in its victims and in the case of HIV and AIDS this is especially dangerous because early diagnosis and treatment are crucial for prolonging survival.

The fact that stigma has historically been associated with delays in getting an HIV test and more adverse responses by those who test positive, should not be dismissed in any part because the recommendations now call for routine testing. If anything, incorporating testing into routine care may perpetuate the stigma and fearful perceptions that African-Americans hold with regard to the American health system. Unless the system itself addresses the problem of internal prejudices, it is unlikely to gain trust from African-Americans. The CDC suggests that routine testing will reduce the stigma associated with getting a test, but for African-Americans, stigma is rooted in issues that are deeper than the test alone.
In addition to diagnosis related stigma, HIV/AIDS patients face illness related stigma as well. Learning that one is HIV positive sets a new life course that will involve decisions that range from disclosing serostatus to partners, family, friends and health care professionals to entering and participating in care. If one chooses not to disclose status, the adverse consequences of HIV-related stigma become compounded as HIV illness progresses and concealment becomes increasingly difficult. In the most serious instances, the stigmatization of HIV can result in individuals foregoing valuable social support and medical treatments that could improve their longevity and quality of life (Chesney, 1999). The social support factor is particularly complicated within the African-American community because social norms are intertwined with teachings that come out of the Church.

As important, integral, institutions within their communities, churches are seemingly logical places to look for leadership and support in the midst of a health crisis that is gripping the African-American population. However, homophobia, resulting in the cultural stigma placed on homosexuality, has been reinforced by the church, and has made it difficult for homosexual African-Americans to reveal their HIV status to friends and family. “It is in this point that AIDS action has floundered, largely because the stigma against homosexuality, although rooted in church teachings, influences though and action in many other sectors of the AA community” (Fullilove, 1999). The CDC HIV interventions and prevention actions should consider the depth of the character of AIDS stigma; without addressing the fundamental social barriers that prevent people from engaging in the health system, one cannot expect to see the AIDS epidemic reverse its disproportionate toll on African-Americans.

The African-American community should also criticize the CDC for failing to consider the history and justification that has led to group distrust of the medical establishment. Although African-American mistrust of medical care stems from a general mistrust of societal institutions dating back to slavery, health care is a key American institution that has a long history of mistreatment of African-Americans. Cumulative experiences of discrimination and devaluation have fostered a justified notion of skepticism and mistrust towards large health care systems as well as individual providers (Brandon, 2005). The Tuskegee Study of Untreated Syphilis in the Negro Male, the disproportionate impact that AIDS is having on the black community, and other disproportionately high incidence rates of treatable diseases that cannot be wholly accounted for by socioeconomic status nor insurance, have exemplified racial disparity and “spurned conspiracy theories about black genocide” (McGary, 1999).

Unsurprisingly, many African-Americans believe that the health care system in the United States is not designed “in accordance with principles that are publicly recognized as fair and just" (McGary, 1999). The CDC’s recommendations ignore the fact that study findings consistently indicate that adolescent and adult African-Americans are less likely than whites to have any physician contact in the past year even after accounting for income and health status (Bartman, 1997). Furthermore, of the African-Americans who did have contact, compared to whites, they reported fewer visits and less satisfaction with the physicians’ treatment. They also had lower use of ambulatory and preventive services, even after adjusting for income (Gornick, 1996).

Clearly, distrust of the medical establishment has contributed to African-Americans’ underutilization of healthcare. In a detrimentally cyclic fashion, “lack of familiarity and the consequent lack of trust, influences many poor African-Americans and dissuades them from seeking health care (McGary, 1999). This problem is significant for HIV/AIDS because bringing African-Americans into treatment should be a public health priority. Medical interventions such as routine testing fail to address the fact that many African-Americans are not getting any type of care in the first place. Part of this is due to infeasibility in accessing care, but part is also due to the history of discrimination and racism that is rarely addressed within the medical community.

Distrust has also cultivated staunch assumptions and presumptions about the quality of care an African-American is likely receive. In a 2000 study to assess public perceptions and experiences with regard to race and ethnicity in health care, 64% of African-Americans believed they were less likely than whites to get the newest medicines and treatments for HIV/AIDS, compared to 43% of whites who believed this to be true (Lillie-Blanton, 2000). In the same study, nearly 65% of African-Americans reported that they are concerned that they may be treated unfairly when seeking medical care in the futures, whereas less than 22% of whites expressed such concerns. Clearly, the implication for these findings should be taken into account when medical and public health practitioners devise new strategies and health goals which include clinical care.

Finally, the CDC should be criticized for failing to consider feasibility in accessing routine healthcare. Despite the complex nature of racial disparity, ignoring this problem is not going to lead to effective dialogue and awareness on the national level. While the magnitude of these disparities is related to socioeconomic and insurance status there are other ill-defined factors that are difficult to quantify (Mayberry, 2000). A spectrum of variables ranging from geographic proximity to a health care facility to one’s psychological state and motivation at any point before and during illness play a role when determining whether or not medical treatment is a feasible option. There is a plethora of reasons to strengthen the argument that routine checkups are an infeasible health measure for many African-Americans. Some of these reasons, stigma and distrust, have been highlighted here, but there are others, such as proximity to a health care facility and availability of transportation modes, which have greater significant to a minority group and influence the effectiveness of public health interventions within sub-populations of the target population. When considering recent study findings that emphasize the importance of prompt HIV testing during the period of primary infection (Chesney, 1999), the issue of feasibility becomes fundamental; how can we advocate for prompt testing when the forerunner should be accessible testing locations? All associated problems such as stigma, distrust and prejudices are secondary to the main problem of access to care. Thus, feasibility must be considered when creating and revising health interventions.
The CDC revised recommendations for routine HIV testing have some merit for some Americans. However, African-Americans are disproportionately affected by HIV/AIDS and this intervention does nothing to address this disparity. By failing to account for stigma, African-American distrust of the medical establishment and the feasibility of applying the recommendation, the CDC has neglected to incorporate any measures that will help combat HIV/AIDS among America’s most affected group. While there is no single intervention that could address these multilayered issues and incorporate them into one solution, it is this type of medical-only based intervention that will prevent us from confronting the root causes that perpetuate this disease.

References
Bartman, B. A., Boy, E., & D’Angelo, L. J. (1997). Access to ambulatory care for adolescents: the role of a usual source of care. Journal of Helath Care for the Poor and Underserved, 8, 214-226.

Brandon, D. T., Isaac, L. A., & LaVeist, T. A. (2005). The legacy of Tuskegee and trust in medical care: is Tuskegeee responsible for race differences in mistrust of medical care? Journal of the National Medical Association, 97 (7), 951-956.

Brown, L., Macintyre, K., & Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Education and Prevention, 15 (1), 49-69.

Capitanio, J. P., & Herek, G. M. (1999). AIDS-related stigma and attitudes toward injecting drug users among black and white Americans. American Behavioral Scientist, 42 (7), 1148-1161.

CDC. “HIV/AIDS | CDC HIV/AIDS.” Centers for Disease Control and Prevention: HIV/AIDS. December 5, 2006. <>.

CDC. (February 2006). CDC HIV/AIDS fact sheet: HIV/AIDS among African Americans.

CDC. (September 2006). Revised recommendations for HIV testing of adults, adolescents, and pregnant women in health-care settings. MMWR, 55 (No. RR-14), 1-17.

Chesney, M. A., & Smith, A.W. (1999). Critical delays in HIV testing and care: the potential role of stigma. American Behavioral Scientist, 42 (7), 1162-1174.

Fullilove, M. T., & Fullilove, III, R. E. (1999). Stigma as an obstacle to AIDS action: the case of the African American community. American Behavioral Scientist, 42 (7), 1117-1129.

Gallop, R. M., Lancee, W. J. Taerk, G., Coates, R. A., Fanning, M., & Keatings, M. (1991). The knowledge, attitudes and concerts of hospital staff about AIDS. Canadian Journal of Public Health, 82, 409-412.

Gornick, M. E., Eggers, P. W., & Reilly, T. W. (1996). Effects of race and income on morality and use of services among medicare beneficiaries. New England Journal of Medicine, 335, 791-799.

Lillie-Blanton, M., Brodie, M., Rowland, D., Altman, D., & McIntosh, M. (2000). Race, ethnicity, and the health care system: public perceptions and experiences. Medical Care Research and Review, 57 (1), 218-235.

Malcolm, A., Aggleton, P., Bronfman, M., Galvao, J., Mane, P., & Verrall, J. (1998). HIV-related stigmatization and discrimination: its forms and contexts. Critical Public Helath, 8 (4), 347-370.

Mayberry, R. M., Mili, F., & Ofili, E. (2000). Racial and ethnic differences in access to medical care. Medical Care Research and Review, 57 (1), 108-145.

McGary, H. (1999). Distrust, social justice, and health care. The Mount Sinai Journal of Medicine, 66 (4), 236-240.

Weitz, R. (1991). Anonymity in testing for HIV antibodies desired option [Letter]. American Journal of Public Health, 81, 1213.

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