Widening the Healthcare Gap: The AIDS Epidemic and “The Other”

Kyra Neylan is a fourth year student at Grinnell College studying biology and neuroscience. She is interested in pursuing a career in medicine.

From the onset in 1980 of what would come to be a national epidemic, the disease now known as HIV/AIDS was framed as a disease of male homosexuality. Initially termed Gay Related Immune Deficiency (GRID), early reports from the CDC and newspapers constructed the disease as a “gay plague,” transmitted sexually between homosexuals [1]. Within the first year, there was evidence that the disease affected heterosexuals, women, and racial minorities, yet the media coverage persisted in framing it as a gay man’s disease [2]. With increased case reports in non-homosexuals and women, the name GRID was dropped, to be replaced with Acquired Immunodeficiency Syndrome (AIDS) [3]. The CDC released recommendations in 1983 of social categories of high risk for the disease, the “4 H Club”: homosexuals, Haitians, heroin addicts (intravenous drug users), and hemophiliacs [4]. However, the focus remained on condemning gay men, highlighting societal and governmental denial of the seriousness and distribution of AIDS risk. In a 1984 newspaper article describing research efforts to create a screening test, a long-term research study debated informing heterosexual blood donors if their blood tested positive, for concern that they may be falsely labeled as homosexuals [5]. The early focus on homosexuality clouded the existence of the disease among heterosexuals and women, and minimized the importance of racial disparities, as well as precluding early surveillance and prevention efforts for vulnerable populations. From the very beginning of the epidemic, there existed racial, sexual, and socioeconomic disparities in the research, treatment, and government response to the disease, which persist to this day, and in some ways have worsened. The AIDS epidemic represents a disease of “the other” –the marginalized and stigmatized, and the lasting ramifications of medical prejudice.

Racial disparities in HIV/AIDS were evident early on in the epidemic, but were not explicitly addressed for several years [6]. CDC surveillance data and a corresponding Morbidity and Mortality Weekly Report (MMWR) in 1983 reveal that blacks constituted 26% of HIV cases, but neglect to mention that this was a disproportionately high number, compared to their representation in the population (12%). Racial prejudice seeped through the sparse media coverage. When newspapers did cover the high rates of HIV/AIDS among black Americans, they failed to provide context for the disparities, and framed the story as a problem of individual behavior, rather than structural or socioeconomic determinants [7]. From 1981-1983, only 5% of the New York Times articles covering the AIDS crisis mentioned African Americans, while they comprised 32% of all AIDS cases [8]. Limited media coverage may have acted as a double-edged knife—on the one hand, minimal coverage may have reflected a reduced level of deemed societal importance of the crisis among black Americans, and on the other hand, it may have caused a reduction in the extent to which the public considered racial disparities as an important issue.

Women were also overlooked as a population at risk, even though there had been many documented cases of AIDS in women, because of the prevailing notion that the disease was one of gay men [9]. In the 1980s, an increasing number of young women in the United States died of respiratory infections and pneumonia in areas of high AIDS burden, but were not reported as AIDS cases [10]. A group of researchers in 1982, concerned that the disease could affect women, applied for funding from the National Institutes of Health (NIH) but were turned down [11]. “AIDS was a man’s disease.” [12]. An article in a 1988 issue of the magazine Cosmopolitan in 1988 stated that women were safe to have unprotected sex with an HIV-positive man, because the public denied women’s risk [13]. If women were ever considered to have the disease, they were seen to be “spreaders” rather than “victims,” as illustrated by the backlash when news of a prostitute’s illness surfaced—headlines declared her a threat to the male heterosexual community, rather than show concern for her health [14]. Women’s health took the back burner, and the pervasive notion of women’s invulnerability to the disease prevented early diagnosis, treatment, and educational efforts. While gynecological symptoms of the disease presented themselves, it was not until the 1993 update of the case definition that medical conditions specific to women were included and women were seriously considered to be at risk for HIV [15]. The very next year, AIDS was announced to be the leading cause of death among women 24-44 [16]. There were undoubtedly countless women who died undiagnosed, unable to get care for lack of recognition of their condition.

In 1996, with the introduction of highly active antiretroviral therapy (HAART), there began to be a decline in the rate of new cases of HIV/AIDS and mortality [17]. At the same time, and for the first time, blacks accounted for a greater proportion of AIDS cases than whites. The advent of HAART brought optimism, improved health outcomes, and greater life expectancy, for those with access. For the disadvantaged and “the other”, it marks a period of greater divergence in disparity. Marginalized groups faced obstacles to accessing HIV care. A 1998 article reported the societal threat of HAART increasing the life expectancy of African Americans with AIDS, as it would mean more time for disease transmission to others [18]. In 1999, almost two decades into the epidemic, newspapers began reporting “people of color” as an at-risk group, a title that had previously generally been limited to the 4 H club. And people of color certainly were at risk — the risk of progression from HIV to AIDS and the risk for death within 3 years of AIDS diagnosis was greater for nonwhites than whites, between 1996 and 2001 [19].

There are staggering racial disparities in the HIV/AIDS epidemic to this day. Blacks and Hispanics constitute a hugely disproportionate percentage of new AIDS cases in the United States [20]. The estimated lifetime risk of being diagnosed with HIV is higher for blacks than whites (1 in 16 for black men, 1 in 104 for white men; 1 in 32 for black women, 1 in 588 for white women) [21, 22]. The general life expectancy of blacks in America is less than that of whites, and the disparity in mortality is increasing (blacks had 3 times higher mortality in 1987 and 8 times higher in 2011 than whites) [23, 24]. Black people in America receive less healthcare than whites, while paying more visits to the hospital and facing financial and organizational barriers to their care. Racial minorities are more likely to delay or do without medical care, and minorities receiving care for HIV/AIDS report feeling less satisfied with their care and feel less involved in medical decisions than do white patients [25, 26]. Racial minorities are less likely to receive HAART, and surveys of physicians revealed that biases regarding minority patients’ likeliness to adhere to treatment regimens affect treatment decisions and can result in reduced prescription of HAART in eligible minority patients. The reasons for these disparities are several-fold, ranging from structural and socioeconomic determinants, to distrust of medical establishments, to stigma and isolation.

Sexual, racial, and gender orientations intersect in health inequalities. Men who have sex with men (MSM) are the most affected HIV group, and within this category, African American MSM have a 6 times higher risk of HIV than white MSM [27]. Black women are 13% of all new HIV infections and 64% of all new infections among women, a rate 20 times higher than white women, and almost 5 times higher than Hispanic women [28]. The HIV mortality rate of black women in 2011 was 3 times higher than the mortality risk of white women at the peak of the AIDS epidemic in 1995 before HAART was introduced [29]. Black women face racial prejudice on top of gendered stigma and societal norms that can make seeking care and social navigation difficult [30].

Over the course of the epidemic, socioeconomic disparities in HIV/AIDS increased, such that the incidence of HIV/AIDS increased among communities of lower socioeconomic status even as the overall incidence rate decreased [31]. Lower socioeconomic status groups have higher rates of HIV than more affluent groups, and this discrepancy continues to grow [32]. Within SESs, the mortality rate of HIV/AIDS is 8-16 times higher for blacks than whites. The CDC reports the highest HIV prevalence within populations at and below the poverty line, and most cases are concentrated in distinct geographical urban areas and in the South [33]. Low socioeconomic status is associated with poorer access to medical care, including antiretroviral medications, and reduced health literacy. In a study of HIV positive homeless and unstably housed women, the greatest determinant on health outcomes were unmet basic needs such as food and shelter [34]. It has been estimated that as many as half of HIV-positive people in poor urban areas lack sufficient food. Thus, the disadvantages experienced by people of low socioeconomic status are several-fold, putting quality HIV/AIDS care even further out of reach.

Decreased access to healthcare and disease prevention strategies, reduced health literacy, higher levels of poverty, racial discrimination, social stigma, and lack of basic needs all contribute to the widening racial, sexual, and socioeconomic disparities in the HIV/AIDS crisis in the United States. The groups with the least access to care are increasingly those that need it the most. It is time that we address these issues and fundamentally change the way we provide care to disadvantaged groups. Unless the economic discrepancies and racial and sexual prejudice are remedied, HIV/AIDS will remain a disease of “the other.”

Endnotes:

[1] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 22.

[2] Kevin Moseby. “Two regimes of HIV/AIDS: The MMWR and the socio-political construction of HIV/AIDS as a ‘black disease.’” Sociology of Health and Illness 39 (2017): 1068-1082.

[3] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 24.

[4] David France. How to Survive a Plague: the Inside Story of How Citizens and Science Tamed AIDS. (New York: Vintage Books, 2016): 58-60.

[5] R. Stevens and SJ Hull. “The Colour of AIDS: An Analysis of Newspaper Coverage of HIV/AIDS in the United States from 1992-2007.” Critical Arts 27 (2013): 352-369.

[6] Kevin Moseby. “Two regimes of HIV/AIDS: The MMWR and the socio-political construction of HIV/AIDS as a ‘black disease.’” Sociology of Health and Illness 39 (2017): 1068-1082.

[7] R. Stevens and SJ Hull. “The Colour of AIDS: An Analysis of Newspaper Coverage of HIV/AIDS in the United States from 1992-2007.” Critical Arts 27 (2013): 363.

[8] Ibid., 363.

[9] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 22.

[10] Gina Corea. The Invisible Epidemic: the Story of Women and AIDS. (New York: Harper Collins, 1992): 6.

[11] Ibid., 11.

[12] Ibid., 12.

[13] Kat Campbell. “AIDS in New York: A Biography.” New York Magazine (2013). http://nymag.com/news/features/17158/.

[14] Gina Corea. The Invisible Epidemic: the Story of Women and AIDS. (New York: Harper Collins, 1992): 25-26.

[15] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 29-30.

[16] R. Stevens and SJ Hull. “The Colour of AIDS: An Analysis of Newspaper Coverage of HIV/AIDS in the United States from 1992-2007.” Critical Arts 27 (2013): 357.

[17] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 38.

[18] R. Stevens and SJ Hull. “The Colour of AIDS: An Analysis of Newspaper Coverage of HIV/AIDS in the United States from 1992-2007.” Critical Arts 27 (2013): 362.

[19] HI Hall, K McDavid, Q Ling, and A Sloggett. “Determinants of Progression to AIDS or Death After HIV Diagnosis, United States, 1996 to 2001.” Annals of Epidemiology 16 (2006): 824-833.

[20] Jamal Jones and Laura Salazar. “A Historical Overview of the Epidemiology of HIV/AIDS in the United States” in Understanding the HIV/AIDS Epidemic in the United States. (Switzerland: Springer International Publishing, 2016): 19-39.

[21] Kevin Moseby. “Two regimes of HIV/AIDS: The MMWR and the socio-political construction of HIV/AIDS as a ‘black disease.’” Sociology of Health and Illness 39 (2017): 1068.

[22] MY Sutton, et al. “A Review of the Centers for Disease Control and Prevention’s Response to the HIV/AIDS Crisis Among Blacks in the United States, 1981-2009.” American Journal of Public Health 99 (2009): S351-9.

[23] Gopal Singh, Romuladus Azuine, and Mohammad Siahpush. “Widening Socioeconomic, Racial, and Geographic Disparities in HIV/AIDS Mortality in the United States, 1987-2011.” Advances in Preventative Medicine (2013): 1-12.

[24] Raj Bhopal. “Spectre of Racism in Health and Health Care: Lessons From History and the United States.” BMJ 316 (1998): 1970-1973.

[25] Gopal Singh, Romuladus Azuine, and Mohammad Siahpush. “Widening Socioeconomic, Racial, and Geographic Disparities in HIV/AIDS Mortality in the United States, 1987-2011.” Advances in Preventative Medicine (2013): 12.

[26] Valerie Stone. “Optimizing the Care of Minority Patients with HIV/AIDS.” Clinical Infectious Diseases 38 (2004): 400-403.

[27] J. Pellowski, SC Kalichman, KA Matthews, and N Adler. “A Pandemic of the Poor: Social Disadvantage and the U.S. HIV Epidemic.” American Psychology 68 (2013): 197-209.

[28] Centers for Disease Control and Prevention. “Health, United States, 2016.” https://www.cdc.gov/nchs/data/hus/hus16.pdf#015

[29] Gopal Singh, Romuladus Azuine, and Mohammad Siahpush. “Widening Socioeconomic, Racial, and Geographic Disparities in HIV/AIDS Mortality in the United States, 1987-2011.” Advances in Preventative Medicine (2013): 11.

[30] ReD Associates. “Networks That Care: An Ethnographic Research Study of Black Women in New Orleans.” ViiV Healthcare (2017). https://us.viivhealthcare.com/media/124470/networks-of-care_final-web-version-reduced.pdf

[31] T. Niyonsenga, MJ Trepka, S Lieb, and LM Maddox. “Measuring Socioeconomic Inequality in the Incidence of AIDS: Rural-Urban Considerations.” AIDS and Behavior 17 (2013): 700-709.

[32] Gopal Singh, Romuladus Azuine, and Mohammad Siahpush. “Widening Socioeconomic, Racial, and Geographic Disparities in HIV/AIDS Mortality in the United States, 1987-2011.” Advances in Preventative Medicine (2013): 1-12.

[33] J. Pellowski, SC Kalichman, KA Matthews, and N Adler. “A Pandemic of the Poor: Social Disadvantage and the U.S. HIV Epidemic.” American Psychology 68 (2013): 197-209.

[34] Ibid., 11.