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25% PLWH Report Discrimination Experience in Health Care Setting
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About one in 4 (25%, 95% CI: 22 to 27) people with diagnosed HIV who had a care visit in the past 12 months reported experiencing any discrimination in an HIV care setting. [21.9% of PLWH >50 report an incident of discrimination.]
We estimate that 1 in 4 adults in the United States receiving HIV care experienced discrimination in a HIV health care setting during the past 12 months. However, the mean and median discrimination scale scores were low, which suggests that most of the participants reported experiencing relatively little discrimination in their HIV care settings. This finding is of note because studies have shown that discrimination due to HIV status, race/ethnicity, sexual orientation, gender, and other social characteristics impedes the abilities of PWH to access health care and maintain suppressed viral loads.10,25 Notwithstanding other patient-provider-related factors (eg, trust, health literacy) that facilitate favorable health outcomes for PWH, our findings suggest that HIV care providers and institutions that deliver HIV care in the United States may be providing HIV care in contexts that are conducive to equitable treatment for PWH.
However, despite the importance of this finding, nearly one quarter (25%) of participants reported at least one past-year experience of discrimination in a health care setting. Using nationally representative, probabilistic data, Valverde et al26 found that the prevalence of perceived health care discrimination attributed to one's HIV status declined from 24% to 15% from 1996 to 2011 through 2013. However, the definition of discrimination used was limited to 3 items (hostility or lack of respect, less attention, or refusal of service) and captured only discrimination attributed to HIV status. Our measure is more comprehensive in that it incorporates other forms of, and reasons for, discrimination. Although more than 1 in 4 attributed the discrimination they experienced to their HIV status, nearly 1 in 5 attributed it to their sexual orientation, race/ethnicity, or income/social class. These findings suggest that discrimination in US health care settings is multifactorial and discriminatory practices related to other characteristics may need to be incorporated into antidiscrimination training for health care facility staff. In 2018, Pitasi et al27 reported that 21% of US adults and adolescents believed that "a lot of prejudice and discrimination" exists against PWH.
The persistence of discrimination against PWH is a cause for concern, not only because freedom from discrimination is a basic human right, but also because it can prevent PWH from acquiring care needed for optimal health. For example, the United States annually appropriates approximately $26 billion in HIV research and programs.28 Despite this large investment, 24% of persons with diagnosed HIV infection in 42 jurisdictions did not receive care in 2018 (ie, did not have ≥1 CD4 or viral load test), and 35% of PWH in these areas were not virally suppressed.29 Because discrimination remains one of the most formidable barriers to HIV care, PWH who experience discrimination in health care settings remain vulnerable to not receiving care and thus poor health, which can also increase their risk of transmitting HIV. Some of our findings, although exploratory, support this assertion. Although experiencing any discrimination in HIV health care settings was not associated with either of our viral suppression measures, experiencing discrimination was associated with missing HIV care visits, not taking ART, and lower ART adherence.
JAIDS DEc 15 2021 McCree, Donna Hubbard PhD, MPH, RPh; Beer, Linda PhD; Jeffries, William L. IV PhD, MPH, MA; Tie, Yunfeng PhD; Fagan, Jennifer MA; Crim, Stacy M. MPH
HIV-related stigma is a social process that occurs in the context of power and entails negative beliefs and attitudes toward persons with or at risk of HIV infection.7-9 HIV-related discrimination, an outcome of HIV-related stigma,7-9 is unfair and unjust treatment of individuals because of their HIV status and/or their membership in a group perceived to be at greater risk of HIV.7-9 HIV-related discrimination can occur in the presence of other forms of discrimination, for example, discrimination based on race, sex, gender or gender identity, and sexual orientation [AGE].7 In health care settings, discrimination can result in poorer quality or denial of care for PWH.2 It is also associated with poorer health outcomes, including depression,10-13 reduced linkage to care,10-13 negative patient-provider relationships,14-17 lower antiretroviral therapy (ART) adherence,14-17 and lower viral suppression in PWH.12 Therefore, efforts are needed to identify experiences with, and inform strategies to address, HIV-related discrimination in HIV health care settings among PWH.
Abstract
Background:
HIV-related discrimination in health care settings is associated with negative health outcomes among persons with HIV (PWH). This article describes and compares differences in the prevalence of self-reported experiences with discrimination in health care settings by sociodemographic and clinical care factors among persons with diagnosed HIV in the United States.
Methods:
We analyzed interview and medical record data collected during June 2018-May 2019 from 3850 PWH who had received HIV care in the past 12 months. We calculated weighted percentages and associated 95% confidence intervals and assessed the association between any experience of discrimination and selected sociodemographic and clinical characteristics using prevalence ratios with predicted marginal means.
Results:
Approximately 25% of PWH who had an HIV care visit in the past 12 months reported experiencing any discrimination. Experiences with discrimination were significantly more prevalent among persons aged 18-29 years (34%); transgender persons (41%); persons of gay (25%), bisexual (31%), or other (40%) sexual orientations; and persons who did not have a regular provider (39%), lived at/below poverty level (28%), were homeless (39%) or incarcerated (37%) in the past 12 months. PWH who experienced discrimination were more likely to have missed at least one HIV care visit, not be taking antiretroviral therapy, and have missed antiretroviral therapy doses. Recent and sustained viral suppression were not significantly associated with experiencing any discrimination.
Conclusions:
Interventions that address the sociocultural and structural factors associated with discrimination in all health care settings are needed to improve health outcomes among PWH and end the HIV epidemic in the United States.
RESULTS
About one in 4 (25%, 95% CI: 22 to 27) people with diagnosed HIV who had a care visit in the past 12 months reported experiencing any discrimination in an HIV care setting. The mean discrimination score was 1.1 (CI: 1.0 to 1.2), and the median discrimination score was 0.0 (CI: 0.0 to 0.2; Table 1). The most endorsed item was "feeling like a doctor or nurse was not listening to what you were saying," and the least endorsed item was "having a doctor or nurse act as if they were afraid of you." Among persons who reported any discrimination in the past 12 months, 28% (CI: 24 to 31) attributed it to their HIV status, 8% (CI: 7 to 10) to their gender, 18% (CI: 15 to 22) to their sexual orientation, 18% (CI: 14 to 21) to their race or ethnicity, 18% (CI: 15 to 22) to their income or social class, and 4% (CI: 3 to 6) to their injection drug use (results not summarized in tables).
Experiences of discrimination in health care settings varied significantly by age, gender, gender identity, and socioeconomic status (Table 2). Specifically, the prevalence of experiencing any discrimination in a HIV care setting during the past 12 months was significantly higher among persons aged 18-29 years (34%) and 40-49 years (27%) compared with those older than 50 years (22%, P = 0.002 and P = 0.012, respectively). Experiencing discrimination was also significantly more prevalent among transgender persons (41%) compared with cisgender women (22%, P < 0.001), Black (23%) and White men (25%) compared with Black women (19%, P = 0.045 and P = 0.002, respectively), and persons of gay (25%), bisexual (31%), or "other" (40%) sexual orientations compared with straight persons (22%, P = 0.019, P = 0.001, P = 0.001, respectively). Finally, experiencing discrimination was also significantly more prevalent among persons with only public insurance (27%) compared with those with any private insurance (22%, P = 0.035), who did not have a regular HIV care provider (39%) compared with those who did (24%, P = 0.005), who lived at or below poverty level (28%) compared with those who lived above the poverty line (23%, P < 0.001), who were homeless in the past 12 months (39%) compared with those who were not (23%, P < 0.001), or who were incarcerated in the past 12 months (37%) compared with those who were not (24%, P < 0.001). Discrimination did not significantly differ by whether a person attended a Ryan White HIV/AIDS Program-funded facility (P = 0.357).
Regarding care outcome variables (Table 3), compared with persons who did not experience discrimination in HIV care settings, persons who experienced discrimination were more likely to have been seen in the ER (39% vs. 51%, P < 0.001), been hospitalized (17% vs. 26%, P < 0.001), reported symptoms of anxiety or depression (12% vs. 29%, P < 0.001 and 14% vs. 29%, P < 0.001, respectively), missed at least 1 HIV care visit (21% vs. 33%, P < 0.001), not been taking ART (3% vs. 6%, P < 0.001), and missed ART doses (37% vs. 51%, P < 0.001). Discrimination was also significantly associated with the continuous ART adherence score; the odds ratio for each 10-unit increase in the ART adherence scale score on experiencing any discrimination was 0.87 (95% CI: 0.84 to 0.90, P < 0.001, data not summarized in table). Recent and sustained viral suppression were not significantly associated with experiencing any discrimination.
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