Abstract
The prevalence of discrimination in healthcare settings among HIV patients in the United States is unknown. The Medical Monitoring Project (MMP) is a complex sample survey of adults receiving HIV medical care in the United States. We analyzed nationally representative MMP data collected 2011–2015. We assessed the prevalence of self-reported healthcare discrimination, perceived reasons for discrimination, and factors associated with discrimination among persons with HIV diagnoses ≤5 years before interview (n = 3,770). Overall, 14.1% of patients living with HIV (PLWH) experienced discrimination, of whom 82.2% attributed the discrimination to HIV. PLWH reporting poverty, homelessness, or attending a non-Ryan White HIV/AIDS Program (RWHAP) facility were more likely to report discrimination compared with other groups. Of patients attending non-RWHAP facilities, discrimination was higher among those in poverty (27.5%) vs. not in poverty (15.1%). Discrimination was associated with homelessness regardless of facility type, and was highest among homeless persons attending non-RWHAP facilities.
Healthcare discrimination was commonly reported among PLWH, and was most often attributed to HIV status. Discrimination was higher among those reporting poverty or homelessness, particularly those attending non-RWHAP facilities. Incorporating practices, such as antidiscrimination training, in facilities may reduce healthcare discrimination.
Keywords: Discrimination, HIV/AIDS, United States, Ryan White
Introduction
Discrimination occurs when a person experiences unfair treatment because they are perceived to be part of an undesirable group (NHAS, 2015). Discrimination in healthcare settings can be overt, such as refusing to treat a patient, or it can be subtle, such as not giving a patient equitable care (Schuster et al., 2005). In the 1990s, 26% of patients with HIV receiving care in the U.S. reported discrimination in healthcare settings after their HIV diagnosis. Reducing discrimination is a national HIV prevention goal (HIV.gov, n.d.).
In healthcare settings, adults with diagnosed HIV who are in care (hereafter referred to as “patients living with HIV” or “PLWH”) have described situations where providers seemed afraid of them, discouraged them, or treated them differently (Zukoski & Thorburn, 2009). Discrimination has been reported across a range of clinical settings and types of clinic staff (Schuster et al., 2005; Zukoski & Thorburn, 2009). Studies suggest that discrimination discourages some PLWH from attending HIV provider visits or adhering to HIV medicines (Schuster et al., 2005), which is critical for achieving viral suppression (Cohen et al., 2011).
National estimates for the prevalence of healthcare discrimination among PLWH in U.S. healthcare settings were last reported during the mid-1990s by the HIV Cost and Services Utilization Study (HCSUS) (Schuster et al., 2005). Recent estimates are needed. There is also limited information on the perceived reasons for discrimination in healthcare settings (Schuster et al., 2005), which could help inform discrimination-reduction interventions.
The objectives of this analysis were to describe the prevalence of self-reported discrimination in healthcare settings among PLWH with recent diagnoses, and the behavioral, clinical, and facility characteristics associated with discrimination.
Materials and methods
Medical monitoring project
The Medical Monitoring Project (MMP) is an HIV surveillance system designed to produce nationally representative estimates of behavioral and clinical characteristics of adults receiving HIV care in the U.S using interview and medical record data (Bradley et al., 2015; Iachan et al., 2016). For the 2011–2014 cycles, MMP used a 3-stage, probability-proportional-to-size sampling method, which sampled states and one territory, then outpatient facilities providing HIV care, and finally PLWH ≥18 years old who reported ≥1 medical care visit(s) in a participating facility during January–April of each cycle year. This analysis used pooled, cross-sectional data from June 2011–May 2015. We also examined data on the characteristics of the HIV care facilities where respondents were sampled.
All sampled states and territories participated in MMP. Facility response rates ranged from 83–86% and patient response rates ranged from 49–56%. Data were weighted to account for unequal selection probabilities and both facility and patient non-response.
Measures
To measure discrimination, we asked respondents if, after receiving an HIV diagnosis, anyone in the healthcare system: (1) exhibited hostility or a lack of respect towards them, (2) gave them less attention than other patients, or (3) refused them service. Discrimination was defined as reporting at least one discriminatory experience in a healthcare setting since HIV diagnosis. Respondents reporting discrimination indicated the personal characteristics to which they attributed the discrimination: HIV status, gender identity, sexual orientation, race/ethnicity, and injection drug use.
Analytic methods
We analyzed the prevalence of any healthcare discrimination since HIV diagnosis among all persons receiving HIV medical care (n = 19,466), and then among PLWH diagnosed ≤5 years before interview date (n = 3,770). We restricted to persons with recent diagnoses to measure discrimination that occurred relatively recently, since patients receiving care in the early decades of the HIV epidemic likely had different experiences of discrimination (Herek, Capitanio, & Widaman, 2002).
Among persons with recent diagnoses, we next present the prevalence of the characteristics to which they attributed the perceived discrimination. We then assessed differences in discrimination by sociodemographic, behavioral, clinical, and facility characteristics using bivariate Rao-Scott chi-square tests.
We assessed whether attending a facility funded by the Ryan White HIV/AIDS Program (RWHAP) was an effect modifier of the relationship between discrimination and socioeconomic factors, specifically poverty and homelessness, since anti-discrimination is a core value of RWHAP (HRSA, n.d.).
The Centers for Disease Control and Prevention (CDC) determined MMP was public health surveillance used for disease control, program, or policy purposes (CDC, 2010). Local institutional review board approval was obtained at participating project areas and facilities when required. Informed consent was obtained from all interviewed participants.
Results
Among all PLWH in care, 22.8% (95% CI 21.1, 24.5) reported any discrimination in healthcare settings since diagnosis (data not shown in tables). Among PLWH in care with recent diagnoses, 14.1% reported any discrimination. Among PLWH reporting discrimination (n = 503), 82.2% attributed discrimination to their HIV status and 32.1% to their sexual orientation (Table 1). Among PLWH with recent diagnoses, discrimination was significantly more common among those who experienced poverty in the past 12 months, reported homelessness in the past 12 months, or received care from a non-RWHAP-funded facility (Table 2).
Table 1.
Discrimination in healthcare settings experienced by adults living with HIV in care with recent diagnoses, Medical Monitoring Project 2011–2014 (n = 3,770).
| Question | n | Weighted % (95% CI) |
|---|---|---|
| Has anyone in the healthcare system done any of the following to you since testing positive for HIV? | ||
| Exhibited hostility or a lack of respect towards you? | 428 | 12.0 (10.9, 13.2) |
| Given you less attention than other patients? | 289 | 8.4 (7.3, 9.5) |
| Refused you service? | 129 | 3.6 (3.0, 4.2) |
| Reported any discriminationa | 503 | 14.1 (12.8, 15.5) |
| Did the discrimination occur because of your … ?b | ||
| Characteristic | n | Weighted % attributed discrimination to characteristic (95% CI) |
| HIV status | 383 | 82.2 (77.9, 86.6) |
| Gender | 58 | 10.8 (7.7, 13.8) |
| Sexual orientation | 148 | 32.1 (25.9, 38.3) |
| Race/ethnicity | 66 | 12.5 (9.6, 15.3) |
| Injection drug use | 22 | 4.7 (2.2, 7.2) |
Respondent experienced hostility or a lack of respect, was given less attention, or was refused service at a healthcare facility since testing positive for HIV.
Respondent could select more than one option.
Table 2.
Sociodemographic, behavioral, clinical, and facility characteristics of adults living with HIV in care with recent diagnoses reporting any discrimination, Medical Monitoring Project 2011–2014 (n = 3,770).
| Variable | n | Any discrimination | Weighted % (95% CI) | No discrimination | Weighted % (95% CI) | p-value |
|---|---|---|---|---|---|---|
| Gender | ||||||
| Male | 2838 | 373 | 14.0 (12.3, 15.8) | 2465 | 86.0 (84.2, 87.7) | 0.08 |
| Female | 877 | 118 | 13.8 (11.7, 16.0) | 759 | 86.2 (84.0, 88.3) | Ref |
| Transgendera | 53 | 12 | 24.5 (11.7, 37.4) | 41 | 75.5 (62.6, 88.3) | 0.05 |
| Race/ethnicity | ||||||
| Black | 1746 | 184 | 11.5 (9.6, 13.4) | 1562 | 88.5 (86.6, 90.4) | Ref |
| Hispanic/Latinob | 912 | 126 | 13.3 (11.0, 15.7) | 786 | 86.7 (84.3, 89.0) | 0.05 |
| White | 913 | 153 | 18.2 (15.1, 21.2) | 760 | 81.8 (78.8, 84.9) | 0.09 |
| Otder/Multiracialc | 199 | 40 | 21.3 (15.1, 27.5) | 159 | 78.7 (72.5, 84.9) | 0.02 |
| Age (years) | ||||||
| 18–29 | 973 | 127 | 14.0 (11.1, 16.9) | 846 | 86.0 (83.1, 88.9) | 0.95 |
| 30–39 | 952 | 134 | 14.7 (12.3, 17.2) | 818 | 85.3 (82.8, 87.7) | 0.57 |
| 40–49 | 963 | 133 | 15.0 (12.5, 17.6) | 830 | 85.0 (82.4, 87.5) | 0.37 |
| ≥50 | 882 | 109 | 12.7 (10.3, 15.1) | 773 | 87.3 (84.9, 90.0) | Ref |
| Sexual orientation | ||||||
| Homosexual | 1195 | 173 | 15.3 (12.7, 17.9) | 1022 | 84.7 (82.1, 87.3) | 0.55 |
| Heterosexual | 1297 | 167 | 13.4 (11.4, 15.5) | 1130 | 86.6 (84.5, 88.6) | Ref |
| Bisexual | 270 | 39 | 15.3 (10.7, 19.9) | 231 | 84.7 (80.1, 89.3) | 0.69 |
| Education | ||||||
| < High school | 711 | 79 | 11.6 (8.2, 15.1) | 632 | 88.4 (84.9, 91.8) | Ref |
| High school or equivalent | 1108 | 127 | 12.9 (10.4, 15.3) | 981 | 87.1 (84.7, 89.6) | 0.58 |
| > High school | 1950 | 297 | 15.7 (14.3, 17.2) | 1653 | 84.3 (82.8, 85.8) | 0.04 |
| Povertyd in past 12 months | ||||||
| Above poverty level | 1736 | 216 | 13.4 (11.5, 15.3) | 1520 | 86.6 (84.7, 88.5) | Ref |
| At or below poverty level | 1814 | 268 | 15.6 (13.8, 17.4) | 1546 | 84.4 (82.6, 86.2) | 0.04 |
| Homelessnesse | ||||||
| Homeless in past 12 months | 421 | 88 | 22.4 (16.9, 27.9) | 333 | 77.6 (72.1, 83.1) | <0.01 |
| Not homeless in past 12 months | 3349 | 415 | 13.1 (11.7, 14.6) | 2934 | 86.9 (85.4, 88.3) | Ref |
| Incarcerated in past 12 months | ||||||
| Yes | 223 | 39 | 18.7 (13.4, 24.0) | 184 | 81.3 (76.0, 86.6) | 0.05 |
| No | 3546 | 463 | 13.8 (12.4, 15.3) | 3083 | 86.2 (84.7, 87.6) | Ref |
| Country of birth | ||||||
| Born outside U.S. | 666 | 73 | 11.1 (6.7, 13.4) | 593 | 88.9 (86.6, 91.3) | Ref |
| Born in U.S. | 3103 | 430 | 14.8 (13.2, 16.3) | 2673 | 85.2 (83.7, 86.8) | 0.01 |
| Injection drug use | ||||||
| Injected drugs in past 12 months | 84 | 18 | 25.1 (12.0, 38.1) | 66 | 74.9 (61.9, 88.0) | 0.04 |
| Did not inject drugs in past 12 months | 3675 | 481 | 13.8 (12.5, 15.2) | 3194 | 86.2 (84.8, 87.5) | Ref |
| ART use and adherencef | ||||||
| Not taking ART | 343 | 40 | 13.8 (9.9, 17.8) | 303 | 86.2 (82.2, 90.1) | 0.97 |
| Taking ART, Not Adherent | 400 | 53 | 13.2 (9.8, 16.6) | 347 | 86.8 (83.4, 90.2) | Ref |
| Taking ART, Adherent | 2927 | 395 | 14.3 (12.8, 15.8) | 2532 | 85.7 (84.2, 87.2) | 0.58 |
| Sustained viral suppression in past 12 monthsg | ||||||
| All viral loads <200 copies/ml | 2152 | 293 | 14.4 (12.7, 16.2) | 1859 | 85.6 (83.8, 87.3) | 0.59 |
| ≥1 viral loads ≥200 copies/ml | 1618 | 210 | 13.8 (11.9, 15.6) | 1408 | 86.2 (84.4, 88.1) | Ref |
| Clinical status | ||||||
| AIDS or CD4+ cell count 0–199 cells/μl (nadir) | 1914 | 250 | 14.0 (12.0, 16.0) | 1664 | 86.0 (84.0, 88.0) | 0.08 |
| No AIDS and CD4+ cell count 200–499 cells/μl (nadir) | 1431 | 192 | 13.7 (11.7, 15.7) | 1239 | 88.3 (84.3, 88.3) | Ref |
| No AIDS and CD4+ cell count ≥500 cells/μl (nadir) | 402 | 60 | 17.2 (13.0, 21.3) | 342 | 82.8 (78.7, 87.0) | 0.42 |
| Ryan White HIV/AIDS Program (RWHAP) funded facilityh | ||||||
| Yes | 2877 | 359 | 13.4 (12.1, 14.8) | 2518 | 86.6 (85.2, 87.9) | Ref |
| No | 643 | 115 | 18.3 (13.6, 23.0) | 528 | 81.7 (77.0, 86.4) | 0.03 |
| Facility typei | ||||||
| Public | 1435 | 180 | 13.5 (11.2, 15.8) | 1255 | 86.5 (84.2, 88.8) | Ref |
| Private | 2151 | 295 | 14.5 (12.9, 16.1) | 1856 | 85.5 (83.9, 87.1) | 0.53 |
| Other | 115 | 21 | 17.7 (11.4, 24.0) | 94 | 82.3 (76.0, 88.6) | 0.21 |
| Facility sizej | ||||||
| Small | 158 | 23 | 15.5 (8.0, 23.1) | 135 | 84.5 (76.9, 92.0) | 0.72 |
| Medium | 1386 | 194 | 14.5 (12.1, 17.0) | 1192 | 85.5 (83.0, 87.9) | 0.97 |
| Large | 2226 | 286 | 13.8 (12.3, 15.3) | 1940 | 86.2 (84.7, 87.7) | Ref |
| Single pace of care in past 12 months | 3758 | 501 | 14.1 (12.8, 15.5) | 3257 | 85.9 (84.5, 87.2) | 0.20 |
Patients were classified as transgender if sex at birth and gender reported by patient were different, or if patient chose transgender in response to the question about self-identified gender.
Hispanic/Latinos might be of any race. Patients are classified in only one race/ethnicity category.
Persons who reported multiple racial identities or a race/ethnicity other than non-Hispanic white, non-Hispanic black, or Hispanic/Latino were categorized as “other/multiracial.”
Poverty guidelines as defined by the Department of Health and Human Services (HHS). More information regarding the HHS poverty guidelines can be found at http://aspe.hhs.gov/poverty/faq.cfm.
Living on the street, in a shelter, in a single-room-occupancy hotel, or in a car.
Antiretroviral therapy (ART) use and adherence were defined as a three-level categorical variable: not taking ART; taking ART, but not adherent; and taking ART, adherent. Adherence was defined as self-reported 100% adherence to all HIV medicine doses in the past 3 days.
Sustained viral suppression was defined as all HIV viral load tests documented as undetectable or <200 copies/mL during the past 12 months.
Ryan White HIV/AIDS Program (RWHAP) funding was defined as receiving any funding from any Ryan White source, including parts A, B, C, or D.
Facility type was categorized as public-owned, private-owned, or other type of ownership.
Facility size was categorized as small (<50 patients), medium (50–400 patients), and large (>400 patients).
Among patients receiving care at RWHAP-funded facilities (Table 3), there was no significant difference in discrimination between patients experiencing poverty (14.9%) vs. not experiencing poverty (12.5%; odds ratio [OR]: 1.2). However, among patients attending non-RWHAP facilities, those experiencing poverty (27.5%) had higher odds of reporting discrimination than patients not experiencing poverty (15.1%, OR: 2.1). Homelessness was associated with higher odds of discrimination among persons who attended RWHAP facilities (21.5% homeless vs. 12.3% non-homeless) and non-RWHAP facilities (34.0% homeless vs. 17.0% non-homeless), but there was a slightly stronger effect among persons attending non-RWHAP facilities (RWHAP OR: 1.9 vs. non-RWHAP OR: 2.5).
Table 3.
Percentage of adults living with HIV with recent diagnoses reporting discriminationa stratified by povertyb, homelessnessc, and attending a facility funded by Ryan White HIV/AIDS Program (RWHAP)d, Medical Monitoring Project 2011–2014.
| Discrimination |
||||||
|---|---|---|---|---|---|---|
| Yes |
No |
|||||
| n | % | n | % | Odds Ratio | 95% CI | |
| RWHAP | ||||||
| Poverty in past 12 months | 1.2 | 0.9, 1.5 | ||||
| Yes | 213 | 14.9 (13.0, 16.8) | 1312 | 85.1 (83.2, 87.0) | ||
| No | 132 | 12.5 (10.4, 14.5) | 1042 | 87.5 (10.4, 14.5) | ||
| Homelessness in past 12 months | 1.9 | 1.3, 2.9* | ||||
| Yes | 68 | 21.5 (15.0, 27.9) | 280 | 78.5 (72.1, 85.0) | ||
| No | 291 | 12.3 (11.0, 13.7) | 2238 | 87.7 (86.4, 89.0) | ||
| Non-RWHAP | ||||||
| Poverty in past 12 months | 2.1 | 1.3, 3.5* | ||||
| Yes | 42 | 27.5 (18.0, 36.9) | 124 | 72.5 (63.1, 82.0) | ||
| No | 69 | 15.1 (10.5, 19.7) | 384 | 84.9 (80.3, 89.5) | ||
| Homelessness in past 12 months | 2.5 | 1.4, 4.6* | ||||
| Yes | 17 | 34.0 (20.7, 47.2) | 32 | 66.0 (52.8, 79.3) | ||
| No | 98 | 17.0 (12.3, 21.6) | 496 | 83.0 (78.4, 87.7) | ||
p < 0.05.
Discrimination was defined as reporting at least one discriminatory experience in an HIV healthcare setting: exhibited hostility or a lack of respect towards you to given you less attention than other patients, or refused you service.
Poverty guidelines as defined by the Department of Health and Human Services (HHS). More information regarding the HHS poverty guidelines can be found at http://aspe.hhs.gov/poverty/faq.cfm.
Living on the street, in a shelter, in a single-room-occupancy hotel, or in a car.
Ryan White HIV/AIDS Program (RWHAP) was defined as a facility receiving any Ryan White funding from any Ryan White source.
Discussion
More than 1 in 8 recently diagnosed PLWH receiving medical care reported discrimination in healthcare settings, most of whom attributed the discrimination to their HIV status. This updated estimate is lower than the 26% prevalence of discrimination among PLWH in care reported by HCSUS in the mid-1990s (Schuster et al., 2005), but the population is limited to PLWH who were recently diagnosed.
Healthcare discrimination was higher among those living in poverty, but only among those attending non-RWHAP facilities. Higher discrimination was reported among homeless patients regardless of facility type. Patients attending RWHAP facilities are more likely to have better health outcomes compared with patients attending non-RWHAP facilities (Bradley et al., 2016; Weiser et al., 2015). Lower levels of discrimination at RWHAP clinics may play a role in better health outcomes, which could be explored in future studies.
RWHAP facilities use a medical home model, offering comprehensive, patient-centered care, which reduces staff burnout, wait times, and increases patient satisfaction (Beane, Culyba, DeMayo, & Armstrong, 2014; Valverde et al., 2004). RWHAP facilities utilize a multi-disciplinary approach, where care, case management, and support services are integrated and patient-provider relationships are emphasized (Beane et al., 2014). These factors may contribute to lower perceptions of discrimination in RWHAP facilities.
RWHAP facilities serve low-income PLWH and incorporate anti-discrimination and cultural competency in staff training (HRSA). RWHAP funds the AIDS Education and Training Centers (AETCs), which provide HIV education and training for providers and clinic staff (Johnson, 2011). AETC programs have reduced HIV stigma among clinic staff (Mulligan, Seirawan, Galligan, & Lemme, 2006). Further, quality improvement activities, which hold programs to the same standards, are required of RWHAP-funded programs (Agins, 2014). It is possible that RWHAP trainings and quality requirements contribute to lower discrimination. Non-RWHAP facilities may benefit from similar anti-discrimination trainings and quality improvement activities.
Limitations and strengths
There were limitations to this analysis. Discrimination data were based on perceptions rather than objective measurements; however, research has linked perceptions of discrimination to poor health outcomes (Schuster et al., 2005). Second, this analysis is restricted to persons receiving care, but discrimination in a healthcare setting could be related to dropping out of care. Since discrimination could have occurred at any point since diagnosis, we cannot assess temporality. Lastly, we do not have information about whether discrimination occurred at the facility from which the person was sampled. However, 99.7% of respondents reported attending one HIV care facility in the past 12 months. Therefore, it is reasonable to assume the discrimination occurred at their usual care facility.
Despite these limitations, strengths of this analysis include the probability-based sampling, which allowed us to provide nationally representative estimates and a large, geographically diverse sample.
It is important that all PLWH are in care and adherent to HIV medicines, yet discrimination could potentially dissuade persons from seeking care (Kinsler, Wong, Sayles, Davis, & Cunningham, 2007). Because persons attending RWHAP-funded facilities report less discrimination, facilities may consider adopting characteristics of RWHAP facilities (e.g., emphasizing comprehensive care and anti-discrimination training for providers and staff) to help reduce discrimination. All facilities may benefit from additional trainings on working with patients experiencing homelessness. Facilities may consider reviewing their practices to ensure all patients are treated equally and with respect.
Acknowledgements
We thank participating MMP respondents, providers, community and provider advisory boards, and project areas. We also acknowledge the contributions of the Clinical Outcomes Team, the Behavioral and Clinical Surveillance Branch, and Antigone Dempsey and Heather Hauck from HRSA.
Funding
Funding for the Medical Monitoring Project is provided by the Centers for Disease Control and Prevention.
Footnotes
Disclosure statement
No potential conflict of interest was reported by the authors.
Disclaimer
The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.
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