Addressing stigma and discrimination against people living with HIV

The relationship between HIV and stigma is long-standing and intertwined, with far-reaching implications for those living with the disease. In the early days of the HIV epidemic, HIV/AIDS was commonly called as “gay cancer,” causing LGBTQIA+ people and those living with HIV to experience profound shame and discrimination. The derogatory term “4H club” also emerged, further stigmatizing individuals at risk, including those who injected heroin, those with hemophilia and Haitian people. Another early name for AIDS was “gay-related immune deficiency,” or GRID. It was not until 1984 that HIV was characterized as the cause for AIDS and AIDS-related illnesses. While treatment advancements and knowledge of HIV have improved significantly over the years, HIV-related stigma persists today, with similar social discourses continuing to perpetuate negative attitudes toward people living with HIV.

HIV-related stigma interacts with structural inequities and may be exacerbated for populations marginalized due to their risk behaviors (eg, injection drug use), demographic characteristics (eg, socioeconomic status), and identity (eg, sexual orientation).^1-3 HIV stigma occurs at multiple levels: interpersonal, institutional, community, and legislative. It can also take multiple forms, including being isolated, ridiculed, physically abused, denied services, and denied employment. These manifestations differ by multiple intersecting factors, including gender, race and ethnicity, sexual orientation, and socioeconomic status, thus reflecting the underlying power dynamics within a society. Furthermore, local cultural practices and beliefs often legitimize HIV stigma.^2,4

Negative Impact of HIV Stigma

Patient-Level Consequences

Stigma and discrimination toward people with HIV have a detrimental effect on their physical and mental health. Discrimination ranges from policy-level factors, such as ambiguous laws that put individuals with HIV at a disadvantage, to denial of treatment by healthcare providers as well as institutional-level discrimination (eg, absence of gender-sensitive procedures for registering a transgender patient as an outpatient or inpatient). Other discriminatory practices include verbal harassment by hospital staff and other patients, and suboptimal care or delayed care by healthcare providers. Studies have documented the discrimination faced by people living with HIV and marginalized groups in the workplace. Schools and colleges are notably absent despite a plethora of anecdotal evidence and media reports.^5,6 The fear of being ostracized or rejected by others often leads individuals to avoid getting tested or seeking medical care, resulting in delayed diagnosis and an increased risk for transmission. Forty-one percent of people living with HIV experience negative behavior from others once they learn of their HIV status, and 29% report people avoiding contact with them.⁵

Studies have shown that HIV-related stigma and discrimination are associated with higher rates of depression, anxiety, and suicidal ideation among people living with HIV. Lack of retention in care is associated with poor clinical outcomes, such as unsuppressed viral load, which contribute to further HIV incidence.

Psychiatric disorders are diagnosed commonly among people with HIV, and depression is the most common diagnosis; some studies estimate a prevalence of more than 50%.⁷ Consequently, psychiatric comorbid conditions can increase the risk for nonadherence to medications and lower retention in care. Conversely, HIV stigma may deter patients from seeking care or being screened for depression. A cross-sectional study by Moore and colleagues assessing veterans with HIV demonstrated that among those with positive Patient Health Questionnaire-2 scores, participants who reported experiencing HIV stigma were more likely to be in treatment (chi-square test, 4.22; P=0.04).⁸ However, among all participants, it was noted that HIV stigma, shame, and other health problems were barriers to mental health treatment. People with HIV who miss visits in their first year of treatment have more than double the mortality risk as those retained in care. In addition, stigma also affects an individual’s quality of life, relationships, and employment opportunities.

Healthcare Provider-Level Consequences

HIV-related stigma also affects healthcare providers’ attitudes and behaviors toward people living with HIV, leading to inadequate care and treatment. Primary care providers may lack knowledge about HIV and its management, leading to suboptimal care and delayed referral to infectious disease specialists. Moreover, some providers may hold negative attitudes toward these patients, which can result in discrimination and substandard care. On the other hand, infectious disease specialists are more likely to have specialized knowledge and experience in managing HIV, but the limited number of specialists in some locations can pose a significant barrier to accessing care. People living with HIV also require significant primary care services, which ID specialists may not be comfortable managing. However, people with HIV often prefer to use one care provider out of fear of discrimination. It is important to recognize and address HIV-related stigma within healthcare settings to ensure that people living with HIV receive the best possible care and treatment.

Strategies for Reducing HIV Stigma

While significant strides have been made in the efforts to end the HIV epidemic and associated stigma, many areas still exist for improvement. Strategies for testing, diagnosis, treatment, prevention, and response to outbreaks have been detailed by the Department of Health and Human Services’ Ending the HIV Epidemic (EHE) initiative (DHHS 2022).⁹ Although the strategies outlined provide an excellent framework for providers and clinicians to enhance HIV care and prevention, they do not directly address the discrimination and stigma these patients experience. Below we outline several key approaches that can be used with the EHE strategies to improve HIV care for all.

Provider training and education

Increasing awareness of HIV diagnosis, treatment, and prevention among healthcare providers is essential to reducing stigma. In addition to education about available interventions in HIV care, providers should be taught the effects of stigma on the HIV epidemic and the impact of implicit bias. Implicit bias can lead to negative treatment of people with HIV or those who are at risk for HIV infection and further perpetrate healthcare avoidance. Lower implicit bias awareness and training has been associated with increased HIV stigma and discrimination, and thus, should be a primary focus in the destigmatization of HIV.¹⁰ Training about implicit bias in HIV care should include elements of biases based on race/ethnicity, sexual orientation and/or gender identity, and socioeconomic status. Furthermore, implicit bias training should be coupled with training focused on reducing HIV incidence such as universal testing, education for patients at risk for HIV infection, and general information for providers when caring for people living with HIV.¹¹

Establishing patient-centered care

Focusing on patient-centered care has been linked to improved health outcomes and retention in care in not only the management of HIV but many other health conditions.¹² By placing the patient at the center of care management, coordination, and medical decision making, providers can understand patient-specific needs and enhance the healthcare experience of the patient. Specific examples to accomplish this include incorporating an interdisciplinary team with specialists from medicine/primary care, nursing, social work, and pharmacy to support patients in their healthcare. Social workers can specifically help patients identify resources in the community to address social determinants of health, such as unstable housing, transportation, and food insecurity. Likewise, involving pharmacy services in the care team can facilitate optimal management of medications and enhanced cost-effectiveness for both the patient and healthcare system.

Creating a supportive environment

Through the combination of enhanced provider education and subsequent decrease in bias, and increased offerings of patient-centered care, an expected outcome is the development of a supportive environment for HIV patient care. However, intentional steps can be implemented to ensure a supportive environment is available for all patients, specifically those from vulnerable communities. Examples include having diverse patient education and advertising materials in waiting areas and patient rooms providing culturally competent and community-specific education about sexual health, HIV risk factors and transmission facts/myths, and resources in the community for those affected by HIV. Additional efforts can include providing cultural competence training to all staff and providers, incorporating sex-positive and LGBTQIA+-friendly displays and materials in the practice, and engaging in community-building activities such as LGBTQIA+ Pride events or offering networking/support groups.

Conclusion

Healthcare providers can make conscious efforts to work toward eliminating stigma and discrimination in HIV care through thoughtful training, inclusive practices, and community outreach. By reducing stigma and discrimination, healthcare providers can improve linkage and retention in care and health outcomes in people living with HIV.

References

1. Andrasik M, Broder G, Oseso L, et al. Stigma, implicit bias, and long-lasting prevention interventions to end the domestic HIV/AIDS epidemic. Am J Public Health. 2020;110(1):67-68.
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3. Department of Health and Human Services. Ending the HIV epidemic. Updated July 1, 2022. Accessed March 15, 2023. https://www.hiv.gov/ federal-response/ ending-the-hiv-epidemic/ overview/
4. Geter A, Herron AR, Sutton MY. HIV-related stigma by healthcare providers in the United States: a systematic review. AIDS Patient Care STDS. 2018;32(10):418-424.
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7. Moore RC, Marquine MJ, Straus E, et al. Predictors and barriers to mental health treatment utilization among older veterans living with HIV. Prim Care Companion CNS Disord. 2017;19(1):10.4088/PCC.16m02059.
8. Odimegwu CO, Akinyemi JO, Alabi OO. HIV-stigma in Nigeria: review of research studies, policies, and programmes. AIDS Res Treat. 2017;2017:5812650.
9. Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13-24.
10. UNAIDS. AIDS Epidemic Update. UNAIDS/World Health Organization; December 2005. Accessed March 15, 2023. https://data.unaids.org/ publications/ irc-pub06/ epi_update2005_en.pdf
11. Van Brakel WH. Measuring health-related stigma—a literature review. Psychol Health Med. 2006;11(3):307-334.
12. van Coppenhagen B, Duvenage HS. Prevalence of depression in people living with HIV and AIDS at the Kalafong Provincial Tertiary Hospital Antiretroviral Clinic. S Afr J Psychiatr. 2019;25:1175.

By Kevin Astle, PharmD, BCPS, BCACP, AAHIVP, CDCES, and Tam Phan, PharmD, AAHIVP