Stigma Remains Primary Health Concern in Patients With HIV/AIDS

Treatment for HIV has made numerous strides since the first case was reported in 1981.1 Although people can now live full lives with HIV, including through the usage of antiretroviral therapy and addressing the virus' complications, the stigma surrounding HIV can be stifling when it comes to receiving that care. Identifying and addressing that stigma to reach out to those who need treatment is vital for both treating and preventing HIV.

Stigma around HIV began in the 1980s when the first cases of the virus were identified. Due to stigma around homosexuality at that time, many states passed laws to punish any behaviors that could spread HIV, including sex with the same sex.2 Detractors at the time argued that these laws could inadvertently lead to the spread of HIV due to fear of disclosing or identifying their HIV status. Many states at the time also had sodomy laws that outlawed same sex contact or nonprocreative sex, which helped to reinforce stigma in these areas.2

HIV stigma can affect individuals living with HIV in numerous ways, both in their physical and mental health. | Image credit: fizkes - stock.adobe.com

HIV stigma comes in many forms. HIV.gov defines stigma as any “irrational or negative attitudes, behaviors, and judgements toward people living with or at risk of HIV.”3 This can include people refusing contact with someone living with HIV, refusing care to those who have HIV, or socially isolating someone who is living with HIV. Those who are at a higher risk of HIV may be affected by stigma due to their gender identity, sexual orientation, drug use, race/ethnicity, or sex work. On top of this, internalized stigma is prevalent in people living with HIV, as they may have negative feelings or thoughts based on their status. About 80% of people receiving care for HIV reported feeling internalized stigma.3 Depression, anxiety, isolation, and feelings of shame are all results of this.

Health care is a major area affected by stigma. People living with HIV are often afraid of what others will think about their diagnosis—whether it be family, friends, or strangers—due to not wanting to come out as gay or bisexual or to reveal themselves as an intravenous drug user. This can lead to patients avoiding getting tested, hiding HIV status from partners, avoiding medical care, not taking medication, or hiding health problems. Health care providers can also stigmatize individuals living with HIV, which can lead to patients self-medicating. A study conducted in the southeastern US found that 51% of patients experienced discrimination related to their HIV in health care settings.5

Addressing HIV stigma can be difficult for those who experience it. However, there are some methods by which to improve the lives of those who face stigma, through either their own intervention or by improving their treatment by those around them. Educating people both with and without HIV about the virus is vital to decreasing stigma. Learning about how HIV spreads and how it can affect others can help to prevent individuals from making assumptions about those living with HIV and those at highest risk of HIV. Individuals living with HIV should also know the forms of protection that are offered to them, including the Americans with Disabilities Act that prohibits discrimination in the workplace and housing, among other things, for anyone living with HIV/AIDS.

Use of specific language when referring to people living with HIV or surrounding the condition as a whole can also help in reducing stigma. This can include separating HIV and AIDS in every day speech, avoiding describing a diagnosis as “catching” AIDS or HIV, and to use the term risk factors in reference to behaviors that increase the chances of transmitting or getting HIV rather than risky behavior. Making sure that these practices are upheld through your own actions and by educating others can help in reducing the stigma surrounding HIV through the normalization of language and lifestyles.

Individuals living with HIV can also seek support either from people they trust or from their community. Support groups can help people who cannot turn to family or friends or if they want to give that support to others; local public health departments are often helpful in finding this resource.4 Getting support from family or friends through honesty is also a possible path to take if the individual living with HIV is comfortable being honest with their support network.

Stigma surrounding HIV can be debilitating for those living with the virus, especially as they require higher level of care to maintain their health. If stigma is preventing a patient from seeking care, it could lead to a consistently unhealthy life or even premature death given the ways that the lives of people living with HIV do not have to be disrupted due to advancements in treatment. Addressing stigma through giving support to persons living with HIV, educating yourself and your community about HIV, and changing the language around HIV can all help to address stigma, thereby helping individuals living with HIV who experience health care and mental health symptoms due to the stigma they experience.

References

1. Shaw M. A Q&A With HIV/AIDS Pioneer Dr Michael Gottlieb. AJMC®. June 4, 2021. Accessed December 18, 2024. https://www.ajmc.com/view/a-q-a-with-hiv-aids-pioneer-dr-michael-gottlieb

2. Purcell DW. Forty years of HIV: the intersection of laws, stigma, and sexual behavior and identity. Am J Public Health. 2021;111(7):1231-1233. doi:10.2105/AJPH.2021.306335

3. Standing up to stigma. HIV.gov. Updated July 18, 2023. Accessed December 18, 2024. https://www.hiv.gov/hiv-basics/overview/making-a-difference/standing-up-to-stigma

4. Dealing with discrimination when you have HIV. Johns Hopkins Medicine. Accessed December 18, 2024. https://www.hopkinsmedicine.org/health/conditions-and-diseases/hiv-and-aids/dealing-with-discrimination-when-you-have-hiv

4. Crockett KB, Turan B, Whitfield S, et al. Patient and provider perspectives on HIV stigma in healthcare settings in underserved areas of the US south: a mixed methods study. AIDS Behav. 2022;26:112-124. doi:10.1007/s10461-021-03470-y