Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality, or person”. More specifically, “social stigma” refers to the disapproval of, or discrimination against, a person based on perceivable characteristics that distinguish them from the rest of society.
Some common examples of innate traits that are associated with stigma include race, age, gender identity, sexual orientation, and age. In addition to these traits, stigma is also prevalent in people with various health conditions. While there are many conditions that can have stigma attached to them (such as mental illness, substance use disorders, diabetes, etc.), one of the most heavily stigmatized conditions over the course of many decades has been Human Immunodeficiency Virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS). HIV is the virus that, if left untreated, can lead to AIDS. AIDS is an assortment of syndromes and conditions.
It is reported that over 50% of people living in countries with available data have discriminatory attitudes towards those with HIV. The Centers for Disease Control and Prevention (CDC) describes the main components of HIV stigma as:
- Believing that only certain groups of people can get HIV
- Making moral judgements about people who take action to prevent transmission of HIV
- Feeling that those who get HIV are at fault due to their own life choices
Regardless, HIV stigma affects those living with HIV on an even wider scale than solely discriminatory remarks and judgements. Barriers to health care, isolation from family and friends, and difficulty finding employment or educational opportunities are all major consequences that can result from HIV stigma.
Health Outcomes in Stigmatized People with HIV
HIV stigma is present in many communities across the globe. However, it is not just harmful words and prejudices – HIV stigma can have significant effects on the health and well-being of individuals with HIV. A 2016 study showed higher rates of depression, lower levels of social support, lower levels of adherence to antiretroviral medications, and lower access to and usage of health and social services amongst patients who reported stigma from their diagnosis. Relationships were also observed between HIV-related stigma and anxiety, quality of life, physical health, emotional and mental distress, and sexual risk practices.
A different study from 2018 investigated health outcomes and stigma among a group of patients in an urban HIV clinic. The researchers found evidence of an association between reported stigma and viral non-suppression, which can lead to treatment failure and worsening of disease. Eventually, this could lead to development of AIDS-related illnesses. These are defined as illnesses caused by organisms such as parasites, fungi, and bacteria that can cause severe disease in people with HIV/AIDS due to having a weakened immune system. Poor cognitive and mental health outcomes found in the previously mentioned study were also discovered in addition to psychosocial measures such as level of physician trust and social support.
Both of the studies mentioned, as well as a handful of other studies, help illustrate the impact that HIV stigma has on people living with it. Hopefully these studies will also generate further investigation into the topic.
The question then becomes – how and why does stigma lead to such significant differences in health?
Unfortunately, the answer is not a simple resolution. There are many layers to this issue – the below diagram from Avert, an international HIV/AIDS advocacy group, summarizes the progression from diagnosis to detrimental outcome(s):
Image 1: How Stigma Leads to Sickness
As seen in Image 1, many factors play into not only the initial stigmatization (including race, gender identity, and sexuality), but also the effects of that stigmatization.
One of the most concerning and significant ways that stigma manifests is through our healthcare system and its providers. This is where pharmacists, and other healthcare professionals in general, need to ensure we understand our role in the perpetuation of these outcomes as well as ways to prevent them.
Prevalence of HIV Stigma in Healthcare
As healthcare providers in this country, it is highly important to be constantly aware of how our own implicit biases lead to real consequences for people with HIV. This is particularly important with HIV/AIDS given the complexity of the condition itself combined with the aforementioned worsening of health outcomes.
A 2016 review led by the CDC assessed healthcare providers’ likelihood of stigmatizing their patients with HIV by looking at 3 different criteria: attitudes/beliefs/behaviors, quality of care, and education/training. The researchers found that providers who underwent less HIV-stigma training were more likely to show stigmatizing behaviors. This training is becoming more standardized across the healthcare industry, but is still likely not as robust as it should be in order to appropriately meet patients’ needs.
Another study conducted in the southern United States in 2016 evaluated healthcare personnel’s attitudes towards HIV patients via a questionnaire. They discovered several specific factors that had a stronger correlation to HIV stigma than others did: Protestant religion, white race, and certain characteristics of the clinic (i.e., STD-treating vs non-STD-treating). The authors of the study suggested that healthcare institutions implement policies and procedures to prohibit discrimination specifically against HIV patients.
After better understanding the potential negative impacts our underlying biases/stigma toward patients with HIV can cause, we must then learn how to act upon them.
Ways to Help Reduce Stigma
The CDC’s Let’s Stop HIV Together campaign promotes many evidence-based and reasonable strategies to help reduce stigma against HIV patients. One primary component of stopping the stigma against HIV is by eliminating problematic language when we talk about people with HIV. The CDC has created a language guide for this, which is summarized below in Table 1.
Table 1: Correcting Problematic Language
| Problematic Word/Phrase | Preferred Word/Phrase | Rationale |
| To “catch” or “pass on” HIV/AIDS | To “be diagnosed with” or “transmit” | HIV/AIDS cannot be caught and is not hereditary |
| Unprotected sex | Sex without a condom or medicines to prevent/treat HIV | Many ways now exist outside of condom use to practice safe sex |
| Body fluids | Specific type of fluid | Not all fluids transmit HIV |
| Referring to HIV/AIDS as “battle” or “war” | Response to HIV/AIDS | Avoid militaristic connotation |
| High-risk groups | High-risk behavior, highly affected communities, key populations | Implying that just being a part of a particularly group can result in HIV diagnosis |
| Victims, sufferers, sick | Person with HIV | Implying powerlessness and segregate HIV patients |
| Positives, AIDS/HIV carriers | HIV-positive person, people with HIV | HIV does not define a person |
The use of language is something that everyone can fully control on an individual level and it can make a positive impact on people with HIV.
There are also system-level changes that can occur which may also help alleviate stigma of HIV. Specific training/education for providers about HIV stigma, policies and procedures that can prohibit discrimination against HIV patients, and regular educational sessions about HIV (such as “Grand Rounds” presentations, topic discussions with students, staff development modules, etc.) could all be beneficial.
Overall, people living with HIV have significant stigma placed upon them from society. This can be related to innate traits such as race, gender identity, and sexuality. It can also equally be due to choice of employment (such as sex work) or sexual behavior. Ultimately, all forms of stigma against people with HIV have been shown to lead to poor health outcomes, particularly mental health-related. There is evidence to show stigma also affects overall disease progression.
It is crucial for healthcare professionals and non-healthcare professionals alike to understand the potential consequences of our unconscious biases and our uses of stigmatizing language. More importantly, it is crucial to act upon these realizations.
Education and awareness is only the first step in stopping HIV stigma – it is important to enact system-wide changes such as new and revised policies and procedures to truly make an impact for all patients.
Resources to Learn More
- CDC’s Facts about HIV Stigma
- HIV Stigma and Discrimination – AVERT
- Standing Up To Stigma (HIV.gov)
- World Health Organization’s Key Facts on HIV/AIDS
References:
- HIV Stigma and Discrimination. AVERT Global Information and Education on HIV and AIDS. Found at: https://www.avert.org/professionals/hiv-social-issues/stigma-discrimination. Last updated 10 October 2019. Accessed 9 April 2021.
- Ways to Stop HIV Stigma and Discrimination. Centers for Disease Control and Prevention’s Stop HIV Together Campaign website. Found at: https://www.cdc.gov/stophivtogether/hiv-stigma/. Last updated 2 February 2021. Accessed 9 April 2021.
- Standing Up to Stigma. HIV.gov website. Found at: Standing Up to Stigma | HIV.gov. Last updated 24 February 2020. Accessed 9 April 2021.
- JFS Stories that Matter, 2016. Ending the Mental Illness Stigma. [image] Available at: <https://blog.jfsseattle.org/ending-the-mental-illness-stigma/> [Accessed 22 April 2021].
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