The Science of Stigma: Understanding and Addressing HIV Stigma

NIAID Now | November 04, 2019

Credit: NIAID

Since the HIV epidemic emerged in the 1980s, extraordinary progress has been made in understanding, treating, and preventing HIV. Yet stigma about the condition and people living with it persists. NIAID Now spoke with Dianne Rausch, Ph.D., director of the Division of AIDS Research (DAR) at NIH’s National Institute of Mental Health, and Gregory Greenwood, Ph.D., DAR program officer and stigma expert, about HIV-related stigma, its effects on health, and how research is informing strategies to reduce stigma and improve HIV outcomes.

Let’s start with the basics. What is stigma?

Dr. Rausch: Stigma can generally be defined as “a mark of shame or discredit.” Anything different from the norm can create stigmatizing attitudes or feelings, and these can stimulate negative behaviors.

Dr. Greenwood: People may experience stigma related to health conditions, such as HIV and mental illness, and sociodemographic characteristics, such as race, ethnicity, gender, and sexual orientation. Certain behaviors or experiences, such as substance use and sex work, also can be stigmatized. Many people experience stigma related to more than one of these categories. The term “intersectional stigma” refers to the intersection and interaction of these multiple stigmatized identities.

What are some of the ways that HIV stigma influences health for people living with or at risk of HIV?

Dr. Greenwood: Stigma acts as a barrier to getting tested for HIV, accessing HIV prevention and treatment services, and staying in care. Stigma operates at multiple levels. “Internalized stigma,” or self-stigma, is the personal endorsement of prejudice and stereotypes, like feeling you are “unclean” or “not worthy.” Stigma also operates at the interpersonal level, where people are treating you differently or discriminating against you. People also may experience “anticipated stigma”—an expectation of discrimination from others, even if you have not experienced discrimination in the past. And stigma operates at a structural level, meaning that access, policy, or legal issues hamper your ability to get the care you need or want.

Dr. Rausch: Access to health care is a major issue facing people living with HIV, and where you have access to care can make a big difference. If you have access to a clinic focused on HIV and other sexually transmitted infections, you might not feel uncomfortable. But if you are in an environment where there aren’t many people like you, you may feel like an outsider and be afraid to seek care.

How can research on HIV stigma be translated to improve people’s health and quality of life?

Dr. Greenwood: Research informs development of interventions to respond to stigma and mitigate its harmful impacts. Such interventions may seek to support people with HIV to cope with experienced stigma and overcome internalized stigma. They also may involve reaching out to health care providers, community members or local leaders to shift harmful norms and change negative attitudes about HIV. Scientific evidence suggests that these kinds of approaches can help reduce HIV stigma, and there’s also evidence they’re starting to improve outcomes.

What can stigma research tell us about HIV Undetectable = Untransmittable (U=U), which is widely viewed as a key concept in helping dismantle HIV stigma?

Dr. Rausch: U=U is helping to “normalize” HIV by increasing awareness of the substantial, evidence-based benefits of HIV treatment. This can certainly contribute to reducing internalized stigma and stigmatizing and discriminatory attitudes and behaviors towards people living with HIV, as evidence shows that taking HIV medications daily as prescribed reduces the amount of HIV in the body to an undetectable level. Increased awareness of HIV due to U=U should also lead to an increase in HIV testing, and more people with HIV will become aware of their status and still may face HIV-related stigma. Additional interventions that complement U=U will be needed to reduce and remove the stigma and discrimination that remain critical barriers to HIV care, treatment, and prevention. For example, negative and judgmental attitudes of health care providers about HIV-negative people seeking pre-exposure prophylaxis (PrEP) and other HIV prevention services need to be addressed. 

Dr. Greenwood: We’re very excited about a supplementary funding award related to the proposed Ending the HIV Epidemic initiative that we recently made to one of NIMH’s AIDS Research Centers to look specifically at the rollout of U=U messaging in Philadelphia. Researchers will conduct a one-year study to assess exposure and attitudes toward U=U. This study will help develop a blueprint for adapting tailored U=U messaging to specific communities greatly affected by HIV.

What else do we need to learn about HIV stigma?

Dr. Greenwood: Developing a better understanding of intersectionality is a major focus for us. HIV is highly concentrated in socially disadvantaged communities affected by issues such as poverty, hunger, lack of stable housing, and uneven access to care. A context of marginalization in which intersecting forms of disadvantage and discrimination compound the negative effects of stigma for people needs to be addressed.

Dr. Rausch: We need to develop and test approaches to reduce intersectional stigma and ultimately improve HIV prevention and treatment outcomes. HIV stigma can be mediated or accelerated by depression, alcohol and substance use disorder, and social isolation. How you intervene in the intersections of all these factors can have far-reaching effects. For example, you could intervene to reduce social isolation or support recovery from substance use disorder, which could improve depression, which could then decrease internalized HIV stigma. Or you could intervene by decreasing food insecurity. If someone’s no longer hungry, they could go back to work, and that could alleviate depression.

Are there lessons we can learn from other diseases?

Dr. Greenwood: Yes! In fact, an NIH-wide effort in this area has been underway for years. While the cause of stigma may differ between health conditions, the consequences of stigma, such as experiencing discrimination and being excluded from quality health care, are similar. We are working on developing broad approaches for measuring and understanding stigma, as well as intervention strategies to reduce stigma. Such approaches could be easy to implement across different conditions for people facing the intersectionality of many types of stigma.

This interview has been edited and condensed for clarity.

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