How Ongoing Stigma Perpetuates the HIV/AIDS Pandemic

Blurred silhouette of a man walkingSince the beginning of the HIV/AIDS pandemic, stigma has played a significant role in the perpetuation of the spread of HIV. The template set in the early 1980s, when HIV was first dubbed “gay-related immune deficiency,” resulted in shame and other negative feelings that persist to this day. One of the reasons for this is that social stigma is a complex psycho-social phenomenon that has not been adequately studied to the degree it can influence effective policy, programs, and funding.

In early March 2016, a meeting on HIV stigma was held at the White House, jointly hosted by the Office of National AIDS Policy (ONAP), National Institutes of Health (NIH), and National Institute of Mental Health (NIMH). Among the key points discussed at this meeting:

  • HIV-related stigma is remarkably consistent around the world, with many more similarities than differences.
  • HIV-related stigma and discrimination is often intertwined with other kinds of stigma and discrimination, and HIV-related stigma and rights violations are often interrelated, meaning addressing stigma is a human rights issue.
  • While there has been an uptick in measuring stigma and its impact, stigma continues to be under-studied as a social determinant of health.

It was readily agreed that stigma is the most significant barrier to ending the HIV/AIDS pandemic. For this to change, there has to be a far greater push to both understand the complex, multifaceted nature of stigma and a major shift in how efforts to develop non-stigmatized approaches are done.

The current top-down, demographically driven model of HIV prevention is an example of what not to do. By targeting high-risk groups, the definition of who should be tested gets narrowed in the minds of the public, a mind-set that is hard to break. Every time there is an image or message about HIV that points to someone who is “not me,” the very stigma we need to overcome gets reinforced.

How Stigma Affects People with HIV/AIDS

Isaac Awuley Addico, an artist and activist in Ghana, wrote in The Stigma Education (2007), “People with HIV/AIDS who are stigmatized are shunned, discredited, rejected, or even penalized sometimes by strangers, often by friends and family, which makes coping with and fighting this disease all the more challenging. Discrimination against people living with HIV/AIDS is expressed in so many explicit and implicit ways that many may not realize that they could be contributing to the problem, or that their judgments could be negatively affecting those around them.”

The current top-down, demographically driven model of HIV prevention is an example of what not to do.

Prejudice, negative attitudes, and abuse tend to be particularly rampant among populations whose conditions and struggles are not well understood. A lack of knowledge regarding HIV and its risk factors can lead to dangerous false beliefs, including the notion that it’s always a “death sentence” and that it’s always the result of behaviors that some consider dishonorable or disapproved (homosexuality, infidelity, drug use, etc.).

Even the LGBT community in the United States is not without blame in the perpetuation of stigma and discrimination toward people with HIV, so it is important for everyone recognize the harmful effects of stigma. These often include silence, denial, secrecy, isolation, and withdrawal. In addition, stigma contributes to self-stigma—leading to self-blame, shame, and rejection.

Some of the consequences of stigma among people with HIV/AIDS include:

  • Loss of opportunities, income, and livelihood
  • Poor care within the health sector
  • Withdrawal of caregiving and other support
  • Loss of hope
  • Feelings of worthlessness
  • Reputation damage

Perhaps most concerning is that fear of stigma and discrimination can drive reluctance to get tested, disclose HIV status, and take needed medication.

How Therapists Can Help

In this landscape, what can mental health professionals do to be a part of de-stigmatization while actively helping people who have HIV or are at risk for HIV?

Here are some recommended steps, based on Addico’s writing:

  • Begin with yourself. Examine your attitudes, assumptions, and beliefs about HIV/AIDS and people living with HIV/AIDS.
  • Reach out to community. Examine the role you play to promote healthy and inclusive dialogue, understanding, and support for people living with HIV/AIDS in your community.
  • Make your office a safe space to explore religion and spirituality. People living with HIV/AIDS are represented in all faith communities, but often have found rejection, shame, and damnation instead of acceptance and support. Take time to explore possible lingering trauma from these experiences.
  • Learn and grow. Keep up to date on information, research, and treatment approaches pertaining to HIV/AIDS.
  • Express your knowledge. Share your knowledge, especially about how HIV is and is not transmitted. Find creative and compelling ways to share information within your networks. Likewise, invite the people you work with in therapy to educate you. This can help empower and free them from hidden stigma.

A good counseling experience can greatly help newly diagnosed people explore the impact of their HIV status while also providing a safe forum to work through the stigma that is often a barrier to healthy living in the face of HIV.

References:

  1. AVERT.org. (2016, March 1). Stigma, Discrimination and HIV. Retrieved from http://www.avert.org/professionals/hiv-social-issues/stigma-discrimination
  2. The Friends of AIDS Foundation. (n.d.). Breaking the HIV Stigma. Retrieved from http://www.friendsofaids.org/stigma.html
  3. White House Blog. (2016, March 30). White House Meeting on HIV Stigma Examines Interventions, Measures, Actions. Retrieved from https://blog.aids.gov/2016/03/white-house-meeting-on-hiv-stigma-examines-interventions-measures-actions.html

© Copyright 2016 GoodTherapy.org. All rights reserved. Permission to publish granted by Bradley D. Ogilvie, MS, LPC, LMFT, therapist in Washington, District of Columbia

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

  • 11 comments
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  • LisaO

    LisaO

    May 2nd, 2016 at 9:33 AM

    I guess I just don’t think about there still being such a stigma associated with AIDS and HIV anymore but I suppose that could be in Western countries, and that maybe there are far greater implications in countries globally where access and availability of care is not as accessible as it is here.

  • Brad

    Brad

    May 2nd, 2016 at 2:01 PM

    LisaO – I am curious about where you don’t see any stigma. From what I have seen, it is pretty global. Even in places where incidence is high, it is often hard for gay men to access testing and good counseling.

  • LisaO

    LisaO

    May 2nd, 2016 at 4:24 PM

    Weird Brad because I think that you totally got something very different from my reply than what I actually said. I don’t think that there is Anthony that implies that there is no stigma, just that I do not see it nearly as badly as that once was. I am sure that there are problems in the gay community, but is this not a disease that affects men and women, gay and straight? I don’t think that it’s impact is limited nor do I think that there is any shame in seeking out care.

  • Mason

    Mason

    May 3rd, 2016 at 8:38 AM

    The struggle remains real, and yes, there are still some pockets in society that have a very hard time not only gaining access to healthcare, as well as people who are never going to show acceptance or compassion to others. But I have to say that I do believe that there have been more improvements over the past ten years or so, not only with how society perceives this disease as well as access to treatment and care. Those resources are out there but I know that for certain demographics it still may not feel like they are very readily available for them.

  • Brad

    Brad

    May 3rd, 2016 at 12:04 PM

    The thing about the power of stigma is that it is very easy for all of us to disconnect and deny our own vulnerabilities. This is partly why I suspect that as long as certain demographics are targeted or focused on for testing and education, we are only further entrenching the stigma phenomenon that narrows our individual and collective bandwidth, often wasting resources.

  • Mitchell

    Mitchell

    May 4th, 2016 at 8:55 AM

    I know that we have miles to go before this is completely eradicated but we do have to admit that progress is still being made incrementally.

  • Juniper

    Juniper

    May 5th, 2016 at 1:24 PM

    There is so much education that is out there that is still seems unimaginable to me that there are still pockets of the population all over the world that are still struggling so mightily with this crisis. I feel terrible for the children who grow up infected with HIV from the moment they are born and who ahve lost all of their family members to this destructive disease. It is a shame that it took so long for us to realize that this was not just a “gay” disease and that people deserve care no matter who they are and how the disease was acquired. This is still something that worldwide is in no way under control and it can’t be forgotten just because something new has come along to scare us.

  • liza

    liza

    May 7th, 2016 at 5:31 AM

    I am sure that as a therapist you see so many different people from different walks of life who are dealing with things in a multitude of different ways.
    Learning how to reach each and every one of them on a level that they are comfortable with has to be quite a challenge.

  • Bella

    Bella

    May 9th, 2016 at 2:57 PM

    In many ways I feel that the more people are made to feel ashamed then the less likely it will be for them to seek out the help that they need.

    They will just believe that no one really cares about them and that possibility the lives of others would be better without them around.

  • trent

    trent

    May 10th, 2016 at 2:10 PM

    I’m behind because here I am thinking that lack of funding is the biggest problem that is being faced with research and development of a cure.

  • Brad

    Brad

    May 10th, 2016 at 6:15 PM

    Trent – research may be lacking (at least, innovative research that challenge the status quo), but in my experience, funding is not as big an issue. It’s where the funding goes that is the problem. Current funding is tied up in top-down, demographic-driven programs that perpetuate the cultural stigma and perpetuating a notion that more money will change the paradigm. It is the system itself that is a part of the problem, when it comes to stigma and prevention. These changes need to be bottom-up. So more research and less top-heavy approaches are what is needed, I think.

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