Stigma Index Empowers People With HIV to Make Stigma Visible, Confront Injustice

Laurel Sprague Offers Plain Talk on Stigma and Gives an Update on the First Year of the PLHIV Stigma Index in the U.S.

Laurel Sprague
Laurel Sprague

HIV stigma is slippery. People can unknowingly play into HIV stigma, or not recognize the impact of stigma in their community. And stigma is enacted at all levels -- by individuals, by communities, through public and private structures and in social and legal polities.

Given all this, how do we pin down, document and confront HIV stigma? Since 2008, the People Living with HIV (PLHIV) Stigma Index has measured and revealed the shape of stigma and discrimination experienced by people living with HIV. And the Stigma Index isn't a study that delivers a report to sit on shelves. Planning and carrying out the index empowers people with HIV, and is itself a force of addressing HIV stigma.

The PLHIV Stigma Index launched in the United States on World AIDS Day 2013. As its first birthday approached, TheBody.com caught up with Laurel Sprague for an email check-in. Sprague, the Sero Project's research director, has been living with HIV for over 20 years and is the national coordinator of the PLHIV Stigma Index in the U.S.

Hi, thanks so much for taking the time to update TheBody.com on the PLHIV Stigma Index!

Many thanks to you and TheBody.com for your interest and support, not to mention your own efforts to combat HIV-related stigma.

In simple terms: What is stigma and what is HIV stigma?

Stigma is a process of devaluing people based on some characteristic of who they are. It is a social construction -- by which I mean that it is created by people -- that sets up some members of the community as more credible or valuable than others.

Stigma works by "othering" groups of people: labeling certain characteristics as different and undesirable, assigning negative stereotypes to people with those characteristics, and then systematically excluding those people from full inclusion in social life.

When I talk about stigma, I find it important to stress that those without the stigmatizing characteristics do not simply receive neutral treatment. Instead, they are treated as if they are more valuable and are given countless messages that they deserve better treatment than others in their community.

HIV-related stigma occurs when social norms devalue the lives and experiences of people living with HIV. The stigma people face is not only about HIV status but also about racism, homophobia, sexism, transphobia and many other forms of stigma and discrimination. These are intertwined with stigma based on HIV status in the communities and lives of people with HIV.

The effects of stigma on the lives of people with HIV are well documented at this point and include missed doses of medication; fear of HIV testing; avoiding medical care; violence at the hands of intimate partners; hiding one's status to avoid violence, losing employment or housing, and other forms of discrimination; and missing out on the care and support that people with other life-threatening medical conditions can expect from people around them.

Stigma is something that individuals do, but also can be at the community level, systemic, etc. How do you define the different levels of stigma? How does the Stigma Index assess these different levels?

This is absolutely true. Too often, stigma is talked about as if it is an individual process, which masks how pervasive and damaging stigma really is.

The Stigma Index questionnaire included questions about stigma that respondents have experienced -- and also anticipated stigma that may keep people from health care and social and family activities, and internalized stigma that people turn inward. It assesses stigma in health care, family, community, faith, education and workplace settings. It also explores systemic stigma, such as that which exists in laws and policies and that enacted by public authorities, including HIV criminalization, immigration laws, coercive policing, and detention policies.

In addition to these manifestations of stigma, the Stigma Index asks respondents about their feelings of empowerment, their challenges to stigma directed at them or others, and their resilience.

How does the PLHIV Stigma Index involve people with HIV?

The PLHIV Stigma Index is a research and action project created and led by and for people living with HIV. Partnerships are developed between networks of people with HIV and local researchers, government and community-based organizations. All interviewers and interviewees are people living with HIV. The questionnaire asks about experiences of stigma and discrimination, support systems, health and strategies for resilience. The study results are used for evidence-based programming and advocacy, led by local people living with HIV and based on their priorities and lived experiences.

The project is more than research. It is a stigma intervention, creating spaces and support for people living with HIV to talk together about their experiences, build networks across different affected communities, challenge mistreatment together, and develop a positive shared identity.

In particular, with this project, we are focused on raising attention and sharing solutions to issues of stigma as they relate to major life issues for people living with HIV, such as access to health care and HIV treatment, housing, employment and freedom from violence.

What is unique about HIV in the United States that affects how you are conducting the PLHIV Stigma Index here?

I am not sure that there is much that is truly unique about HIV in the U.S., but there are some important issues that haven't been highlighted yet in previous implementations that we want to highlight here.

Probably the biggest of these is the way that racism interacts with HIV stigma in the U.S. and, second to that, is the power that states have to set social policy. Our lives -- even our ability to survive -- depends to a great extent on where we live in this country.

We also have to work with the reality that most people in the U.S. are not familiar with the global human rights frameworks that apply to them or with the global commitments that have been made regarding the meaningful involvement of people living with HIV in the response to the epidemic. In the U.S., we rarely talk about the human right to the highest attainable standard of health or responsibilities of our government to protect these rights.

Further, while we have some strong civil rights protections, the U.S. has not ratified many international human rights treaties that might be used to challenge discriminatory treatment in regional or international bodies.

The national steering committee members for the U.S. project have been remarkable in their commitment to making sure that we are asking the right questions. We have all committed to the goal of documenting and reporting the experiences of stigma for different groups of people living with HIV, especially those who are often left out of national conversations or spoken for by others instead of welcomed to speak for themselves.

Because of this, we have written some new questions and are testing them in our Detroit pilot. We created an additional module about stigma and discrimination in detention facilities (prisons, jail, immigration centers, etc.), and added questions to better understand how stigma affects the care continuum, as well as questions about changes resulting from the Affordable Care Act. We are hoping to add another module that focuses specifically on stigma experienced by transgender women living with HIV.

There is so much that we want to learn from all of this. There are two big goals that are equally important in my view. The first is to understand, document and share the experiences of stigma for people living with HIV, including ways in which the forms and locations of stigma are different, and similar, for different groups. The second goal is to examine how this model -- in which people living with HIV who might not encounter each other otherwise are brought together to share information about their lives, listen to each other, and then develop joint strategies for change -- makes a difference in people's internalized stigma, community connections within and beyond HIV communities, and overall health and well-being.

The PLHIV Stigma Index has been conducted in over 50 countries worldwide. What have you learned by what you have found in other countries that is shaping how you are doing the Stigma Index in the U.S.?

Many, many lessons and experiences from other countries have shaped the U.S. implementation. Perhaps most directly, our training curriculum for the U.S. pilot was designed in part by Kenly Sikwese, the coordinator of the Zambia Stigma Index project, based on the global curriculum and lessons learned from across southern Africa.

A few other key lessons from around the world that inform our U.S. work include:

  • The need to make sure that a broad coalition of stakeholders is engaged from the beginning. If people aren't fully engaged from the outset, when the results come back and demonstrate that stigma is occurring and damaging people's lives, they are likely to become defensive.
  • The importance of paying close attention to the stigma that occurs among people living with HIV. This stigma keeps positive people from seeking support and developing a shared, empowered identity. It is a source of strength for us, as communities of people with HIV, if we can look at the ways in which we have excluded members of our communities and address those. It's also a model for the anti-stigma and solidarity work we ask of others.
  • If the project leaders don't specifically invite and welcome people living with HIV who are the most marginalized -- young gay men and transgender women of color, young people of all races and backgrounds, sex workers, people who use drugs, people who have been incarcerated, and others -- their voices will not be heard in this project. As a result, our understanding of HIV-related stigma will be inaccurate and partial. Inclusion happens because of intention, not by magic.
  • People living with HIV and supportive community members, working together, can address and reduce the negative effects that stigma and discrimination cause. The only sustainable way to change HIV stigma is through leadership by people living with HIV.

The PLHIV Stigma Index launched in the United States last World AIDS Day. What has happened in the last year, and what will happen in the year ahead? When will it wrap up, and then what happens?

In 2014, we finished adapting the questionnaire for the U.S. and we started the pilot implementation, led by a strong coalition of people living with HIV in metro Detroit. By the end of the year, we will have finished the interviews and will be working with the University of Michigan Sex Lab [Center for Sexuality and Health Disparities] to analyze the results.

In 2015, we will release the results and start the community planning and advocacy work to respond. We will examine the new questions that we wrote to see how well they worked as part of the larger questionnaire, doing a bit of refinement of the questionnaire, and then moving on to implementations around the U.S. We also must actively continue the fundraising work to make sure that the full range of voices of positive people will be included in the project.

Over the next few years, we are planning to conduct implementations across the country. The project won't be in every community but the national steering committee has developed a plan that ensures that the diversity of our communities will be represented. Currently, we are actively working with coalitions of people living with HIV in New York State, Newark, Philadelphia, Louisiana and California. We believe it is also critical to include multiple southern states, Washington, D.C., Puerto Rico, Native American reservations and underserved rural communities within the U.S. implementation.

Once the research phase is complete in each location, the advocacy, program and policy work begins. In addition, we are encouraging some jurisdictions to use the initial implementation as a baseline and follow up at regular intervals to measure progress. In the end, we will have both local and national data to inform our efforts to ensure that all people with HIV can live, and, more than that, can live lives of dignity within communities in which they are able to develop and flourish in ways that are important to them.

On the Facebook page of the Stigma Index, you recently posted a graphic about "research justice." What does that mean to you, and how is the Stigma Index a force of research justice?

Research justice is research conducted collaboratively with a community, in which those who are participants in the research are respected and treated as agents in shaping their own lives. Participants are included in determining important questions to study, study design, interpretation of the results, and ownership of the results.

The PLHIV Stigma Index International Partnership has put a great deal of thought into developing research informed by principles of justice. The guidance stresses continuously that the process is as important as the results. The project is always lead by a network of people living with HIV. There is an aspect of economic justice as people with HIV are employed and trained to manage the project, conduct good interviews, and recruit participants. Training and assistance for communities is available to support their decisions for how to use the data to address discriminatory attitudes and behaviors. In the U.S., we have asked our steering committee to commit to always orienting the project toward the greater inclusion of those in our communities who are most marginalized.

What the Stigma Index offers is a way to strengthen local organizations and networks of people with HIV through providing them with data about their own lives that can be used to press decision makers to enact good policies.

How can people support the Stigma Index?

They can let us know they are with us!

Email me or join our Facebook page. If someone is living with HIV and wants to join the Global Network of People Living with HIV North America, they can go to and select Get Involved. People in areas where implementation is scheduled can join the local steering committee to help shape and guide the process.

Whenever there is a conversation about treatment barriers or challenges, talk about the effects of stigma. Whenever there is a conversation about stigma, talk about the PLHIV Stigma Index. Make sure people know that there are interventions that work to reduce stigma and that people living with HIV, together with our community allies, are leading many of these interventions.

Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.