A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 2

View Part 1 of this Interview...

SAN: What are the biggest lessons learned from the Index thus far?

Laurel: Something I didn’t realize until I started working with this data is the existing level of internalized stigma and discrimination and how that impacts people’s behaviors in ways that can really limit our health and well-being. In some countries the percentages of people who have considered suicide in just in the past year because of their HIV status is heartbreakingly high.

The percentages of people across most, if not all, of the sites I have seen who have avoided getting health care when they needed it because they were afraid of being discriminated against are, again, really high. I think this really speaks to the challenges for people living with HIV just to have a healthy life with dignity. Even when health care was formally available, people still avoid it because of the risk of mistreatment. That has hit me hard.

SAN: What are the biggest barriers and issues the Index has identified that serve to perpetuate stigma against people living with HIV?

Laurel: We asked people in the survey questions about their perceptions regarding why HIV stigma and discrimination occurs. The responses are interesting to me because a lot of people say it is just basic ignorance about the facts of transmission. This is a sad statement given that there has been so much education over the past 1-2 decades globally. It may be the situation that people know the facts but don’t really believe them and so they are still afraid of people living with HIV and see us as a real threat to their health when we are actually not.

In terms of the common locations where people report that they face discrimination, I would say that healthcare settings are the center of HIV discrimination for a lot of people. It is not that health care workers are necessarily more discriminatory than anyone else, instead,  they are the people who are most likely to know someone’s HIV status -- which puts them in a position where they can discriminate. However, when we ask respondents to tell us what groups have been supportive or discriminatory towards them, a significant portion of respondents identify healthcare workers as the most supportive people with whom they  come in contact. I think part of the challenge for people living with HIV is that you don’t know when you go to see a new healthcare worker whether you are going to be treated badly or not. There are providers who refuse to see you, to touch you, to provide the services you need, or who question you inappropriately. On the other hand, within the healthcare field, there are these really committed people who provide healthcare for people living with HIV, who I know in many cases are a lifeline for their patients.

SAN: What do you think the greatest benefit of the Stigma Index will be?
Laurel: What I would add to the things that we have already touched on, would be the opportunity for increased solidarity among people living with HIV and our allies and advocates in the HIV field. We don’t always get to hear each other’s stories and understand how stigma affects people within our own community. It gives us the real opportunity to collaborate across communities.

In addition to that, at the end of this we will have people living with HIV across the country who received additional job training through employment and involvement in the Stigma Index project. They will have gained project management, advocacy, organizational, research and data skills. Hopefully, these skills will be combined  with a sense of self-empowerment and of commitment to the full community of positive people so that we can come together  as people with HIV, and we can make a difference that improves the lives and well-being of all of us – particularly those living with HIV who are the most vulnerable to the multiple challenges from poverty, racism, homophobia, transphobia, misogyny, etc. that limit people’s ability to access the services they need to live healthy and full lives.

SAN: How can members of the SAN get involved?

Laurel: I would like anyone in the SAN who is interested to be involved. We are putting together an academic advisory council of people who can provide any amount of time they have, according to their own schedule, to weigh in on different questions, results, and the implementation.

If people contact me and let me know what they are interested in, then I can bring them in. This is a collaborative process so the more brains, hearts, and hands we have involved there better. 

A big thank you to Laurel for a very interesting and informative interview! If you would like to contact her about the Stigma Index please email coordination@gnpna.org.

Furthermore check out another interview she did along with Eric Sawyer for AIDS.gov after their PACHA presentation on the Stigma Index to learn more about this awesome project!

View Part 1 of this Interview

A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 1

Laurel Sprague is the regional coordinator of the North American affiliate of the Global Network of People Living with HIV (GNP+NA) and is herself living with HIV. She has provided technical assistance globally on the development and implementation of the PLHIV Stigma Index since 2009 and is leading the U.S. implementation. Furthermore, she teaches in the Department of Political Science at Eastern Michigan University. She’s a great advocate and has extensive expertise in survey research.

SAN: For readers who aren't familiar with it, what is the PLHIV Stigma Index?   

Laurel: PLHIV Stigma Index, or The Stigma Index, is a research action tool for communities living with HIV to be able to document our lived experiences of HIV-related stigma and discrimination, and to then use the results as evidence for advocacy work on our own behalf.

SAN: How did the People Living With HIV Stigma Index get started?

Laurel: The Stigma Index was created by four founding international partners: UNAIDS, Global Network of People Living with AIDS (GNP+), the International Planned Parenthood Foundation (IPPF), and the International Community of Women Living with HIV (ICW). Those organizations worked with existing surveys and with networks of people living with HIV to put together the questionnaire and the process. The idea was to be able to gather data and empower people living with HIV to manage the process and to use the data for evidence based advocacy.

SAN: How does the Index work? How are you using it to measure stigma?

Laurel: We measure the experience of stigma and discrimination from the perspectives of people living with HIV. The Stigma Index accomplishes this by training people living with HIV as interviewers who then interview other people living with HIV. This allows people living with HIV to talk openly, honestly, and safely – because they are talking only with other people living with HIV - about how stigma and discrimination has affected their lives. Additionally it looks at a comprehensive life picture of a person living with HIV by taking into account how their membership in other identity groups that face discrimination may intersect to create different forms of stigma and discrimination as well as at what people living with HIV can teach others about sources of support, resilience, coping, and self-efficacy.

SAN: Where has the Stigma Index been rolled out so far?

Laurel: It’s been implemented in more than 45 countries. It’s been implemented in every region of the world but never within the U.S. or Canada until now.* We are currently engaged in early discussions with PLHIV, AIDS service organizations,  and collaborative research institutions in Canada about the prospect of an implementation there.

SAN: How successful has the S.I. been so far? 

Laurel: That is an interesting question because what immediately comes to mind are two different kinds of success. There is success in gathering solid information across communities of people living with HIV—and some countries have been more successful than others in being truly inclusive of the diversity of all our communities. Ukraine is an example of a country that did an excellent job involving people from all key populations across the country. They have something that many of us look at as a model stratified sampling process that they used to identify which populations needed to be involved and then how to recruit them.

The other way I would categorize success would be by looking at what the advocacy outcomes have been and the self-empowerment for the people living with HIV. For example, when the Estonia Network for people living with HIV looked at their research results, one of the areas that they saw was a huge issue was the effects of HIV on employment discrimination. They initiated a project to educate employers in Estonia and to encourage them, first, to not discriminate based on HIV status and, second, to openly recruit people living with HIV for positions. They were successful in creating a network of employers who have committed to non-discrimination and who post publicly within their buildings that they do not discriminate against people living with HIV.

Check out Part 2 of this Interview!

*Please note that the North American Region in this context is considered to only include the USA and Canada

Employment: An Emerging Strategy in HIV/AIDS Treatment and Prevention?

By Mark Misrok, MS Ed, CRC, President, Board of Directors, National Working Positive Coalition

Since the epidemic’s emergence in 1981, the employment-related issues, needs and opportunities of people living with HIV/AIDS (PLWHA) have greatly evolved. Public policy, understanding and service system response have struggled to keep pace, but a recent quickening of employment initiative development is unleashing new optimism.

For many, the overwhelming phenomenon of the first 15 years was people disconnecting from work, going on disability benefits, and dying shockingly soon.

As news emerged in 1996 about new, effective combination drug therapy, the landscape was beginning to change, even for the very sick.

People who had left work, leaving vocational identity and career goals fading in the rear view mirror, unexpectedly faced wanting or needing to go back to work. Some PLWHA were seeking to establish work lives and careers for the first time.

Many had experienced great change in physical capacity and in what they wanted and needed from a job. Many lacked or had outdated skills and qualifications. PLWHA and service providers struggled to understand what happens to people’s disability benefits when they went to work. Many people had personal debt, tax, or legal issues.

Fear of HIV stigma, disclosure and discrimination also influenced many to avoid change. While confronting all of these challenges, PLWHA still had to find ways to build a new life.

With help from pioneers from the HIV/AIDS, vocational rehabilitation and workforce development communities, pathways to employment for PLWHA slowly began—and can continue—to develop. The definition of success in this era of HIV/AIDS would go beyond successful treatment of HIV.

Awareness began to develop of the poverty, social isolation, and blocked vocational development of thousands of Americans living with HIV/AIDS. Excitement built for a more hopeful era of a large-scale transition to work movement among PLWHA. At the same time, others were terrified of the risks for disabled PLWHA attempting a transition to work without:

• evidence of sustained benefits from medications
• manageable side effects
• continued access to medical care and treatments
• support services that brought them the stability to consider employment
• a system of vocational services prepared to assist them effectively

Many service providers initially hesitated to adopt a recovery model for HIV/AIDS services, which would include encouragement to consider goals, including employment and vocational rehabilitation.

The movement emphasizing employment began with MTS and Housing Works in New York, Positive Resource Center in San Francisco, Whitman-Walker Health in DC, and AIDS Project Los Angeles, and continued with the National Working Positive Coalition and several community-based initiatives around the country. Building on the release in 2010 of the first-ever National HIV/AIDS Strategy, the Department of Labor’s Office of Disability Employment Policy has led at the federal level, with the key role of employment recognized among social determinants of health. Pioneering initiatives also emerged from the Department of Housing and Urban Development’s Office of HIV/AIDS Housing. The Department of Justice and Equal Employment Opportunity Commission emphasize and enforce workplace protections under the Americans with Disabilities Amendments Act.

In a 2008 national survey of more than 2500 PLWHA by Dr. Liza Conyers of Pennsylvania State University, a significant percentage of employed respondents reported positive health outcomes and reduced risk behaviors after transitions to work.

New initiatives and coordination of existing resources are increasingly cause for optimism. If information, resources and supports were available, many PLWHA could better equip themselves to make well-informed decisions about employment. Potentially many could succeed in transitions to work.

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“The first fifteen years of the epidemic were about dying—first quickly, then a little more slowly, but it was all about dying.

The next five years were about not dying.

It’s my hope and belief that this next era of the HIV/AIDS epidemic is about living, really learning to live fully, with HIV.” 

2004

Eric Ciasullo, founding board member, National Working Positive Coalition