Stigma, HIV and Sexual Health in India: A Peer Educator's Perspective

The Government of India estimates that about 2.40 million Indians are living with HIV, with children (<15) accounting for 3.5% of all infections. In addition, 39% of the total number of people living with HIV are women. As such, stigma and discrimination towards those living with HIV is widespread. 

Nevertheless, there are numerous organizations that are working tirelessly to combat the general lack of information about HIV, as well as the rampant stigma that is associated with it. One such organization is The YP Foundation, who through their Know Your Body, Know Your Rights (KYBKYR) division is seeking to dispel myths and misunderstandings about HIV and sexual health among young people in India. 

What follows is an interview on stigma, HIV and sexual health in India with Sukhmani Kaur, Peer Educator at the Know Your Body, Know Your Rights division of The YP Foundation. In her time as a Peer Educator, Sukhmani has held workshops on comprehensive sexual health & reproductive rights, and HIV/AIDS with over a 100 girls and young women across India.  

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SAN: How does the Know Your Body, Know Your Rights program of The YP Foundation seek to address issues of stigma and discrimination among young people in India?

Sukhmani: The Know Your Body, Know Your Rights branch of The YP Foundation is a youth-led program which provides young people with an opportunity to enhance their knowledge and skills in the fields of health, gender, education, sexuality and human rights. It enables them to create, strengthen and promote new policies and programs by building leadership, with a special focus on peer education.

The peer educators are trained thoroughly on sexuality education and motivated to broaden their perspectives by addressing the various issues of stigma and discrimination at the national and international level. They are encouraged to think about the various possible solutions to the problems that dominate the sphere of sexuality, gender and health. The role of the peer educator extends to spreading awareness and imparting knowledge among other young people about stigma, and to also shed light on the common issues of discrimination with a set of coping strategies, through various workshops and advocacy programs.

SAN: What role do you think the persistence of stigma plays in the continuing prevalence of HIV and AIDS in India?

Sukhmani: The stigma attached to HIV and AIDS exists in a variety of ways, including shunning, discrimination and avoidance of those living with HIV. Stigma-related violence can prevent many people from seeking HIV testing, which could ultimately perpetuate the spread of HIV. Many people fear the absence of confidentiality and are consequently unable to disclose their HIV status.

Fear of rejection and violence also prevents people from seeing a doctor and seeking a secured treatment. Also, the widespread perceived association of AIDS with homosexuality, prostitution and drug abuse, which are already stigmatized in Indian society, has generated intense fear and resentment among the population at large. At a policy level, the stigma associated with HIV can deter the government from taking fast, effective action against HIV and AIDS. Thus, stigma is an important barrier to public action, making AIDS the silent killer. 

SAN: Do you think there is a strong correlation between the absence of testing services, lack of general information and the existence of taboos and stigma?

Sukhmani: Yes, undoubtedly there is a strong correlation between the absence of testing services, lack of general information and the existence of stigma and taboos. In health care settings, people living with HIV can experience stigma and discrimination such as being refused medicines or access to health facilities, receiving HIV testing without consent, and a lack of confidentiality. Many people do not get to choose to who, when and how to disclose their HIV status.

In the workplace, people living with HIV may suffer stigma from their co-workers, in the form of social isolation, or discriminatory practices such as termination of employment. Fear of an employer's reaction can also cause anxiety to a person living with HIV.

Despite the best efforts of civil society organizations, in India a large proportion of the population is still unaware of the distinction between HIV and AIDS, where the two terms are used as synonyms. This can arguably be one of the major causes for the generation of various myths surrounding HIV and AIDS. Also, a considerable number of people do not have adequate access to clean and secure health facilities, condoms and ART therapies. Because of the lack of general information, many are not aware of the modes of transmission and prevention, and therefore associate irrelevant actions, such as holding hands, kissing and hugging to HIV transmission.

SAN: How do you view the efforts of the government of India with regard to addressing issues of stigma and Discrimination?

Sukhmani: HIV and AIDS are major causes of concern for the Government of India. The government's major AIDS control initiative is the National AIDS Control Program and the premiere AIDS agency is the National AIDS Control Organization (NACO). The organization attempts to provide a dignified support to all the people living with HIV, as well as access to quality health care.

With sustained effort, the government has been successful in reducing HIV transmission through blood transfusion by ensuring the availability and safety of blood in blood banks. Mother to child transmission of HIV has also been reduced considerably by providing access to various testing services and experienced counseling. With the effective use of media, the government has also attempted to impart knowledge about the various modes of transmission and prevention. Condoms have also been made cheaper and easily available in some areas, which has also helped in the reduction of other sexually transmitted diseases.

However, to reduce the stigma and discrimination that surrounds HIV and AIDS, the government needs to redirect its focus on comprehensive sexuality education. All adolescents and adults should have access to sex education. People should also be provided detailed information about the various modes of transmission of HIV, and ways to prevent it, so as to dispel myths that surround HIV and AIDS. The stigma around the use of condoms should be eliminated for its effective usage. Also, it is imperative to completely eliminate stigma related violence in workplaces and health care centers. By improving the implementation of the policies undertaken by the various centers at the state level, the government could also make the access to testing services and medicinal drugs affordable and convenient.

SAN: In your work, have you seen a reduction in the stigma associated with HIV, especially among young people?

Sukhmani: The Know Your Body Know Your Rights Program of The YP Foundation creates and advances platforms for young people to advocate with decision makers for Comprehensive Sexuality Education. With a special focus on the rights-based approach, the program has been successful in reducing stigma associated with HIV and AIDS in the locations that it has worked in. In addition to providing detailed and accurate information about HIV, KYBKYR also attempts to eliminate the myths and misconceptions surrounding it. Other key objectives include sensitizing people about all forms of violence and discrimination, increasing access to quality health care, educating the youth and inculcating value education and clarification.

KYBKYR has also been successful in strengthening youth led initiatives and movements and advancing young people's human rights by building leadership. Various taboos and issues of discrimination are carefully addressed with accurate coping methods and strategies. Realizing the importance of educating people about HIV and AIDS, more and more young people have been targeted for spreading awareness about its causes, prevention and treatment. Also, it is important to realize that AIDS is not 'someone else's problem'. It is an issue that everyone should fight for, so as to completely eliminate all the myths and misconceptions and treat those living with HIV with dignity and respect. 

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To learn more about the Know Your Body, Know Your Rights Campaign check out their facebook page and their website. 

To learn more about The YP Foundation visit their facebook page and their website

Supporting Social Change to Curb Violence and Eliminate HIV in Guyana, by Anne Stangl of ICRW

By Anne Stangl

*This blog originally appeared on ICRW

As I fly home from the humid, vibrant and bustling Georgetown, the capital city of Guyana, I am a bit overwhelmed by the daunting task the country faces to address the high levels of intimate partner violence, sexual assault, child abuse and suicide in the country.

Over the last week, my colleague Jocelyn Lehrer and I had the privilege of speaking with people working at community-based organizations throughout the country who are an integral part of tackling these challenges. Peer educators, social workers, nurses, counselors, people living with HIV, LGBT advocates, and survivors of violence all took time from their important work to speak with us about their efforts to create a path forward for Guyana.

My visit to the South American nation was the kick-off trip for ICRW’s grant work under Advancing Partners & Communities (APC), a USAID funded project, implemented by JSI Research & Training Institute, Inc., in partnership with FHI 360. ICRW is assisting in the implementation of the project in Guyana over the next three years, helping to strengthen the capacity of local organizations in Guyana to provide HIV prevention, care and treatment services to key populations at heightened risk of HIV infection, including women, men who have sex with men, transgender individuals and sex workers. Reaching these populations is critical for eliminating new HIV infections in Guyana, but extremely challenging, as these groups face high levels of stigma, discrimination and violence in society.

Given mounting global evidence that sexual assault and partner violence are directly linked with HIV infection, it is crucial for Guyana to tackle these key drivers of the HIV epidemic head-on.

During the trip, I learned of the great work these organizations and individuals are doing to support survivors of gender-based violence and to ultimately break the cycle of violence so that no woman or girl has to experience it in her daily life. From training police to be gender- and LGBT-sensitive, to supporting abused women, men and transgendered individuals in accessing justice, to sheltering women and children when their homes are unsafe, I could see firsthand that change is coming to communities in Guyana.

And while these conversations gave me great insight into the powerful individuals working to reduce violence in Guyana, I did see something worrying.

In interview after interview, themes began to emerge: Gender-based violence is pervasive. Services for survivors are limited or very difficult to access. Marginalized populations such as men who have sex with men, transgendered individuals and sex workers are at heightened risk of experiencing violence. Resources are limited for carrying out community- and national-level programs to change harmful gender norms and break the cycle of violence.

The stories shared by these frontline workers were reinforced daily by headlines in the local newspaper: a police officer charged with sexually assaulting a young man with a wooden police baton; a 23 year old who murdered his 14-year-old girlfriend and then hung himself. 

Despite these challenges and the ubiquitous headlines, I am cautiously optimistic about what we can accomplish.

On our final evening in Georgetown - the country’s largest urban center- we attended a production of “Before Her Parting” at the National Cultural Center. The play was written by Mosa Mathifa Telford, directed by Tivia Collins and staged by Merundoi Incorporated - a community-based organization that utilizes entertainment to educate the public, affect individuals’ attitudes and behaviors, and shift social norms. The gripping drama portrays a reality that’s all too common in Guyana in which young woman is murdered by her husband, who then kills himself. The plot could have been ripped straight from recent headlines.

The play also explores the intergenerational cycle of abuse that fosters violence generation after generation in Guyanese society: A woman is abused by her husband and is violent toward her son; her son grows up to beat and ultimately murder his wife, and the cycle continues. The play was followed by a facilitated discussion with the more than 400 audience members, ranging from students to teachers to civil servants, and a panel of speakers from various government institutions. It was heartening to hear these young Guyanese demand both action to reduce violence and expanded services to support survivors.

It is my hope that though USAID’s Advancing Partners and Communities Initiative, ICRW and John Snow International will be able to strengthen the capacity of local organizations so they are better equipped to respond to gender-based violence in Guyana and can continue to facilitate social norm changes to reduce violence and reduce the spread of HIV infection.

Above all, from my time in Guyana, I saw hope and determination. Hope that the next generation will not see the type of endemic violence that has pervaded Guyana for decades, and be determined to tackle these problems head-on. It’s important that those of us in the global community echo that hope and determination, too. We need to ensure that community workers and advocates have the tools to end these human rights violations as well as to empower women and girls to live free from fear of violence or abuse.

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Thank you to Anne for allowing us to share this post. If you would like to know more about what Anne does at ICRW, check out her twitter feed.

A Conversation with Christopher Barnhill for National Black HIV/AIDS Awareness Day

Award-winning HIV/AIDS activist, philanthropist and motivational speaker, Christopher Barnhill is changing the face of activism. At the age of 16, Christopher discovered that he was infected at birth with HIV. This motivated him to dedicate his life’s mission to promote HIV/AIDS and personal awareness. Christopher has spent the last 10 years speaking publicly to audiences of 100 to 10,000 about the impact and responsibility of being positive. He is also the founder and executive director of The Emily Foundation, which helps young people in Washington, DC, who have lost parents to HIV/AIDS or drug-related issues. 

To learn more about Christopher, read his full bio or visit his website.

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SAN: What made you want to get involved in HIV activism?

Christopher: It started out when I was 16, I discovered my own status of being positive and it changed – snowballed – and then the avalanche was there. I started out educating my high school about HIV. My health teacher would get permission from my other teachers to pull me out of class so I could educate her class because I was known as ‘the expert’ at school. So that is really what started it. But the purpose of me getting heavily involved was because I didn't want to run into any people my age finding out they were HIV positive, so I wanted to do everything I could in my power to educate them and to prevent them from contracting HIV.

SAN: Can you talk to our readers about the stigma surrounding HIV that exists in the African American community?

Christopher: Oh, well, there’s definitely a lot of stigma in the community. Historically, African Americans are very private with things, especially around health and health-related issues. It’s been passed down from generation to generation and what we’re starting to see is the effect of what stigma can do. You have people who live in a certain part of town going to the other side of town to get HIV tests and HIV services; because you have the stigma of someone finding out that you’re HIV positive by being associated with the organization that provides HIV testing. 

Stigma has definitely played out for me personally. There were people who didn't want to associate with me because I was positive. But the question is why do we allow stigma into our lives? Why do we allow stigma to run our lives to the point that we’re dying? And those are the questions that I just can’t answer.

SAN: If you’re comfortable talking about it, do you have any examples of times when you may have witnessed HIV-related stigmas or discrimination, or had personal experiences with HIV stigma?

Christopher: Oh yeah. The first time I told my high school about being positive, I was threatened with suspension for that because I did it over the announcements for World AIDS Day. The principal didn’t give me permission to share that, and also teachers were different towards me afterwards. But the second form of stigma I experienced is when I was dating someone who was HIV negative and he broke up with me because he thought I was just too open, too public about my status. He didn’t want to be involved with me because he thought it would make other people think he was [HIV] positive as well. So stigma plays out right in your face sometimes, but stigma can play out in the blind spots as well.

SAN: Do those stigmas play out differently when gender or sexuality is involved?

Christopher: Well, I've never been a black woman, so I really can’t speak for them. I would say yes, stigmas play out differently for black women and black gay men. But I do know that stigmas play out differently if you’re living with HIV and are a black heterosexual man, because not a lot of the services are geared towards black men who identify as heterosexual. They’re often afraid of being a part of anything that involves services because they’re afraid they might be associated as gay. For example, there may be a support group for black men living with HIV, but most of them will be gay. As a result, heterosexual black men don’t feel like there’s a space just for them to talk about their experiences with being straight and positive.

SAN: As it is it’s National Black HIV/AIDS Awareness Day on Friday, we would like to ask how you got involved with National Black AIDS Day and what work have you done with them to talk about HIV in the African American Community and the diaspora?

Christopher: Well, every day is National Black HIV/AIDS Awareness Day and World AIDS Day for me, so I think being part of the organization has allowed our work to be a little broader. I’ve done a lot of interviews, educated the community on HIV and AIDS and how it specifically affects black people. I also was able to assist with event attendance and organization. I actually got connected three years ago and since then I’ve become one of their spokespeople. I really appreciate what they are doing to ensure that this information is continuously being put out on the surface. If this continues I hope we can lower the rate of HIV.

SAN: What can allies do to better spread awareness about HIV and HIV stigma, for both NBHAAD and going forward?

Christopher: Well they can always:

1. Go to www.nationalblackaidsday.org and start sharing the statistics that are there and signing up to volunteer for events that may be happening in their area.
2. Show support for others who they know are living with HIV they can start being there for them more, and it doesn’t have to be ‘have you taken your meds’, but what it can be is something as simple as being a shoulder to cry on or just being a listening ear.
3. I know there are a lot of people who want to help and there are a lot of organizations that need help, like Us Helping Us, BlairUnderwood Health Clinic, Women’s Collective, Sasha Bruce, and Whitman-Walker. There are so many nonprofits in the DC area that are specifically providing HIV related services, and if you work with an organization that does not have health services talk to them and see what they might be inclined to do to support their clients who are living with HIV.
4. As far as college students, get your Masters in Public Health and focus on chronic disease, and just continuously be on the front line of the work.
5. And I know that National Youth HIV& AIDS Awareness Day coming up in April, so start signing up for events in your area!

There are a lot of things you can do. You've just got to do them!

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A big thank you to Christopher for his interview. If you would like to stay connected to him, you can follow him on Twitter @Pozlyfe, or subscribe to his website.

The SAN is so excited to be partnering with #StigmaWarriors like Christopher and the National Black AIDS Day team for National Black HIV/AIDS Awareness Day, coming up this Friday, February 7th! Check out our FB and Twitter pages for more information about the unique stigma and discrimination the black community faces and how you can help reduce it!

For more information about what you can do to help those living with HIV, or to volunteer with organizations in the Washington, DC area which serve those living with HIV, please go to:

• National Black Aids Day: www.nationalblackaidsday.org
• Youth AIDS Day: http://amplifyyourvoice.org/nyhaad
• Us Helping Us: http://www.uhupil.org/
• Blair Underwood Health Clinic: http://www.aidshealth.org/
• Women’s Collective: http://www.womenscollective.org/
• Sasha Bruce: http://sashabruce.org/
• Whitman-Walker: https://www.whitman-walker.org/

Why Peer Education Works: A Success Story From Western Michigan University

Knowledge is power, especially when it comes to sexual health. The distribution of correct medical information is essential in reducing HIV transmission, dismantling stigma, and ending discrimination. In the war against HIV/AIDS, education is the best ammunition. Progressive universities around the nation recognize this secret weapon and have developed programs designed to equip their students with the tools necessary to make well informed decisions.

Ranked number 11 in the country, Western Michigan University’s sexual health program stands out among the rest! Here’s why…

WMU employs a unique and highly effective teaching tool: peer education. Think back to the last time you had to relay the all-too-personal details of your love life to a medical professional. Not too comfortable was it? Students at Western Michigan University don’t have to worry about that! They have the opportunity to go their peers with sexual health concerns before consulting a doctor. 

Anthony Spychalski promoting condom use!

Anthony Spychalski, a current peer educator and bona fide "sexpert" at Western Michigan, answers a few of our questions about his experiences with this unique teaching strategy:

1. What inspired you to become a peer educator?

I remember one night during my freshman year when my two friends were helping a friend of theirs who had been raped. They were so knowledgeable on where to find help and took their certification so seriously. I just remember they kept saying, “We’re peer educators.” After that night I took it upon myself to get involved. I wanted to help like my friends did, I wanted to have resources like they did, and I wanted to be a part of making our community a better place. I love sex, hate how it’s such a “taboo” topic, and want to go and tell everyone that it’s a normal natural part of being a human being. On top of that, I’m going to inform you about every STI, symptom’s, ways of contraction, protection and barrier methods, and overall ways to not only protect yourself but also as many sexual partners as you choose to have.

2) Do you find that a lot of students are the victims of misinformation? What are some of the biggest “myths”circulating on your campus?

OH YES!! Students are huge victims of misinformation! It is one of our big goals as peer educators to eliminate these myths. Some reoccurring ones we constantly hear include:

• During sex, if the girl is on top, she won’t get pregnant.
• If you have sex in a hot tub, she won’t get pregnant.
• Sex in front of a microwave kills sperm.
• Douching with vodka skills sperm. (Do not attempt!)
• If the girl is on her period she won’t get pregnant.

These are all FALSE! Please, if you hear myths like this, do not pass it on, and check your sources before passing on any medical information.

3) Here at the Stigma Action Network, we focus a great deal on stigma and discrimination surrounding HIV. Do you deal with students who hold stigmatizing opinions about HIV and other STDs?

 During the time when Peer Educators are presenting STI information, it is very common to see scared, nervous, or even grossed out expressions in the crowd.  I believe the biggest fears students have is that they may have caught an STI and not know it, seeing as lot of the time symptoms are asymptomatic. We explain and stress the importance of getting tested every 3 months for this reason. I believe once the student has been informed of the risks with STI's and HIV, they are equally concerned with the health risks and social implications. With the contraction of an STI, especially a viral infection that is not curable (Genital Herpes for example), comes the social stigmatism that students fear. We stress as peer educators that regardless of what you have contracted, you can still live a completely happy and normal life.

4) Do you think students are more receptive to information if it is provided by one of their peers?

I think students are MUCH more receptive to information if it is provided by one of their peers or someone that is their same age. Having a stranger come into a large room and pull out condoms, talk about penis and vagina, and how easily they can become infected is not something people are very comfortable with (unfortunately). With us, it’s a much more fluid and laid-back conversation instead of a bunch of questions and statements about your medical history. This makes the short relationship much more cozy, so to say. Students don’t seem to be as afraid to tell me things they would normally be more fearful to tell their doctors. I’m simply there to offer advice, provide resources, and contact professionals more certified then myself if wanted, or in the extreme circumstance, needed.

Want more information on WMU's peer education program?

Check out their website!

An exclusive from Josh Robbins of imstilljosh.com

Breaking news from Josh Robbins of imstilljosh.com!

In our interview on June 17^th, 2013, Josh revealed the next incredible contribution he is making to the community of people living with HIV. He is going to be creating an I’m Still Josh (ISJ) HIV phone/tablet app!

“I have looked at all the HIV apps on the market and while they all have their own individual amazingness, there is no particular one that I would go ‘hell yeah this is the HIV app for those of us living with HIV,’” said Josh, when explaining his desire to create his own app.

Josh’s goal is to make an HIV app that will be truly useful for people living with HIV.

Some of his ideas for an ISJ HIV app include a:

• Discrete icon: it would be hidden behind what looks like a camera application so the icon doesn’t, according to Josh, “scream HIV”
• Password: so no one but the user can access the user’s personal information
• Health newsfeed: with the latest HIV research and information. The newsfeed will be interactive and not promote any one individual health product or pharmaceutical organization.
• HIV data tracker: This will track information  such as a user’s CD4 count, viral load, etc.  All data will be able to be translated into a graph or table.
• But wait there’s more! Furthermore, users will be able to send this data to their computer, email, or wherever they want in the event they want it for their records or to share with a physician. As with all other aspects of the app, there will be no identifying information on these files to connect it back to the user.

Sound interesting? Is there something you would like to see on the ISJ HIV app? Josh would love to get your feedback on what you think would be an important feature to include! If you have a great idea (and if you are part of our SAN community, we are certain you do!) contact Josh!

In order to make this app a reality, Josh is currently in the process of raising $3,000. If you would like to make a contribution click here!

The SAN looks forward to seeing this awesome new application from Josh and ISJ! We are certain it will have as big an impact in the community of advocates and people living with HIV as Josh himself has!

A big, big thank you to Josh for an amazing interview! Be sure to check out the blog post or the podcast if you haven’t already! And to learn more about Josh and his amazing work visit his website, Facebook, and Twitter!

An Interview with "Stigma Warrior," Josh, from imstilljosh.com

Josh Robbins learned on Jan. 24, 2012 that he was HIV positive. He “decided to make a blog because [his] new circumstance of being newly poz [wasn’t his] death sentence… or even close to what defines [HIM] as Josh.” His blog has gone on to inspire many allies and people living with HIV, and he continues to a strong figure in stopping the spread of stigma.

Visit imstilljosh.com to learn more about this incredible individual!

Listen to the podcast of this interview! 

SAN:  You have been running your blog for about a year and a half now—what has been one of the most memorable moments or learning experiences?

Josh: When I started the blog, I didn’t know what it was or would be—and I still feel that way sometimes. Through this medium, I am just sharing my experiences and journey and what it has been like for me to live with something day-to-day, month-to-month, and now over a year that I was completely scared of as a gay man.

With that said, it has been a process of seeing this platform grow and handling the unexpected responsibility that comes with it. I have been surprised with the amount of people who engage with me through I'm Still Josh (ISJ). Almost every day someone contacts me and shares their very personal stories which I am honored and humbled to hear. That has really been the biggest thing from imstilljosh.com and so I feel partly a responsibility to respond to those people for sharing that. I want to thank them for investing their time and for hearing about my continuous journey.

SAN: What do you think your impact has been in terms of stigma reduction?

Josh: What I found is that we have these digital stigma warriors (and I like to include myself in that) who are changing the way people think about HIV. There are different ways of understanding HIV, for example: as an HIV negative person who thinks HIV is the worst thing that could happen to you and living in fear of it; and then as an individual who is diagnosed and realizes it is not a death sentence and you can still be you. Closing those mental barriers and taking down those walls --it requires talk from people and organizations like ours to do this. That is what I feel like I am a part of and what I have committed to thus far.

I believe that if we catch people who are recently diagnosed and we catch them early enough and encourage the hell out of them then we have the ability to change them from being victims to heroic stigma warriors who educate the community about what HIV is, how to prevent it, and how to live alongside people like us. That encouragement period of time is so important to me and that is what I have concentrated the most on. That part of my life has the most success. It is something I am very passionate about.

SAN: Well I saw you started an encouragement wall on Facebook, so that is a very concrete way that you are digitally supporting people.

Josh: Yes! And I haven’t officially launched it yet—but my goal is for it to be the largest digital encouragement wall for those recently living with HIV. What I am doing is getting quotes from different significant people to influence how those who are recently living with HIV feel about themselves.

The idea actually came from the AIDS Quilt. It is so big and people are constantly adding to it, and that’s what I hope to see from the Encouragement Wall on ISJ. Eventually users will be able to come to the site and make their own and have their work immediately added to the wall. I am excited to see how it develops with people’s different words, pictures, and forms of expression.

“If you don’t talk about HIV, and you don’t 

talk about those elements that turn 

into stigma—how can you ever 

combat it and end it?”

SAN: That sounds great! Us too! What do you think the most effective way for people to reduce stigma is (aka be a #StigmaWarrior)?

Josh: I think that HIV needs to become real to individuals and their networks by talking about it in a very personal way. It requires a bit of trust and vulnerability from people--like myself--who are living with HIV. Furthermore, it is equally as important for people to stand up as allies to and speak out for the community of people living with HIV.

The whole reason I got involved with this was because I went to a group therapy session for people living with HIV in Nashville. Everyone seemed to have an attitude of defeat.

They told me: “Josh, you just don’t understand what it is like to hear these words, for people to not want to date you because of this virus.”

My response was: “If you don’t talk about HIV, and you don’t talk about those elements that turn into stigma—how can you ever combat it and end it?”

For me that was an epiphany --when I left and I refused to shut up. From that, I have really learned to and convinced myself that I am going to be ok, all of which has really reduced my internal stress as well as helped my health and impacted my view on HIV.

SAN: Very true. Well, those are all my questions. Thank you again so much for taking the time to do this interview. It has been a real pleasure.

Josh: Same here, but before we go I want to tell you something… 

Check out the exclusive story Josh gave the SAN!  

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