Building a Cape: Reflections on the Whitman-Walker Walk to End HIV

By Sara Doverspike

Superman was one of my favorite superheroes while I was growing up. The guy had it all; the traditional charm of a small town boy, the strength of whatever the storyline requires of him, and a humanitarian heart as big as his abdominal muscles. But what I admired most about Superman was how he utilized his super-human powers, especially the ability to fly. Flight in Superman’s context is associated with courage—to do what is right, to actively fight for social justice. To put on a cape and fly makes one visible as a hero, it takes away the comfortability of the status quo, and encourages one to act in a way that makes them great. That makes them super.

I made a cape for this year’s annual Whitman-Walker sponsored Heroes Walk to End HIV in DC. It was a child-sized, Amazon-purchased piece of synthetic material that had a WordArt designed “superhero” logo package-taped to the back. It wasn’t particularly comfortable to wear, or something that Marvel would invest in to be sported by the next big hero. I was afraid that it wouldn’t be significant.

The Whitman-Walker Health clinic has a rich history serving the greater Washington, DC area since 1973, and has been committed to the “highest quality, culturally competent” healthcare for all individuals in the community, with their particular expertise in LGBT and HIV care. This year marked the 29^th annual Walk to End HIV, featuring a superhero themed fundraising walk and 5K to benefit Whitman-Walker and their commitment to comprehensive and accessible healthcare to those affected by HIV/AIDS. According to the CDC , more than 1.2 million people in the United States are living with HIV, and about 1 in 8 people are unaware of their status. The lack of knowledge and testing can largely be attributed to the stigma and discrimination attached to individuals living with HIV, from how it is transmitted to the presumptions of the lives of the people that HIV effects.

When I arrived at the walk, I was overwhelmed by all of the capes being flown. They were all different kinds of fabric and sizes, some were plain or multicolored, some had original logos, and some came with a full super suit complete with pleather boots. And then some came in the form of words of encouragement and personal stories about HIV has affected their lives. Some capes were the dance moves of a group of strangers with the help of the pre-walk warm up DJ. Some people put on their capes when they asked someone for help, or advice about their status, or for a picture with some of their HIV positive role models. And some capes were silently present in solidarity, immersed in the atmosphere of a community dedicated to proving that no cape had to fly alone. Every person had put on a cape; every person had become significantly super.

When the walk began, hundreds of people consumed the streets of downtown DC and all the capes weaved themselves together to create a colorful and beautiful display of support for their friends, family, people they haven’t met or would never meet, the people standing next to them, and themselves. Together we flew through the streets, past the iconic Washington monument and stopped all the cars and passerby in their tracks (who I would presume were asking themselves the classic question of whether we were birds or planes). The Superman I had loved long ago seemed less tangible and more fictional than ever before, as I knew I was among the heroes who have fought their battles without super strength or the ability to flee to the sky when problems on the ground are tough. These are the people that walk among us and achieved greatness through their courage in the everyday. They’ve had capes on all along, even when I hadn’t noticed.

After the walk, I tucked my synthetic cape neatly away in the closet. I haven’t taken it out since; but every now and again, when I’m reminded, I feel its presence.

Resources

To learn more about Whitman-Walker and the Walk to End HIV:

https://www.whitman-walker.org/

http://www.aidswalkwashington.org/index.cfm?fuseaction=donorDrive.event&eventID=505

To find the closest testing center:

https://locator.aids.gov/

To find a testing center and knowledge about testing/your status:

http://www.cdc.gov/hiv/testing/

http://www.buzzfeed.com/caseygueren/get-tested#.qiQXMRvaa

Know you are not alone! There are plenty of resources available to connect friends living with HIV, such as this encouragement wall:

http://www.imstilljosh.com/encouragement-for-newly-hiv-infected/

You are strong. You are loved. You are super!

Sara Doverspike is a Stigma, Discrimination, and Gender Intern at the International Center for Research on Women, and proud to be a stigma warrior.

Growing up with HIV in sub-Saharan Africa: One Girl’s Story

By Jennifer Abrahamson

Senior Director, Strategic Communications, ICRW

This post originally appeared on ICRW's blog.

Growing up in this day and age can be difficult for anyone. Entering adolescence in particular can be extremely complicated, as boys and girls wrestle with new responsibilities, their futures and their sexuality. In many parts of sub-Saharan Africa, the risk of HIV infection adds another layer of complexity. For girls like Joyce*, who was born HIV positive, adolescence and early adulthood can prove especially challenging.

I met Joyce in a small courtyard tucked deep within a web of unpaved roads in a slum area of a sub-Saharan capital. Shy and unassuming, she looked much younger than her 17 years. She told me that she had dreams of becoming a lawyer someday, but it soon became clear that attaining that goal would almost certainly remain out of reach.

Her story is heartbreaking. And because she fears being stigmatized, she hasn’t shared the depth of her plight with her neighborhood peers. Shortly after Joyce was born, her mother succumbed to AIDS. As she got older, her father grew increasingly ill and was largely unable to work. As a result, Joyce dropped out of school because she couldn’t afford the associated fees, and at the time we met, she had stopped taking her anti-retroviral (ARVs) medication in part due to the prohibitive cost of transport required to retrieve them from the hospital. I later learned that her father passed away a few hours after our meeting.

There are legions of girls like Joyce in sub-Saharan Africa who were born HIV positive and who are now coming of age while living with the virus, and facing enormous health challenges, as well as stigma and discrimination. And adolescent girls in many countries around the world are also at high risk for acquiring HIV because of social and institutional factors, including child marriage and gender-based violence.

Zambia is one such country. UNICEF estimated there were at least 80,000 adolescents living with HIV in Zambia in 2009. In order to better understand the challenges adolescent girls living with HIV face as they transition into adulthood, ICRW, in partnership with public health research organization, Zambart, is conducting a first-of-its kind qualitative study in the country with support from the MAC AIDS Fund.

The encouraging growth of home-based and provider-initiated HIV testing and counselling in Zambia will likely increase the number of adolescent girls who learn they are living with HIV in upcoming years. As a result, there will likely be an increased demand for treatment, care and support services in Zambia. Despite this burgeoning demographic of young Zambians living with HIV, psychosocial support and health care services for adolescent girls is limited. This deficit is worsened by the prevalence of HIV-related stigma and discrimination, as well as gender-based prejudice that affects the daily lives of girls living with HIV.

In an effort to address this gap in services, the ICRW-Zambart study is examining the unique stigma- and gender-related obstacles girls endure while facing some of the challenges of living with HIV such as adhering to medication regimens and clinical appointments, navigating safe sexual relationships, and handling the psychosocial challenges of learning of and disclosing their status. Through participatory workshops and interviews, ICRW will identify key challenges and stigma-related concerns surrounding HIV and pinpoint areas for intervention development to support healthy transitions to adulthood for these girls.

With this information, ICRW hopes to inform national programming and policies for adolescent girls living with HIV in Zambia. Beyond that, ICRW hopes this study will garner increased attention and action to address the needs and concerns of adolescents like Joyce living with HIV around the world, with a particular focus on addressing HIV-related stigma and discrimination.

As for Joyce, today she is doing much better, although she still faces many struggles. She recently celebrated her 18th birthday, she’s back on her ARVs and her health is improving every day, and she has joined a drama-troupe with other HIV-positive youth. Although finances are tight, she also has aspirations to enrol in a hotel management training course that will give her the tools needed to support herself, stay healthy and if not reach her ultimate dream of becoming a lawyer, to blossom into adulthood.

*Joyce is not her real name. To help support her education and daily needs, please write to Erin Kelly at ekelly@icrw.org. 

Violence and HIV/AIDS: Many Women Experience a Double Burden

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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

The SAN Back-to-School Reading List: 6 Books You Should Read to the Children in Your Life

Talking to children about sexual health and HIV may not always be the easiest. However it is vitally important for parents and teachers to gradually broach these subjects. This is important not just to reduce HIV prevalence down the line, but perhaps more importantly, to mitigate the stigma and discrimination associated with it. 

One of the best ways to impart such knowledge in a lighthearted way is during story time. We recently found Bill and Melinda Gates’ Reading List with books that help children to think globally and be inspired to effect change. In the same vein, we have created a SAN Back-to-School Reading List with books that help children begin to understand the subject of HIV and AIDS, as well as how to support those living with or who have family living with HIV.

Here is our list of 6 books that should help you to get talking about HIV with the kids in your life: 

1. My Dad Has HIV by Earl Alexander

"My Dad Has HIV is a children's book told from the point of view of Lyndsey, a 7-year-old girl in the second grade. Lyndsey is based on Earl Alexander's own daughter Lyndsey. With an easy-to-read style and fun illustrations, this book is a great way to really educate children about the real nature of HIV/AIDS." [1]

This book was written by Earl Alexander, a father living with HIV, for his daughter Lyndsey, and "all children whose lives have been touched by AIDS." [1] Alexander initially struggled "to accept his condition" but ultimately "he resolved to devote himself to educating everyone, especially the youth, about the dangers of sex, drugs, alcohol, and disease." [1] 

2. Alex, the Kid with HIV by Linda Walvoord Girard

"When a new boy who has AIDS joins Michael's fourth-grade class, Michael reluctantly becomes his work partner. He soon learns, however, that Alex is funny, creative, and mischievous. He says he can do anything he wants because "I'm sick," so the two boys write an insulting poem about their teacher. Alex's wish to be treated like everyone else is granted--both boys are disciplined, but their friendship is strengthened." [2]

3. I am HIV-Positive by Wendy Flanagan

"The story looks at the basic facts of HIV/AIDS through the eyes of a child. It explains in the simplest terms transmission, infection and the do's and don't's of prevention. It looks at practical ways of caring and coping. Young adults are more vulnerable to HIV/AIDS than anyone else. Lindiwe's explanation should empower learners to lower the risk of getting sick and increase their resilience to the virus. This is one of the JAWS HIV/AIDS readers developed for primary school learners.The story conveys both the basic information about HIV/AIDS (health promotion) and the subtle psycho-social dimensions of the pandemic affecting learners' lives (personal and social developement). It can be used as a reader, or to help teachers introduce subject matter that is difficult to manage in the classroom." [3]

4. Little Feet, Big Steps by Brit Sharon

"Little Feet, Big Steps is a coming of age story about a young girl that, with the help of her encouraging mother, takes on a huge project by signing up for the AIDS Walk in her city. She turns to her community to fundraise and is completely unstoppable on her journey to make a difference. Throughout the story, Gabby comes to terms with what AIDS is and why people come together to support causes that effect others. This story steps away from traditional storyline of a helpless female character waiting to be rescued by prince charming, and instead, empowers young people to take action in their communities, causing them to be leaders on the planet." [4]

5. Medikidz Explain HIV (Superheroes on a Medical Mission) by  Kim Chilman-blair

Understanding the impact of HIV on children worldwide "Dr. Kim Chilman-Blair and Dr. Kate Hersov teamed up with a leading graphic novel artist to create a series of comic books explaining health conditions to young people from a medical viewpoint. Each comic is written by doctors and peer-reviewed by leading specialists in each respective therapy area. Medikidz is a resource designed to educate not only young patients, peers and their parents, but also to aid practitioners and educators in explaining health conditions as effectively as possible. The books follow a team of five larger than life superheroes from outer space, with each Medikidz specialising in explaining a different part of the body. What's Up with Jason? is an engaging way to educate children about the medical facts behind HIV and how it can be prevented." [5]

6. Be a Friend: Children Who Live with HIV Speak by Lori ed Weiner

"In these writings and drawings, children with HIV infection and AIDS who have come to the National Cancer Institute in Bethesda, Maryland, tell how it feels to be different from other kids, how they face rejection if people learn they are sick, and what it is like to lose friends and loved ones to AIDS. Simple and powerful, the writings and drawings express all the youngsters' hopes and fears." [6]

See one you want to read to the child or children in your life? 

We think this is a great collection of books on HIV and AIDS which discuss the subject from diverse angles in a way that would help a child understand this condition, as well as how to be supportive and non-discriminatory toward people living with HIV or AIDS. 

Here's to a generation free of HIV stigma! Let's all contribute to its making!

New HIV Campaign: My Status is Not A Secret by Josh Robbins

This post originally appeared on Josh Robbins' Blog

Conversation-starting think tank behind “Knowing” and “Open” partner with top visual agency for new engagement platform and interview series by wanting everyone to say “my status is not a secret”

The creative collective The Advisorie Group, the peeps behind “Knowing” and “Open“, never cease to get my happy-wheels turning easily.  But, this time, the championship HIV campaign might have just been taken when they partnered with Parker Trewin (AIDS/LifeCycle participant) and the hot creative agency Column Five to launch “My Status Is Not A Secret.”

“If people are going to be motivated to get tested and, if needed, get treatment, we need to bring conversations about HIV/AIDS out of the dark and into the light,” Trewin says. After living with HIV for 10 years, Trewin only recently came out to his family as HIV-positive. He adds that, “We can each play a part, which is just one reason for me to finally tell my story—and why my status is no longer a secret.”

This year, Trewin rides in the AIDS/LifeCycle with an ambitious fundraising goal to give back to two organizations that have existed since before HIV had a name: the San Francisco AIDS Foundation and the LA Gay & Lesbian Center. To support Trewin in his efforts, the My Status Is Not A Secret site offers opportunities for visitors to help fund AIDS/LifeCycle participants.

But that’s the obvious of the new HIV campaign launched 4.2.14.

For me, I’m always interested in the “why” of things.  Maybe it’s the inherent reaction I have that dates back to my childhood, when I would always ask my parents the question: “But, why?” and they would always answer: “Because.” — driving me insane.  But, I’m curious.  So, I asked the team to answer my “why” questions. They agreed.

Here are the players chatting– Parker Trewin (Inspiration for the site), John Saint-Denis (The Advisorie Group), Ian Klein (Senior Producer, Column Five and all around cool guy) and mentions of Jason Lankow (the King guru/CEO/Co-founder of Column Five). And, well, I’m Josh Robbins– and I run a cool HIV blog.

ISJ:  Why the campaign? Why the website?

Parker:  The campaign started from an ask for the AIDS/Lifecycle – a 545-mile charity bike ride. I asked Jason if Column Five, who I had worked with, would donate some funds to get me on my way.  Jason said he thought it would be more powerful to donate some time. (Actually a lot of time.)  He assigned me Ian and Andrea Bravo and we investigated two reasons why I was so passionate about my efforts: getting a second chance at life and combating stigma. We thought “stigma” was the more powerful theme and what started out as a fundraising site grew into something we think is much bigger. What makes it unique are the stories, which are incredibly powerful and are told from a very personal perspective – from gay, straight, positive, negative, men, women, white, latino, african american, middle eastern. It was important to me that we explore in the widest range possible why people (and why people don’t) know their status and share their status. I was interested in not the choices people make but why people make those choices. And if we lead by example couldn’t we then help people be more empowered to make better choices? It was a way to give back.

"What makes it unique are the stories, which are incredibly powerful and are told from a very personal perspective – from gay, straight, positive, negative, men, women, white, latino, african american, middle eastern."

ISJ:  Where did the tag come from?  Who came up with it (My Status Is Not A Secret)?

Ian:  Once there was a boy and his whiteboard…no really, I was holding a brainstorm session with our copywriter Katy French and Director of Production Andrea Bravo and it was still at that point in the meeting wherein the room wasn’t quite heated up. We were still discussing things like “desired outcomes” and company mission statements—important cornerstones to be sure—but we didn’t quite know what structure we were building. At these types of meetings, I can usually be found at the whiteboard with a pen in hand. I started writing out some of the commonly shared statements one might come across in dating applications—particularly gay ones as Parker had previously shared one he didn’t like seeing: DDF UB2 (drug and disease free, you be too). He felt that this “requirement” was a result of precisely the kind of stigma we were looking to help eradicate with this campaign—the kind of stigma that precluded people from not discussing status openly. I thought, “what would be something I’d want to hear someone say in regards to their status?” “My Status Is Not A Secret.” I wrote it without saying it out loud. Nobody said anything at first. Katy, Andrea, and I all looked at it, each other, and finally said, “Yeah. This is it.”

“Yeah. This is it.”

ISJ:  Why won’t this campaign become more of the same (i.e.: similar messages to HIV campaigns already launched and already at times exhausted)?

John:  The campaign is to educate and to open hearts, not to throw out a bunch of cold facts without context.  We sought to educate through testimony, through story, and that makes it different.  Especially in that we assembled a group of such engaging and honest participants, both for the videos and for the written testimonies. I think de-stigmatizing HIV while still encouraging folks to keep themselves and their sexual partners safe can be achieved best through compassion, and I think it’s very easy to feel compassion and love for the people revealing themselves on this site.  I also think that keeping the people in your life safe isn’t just about preventing HIV transmission, it’s about fostering safety to be honest, to feel safety in support, in being taken care of and in being loved unconditionally. Is that fluffy?  I hope not.  I found out my negative status for the first time in 1987, and have tested negative over and over since, but I am quite sure that we are all living with HIV. I’ve had long time partners who are positive.  I’ve lost many friends.  I’ve learned about living in the moment and of living in courage like no other generation of gays.  We are all in this together.

"Is that fluffy?  I hope not"

Parker:  I think its the perspective and the vulnerability of those that have stepped up to share their stories.

ISJ:  Why the social element of sharing reader submissions?  Where does it all go? 

Ian:  Knowing one’s status is an act of taking responsibility for one’s body and mind. Gay or straight, positive or negative, the ability to own that knowledge is empowering. With that knowledge an individual has the choice of whether to share one’s status with others. We wanted to have a place where people of any race, gender, sexual orientation, or HIV status could go to demonstrate that power and self-confidence. At the moment, those quotes live on the My Status Is Not A Secret site as a repository for diverse thought and opinion on knowing and disclosing status. Who knows—in the future, there could be even more paths for those stories to take.

Parker: For me it’s all about sharing. This is one way people can engage and make their own statement – which is the most powerful of all.

ISJ:  From the agency perspective, share the ‘creative’ process and how you hope it resonates.

Parker: We started with a lot of trust from the get go.  And I’m not the easiest client. I have a lot of opinions and it’s not easy for me to let go of control — especially control of my story. But I had a lot of faith in the team.

John:  The Advisorie Group, which is my agency that partnered with Column Five, came in late in the process, when we got to the videos.  We decided early on that this was only going to resonate if I were to personally sit with each of the interview participants, one on one in a small room and develop a relationship with each of them on film.  In the editing process we removed my voice asking the questions to make it all about them.  I hope that makes viewers feel like they are the ones interacting with the folks on the films.  Although that was the overlying creative process, each person’s interview was a very different experience.  Some talked nearly non-stop for up to an hour each.  Others had conversations with me and asked me questions about my own experience, which I loved.  Who could ask for a more satisfying creative endeavor?

Ian:  We approached the project in a similar fashion to other projects gathering inspiration, wireframing*, scaling and rescaling to budget, and many rounds of content, but always with a conscious eye toward elevating the human element and a respect toward people’s personal choices when it comes to HIV treatment and prevention efforts.  I’d enjoyed working with John Saint-Denis of The Advisorie Group before on a series of short films for the Impulse Group so I brought him on board as soon as it became clear we were going to be producing video. It wasn’t until the day of shooting that we decided it would be more than just one short piece. We realized in the midst of interviews that the richness and honesty contained in the stories people were entrusting us with were too precious to relegate to one video. Out of that a 45-minute documentary was born along with individual interviews that will be rolled out over the first few weeks of the campaign. My hope is that people start to think differently about HIV in that testing doesn’t have to be so frightening, that HIV can be a manageable disease for those with access to care, and that having conversations about status can lead to more intimate experiences.

"My hope is that people start to think differently about HIV in that testing doesn’t have to be so frightening, that HIV can be a manageable disease for those with access to care, and that having conversations about status can lead to more intimate experiences."

Check out this engaging and awesome HIV campaign now! 

My Status Is Not A Secret was designed and built by Column Five.  Interviews were produced by The Advisorie Group, Mimi Fuenzalida, Ian Klein, John Saint-Denis and Parker Trewin.

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Thank you to Josh for allowing us to share this post. If you would like to know more about Josh's work you can follow him on twitter here.

Will HIV Ever Be Safe Enough for You?

This post originally appeared on Mark S. King's Blog.

There is a classic episode of Oprah from 1987 that can still raise my blood pressure. That year, the tiny town of Williamson, West Virginia, became part of a national discussion about AIDS when Mike Sisco, who had returned to his home town to die of the disease, dared to step into a public pool.

The community freakout was immediate. Sisco was quickly labeled a psychopath (rumors emerged accusing him of spitting into food at the grocery store), and the town pool was closed the next day to begin a Silkwood-style pressurized cleaning.

Soon thereafter, Oprah Winfrey arrived with cameras for a town hall forum about the incident.  Fear was the order of the day. “If there’s just one chance in a million that somebody could catch that virus from a swimming pool,” the town’s mayor told Winfrey’s worldwide audience, “I think I did the right thing.”

Sure. Why not react in the most extreme way possible, if there is a chance in a million?

Williamson citizens were not swayed by health officials who calmly explained the established routes of HIV transmission and the impossibility of infection from a pool. “The doctors can say you can’t get it this way,” a woman countered, “but what if they come back someday and say, ‘We were wrong?’”

Indeed. What if? If there’s a chance in a million…?

That broadcast might have remained a sad footnote in HIV/AIDS history, an instructive example of people ignoring scientific fact to protect a satisfying fear, if history didn’t enjoy repeating itself so much. Today, though, the willful ignorance isn’t coming from uneducated residents of a southern town you can barely find on a map.

It’s coming from gay men. And they are just as threatened, frightened, and dismissive of science as the townsfolk of Williamson were thirty years ago.

Recently, research known as The PARTNER Study was presented at the prestigious Conference on Retroviruses and Opportunistic Infections (CROI). PARTNER proved something HIV advocates have long suspected: people with HIV with an undetectable viral load are not transmitting the virus to their partners. The study included nearly 800 couples, all involved in an HIV positive/negative relationship, gay and straight, with the positive partner maintaining an undetectable viral load. Over the course of two years, more than 30,000 sex acts were reported and documented (couples were chosen based on their tendency to have sex without condoms).

Not a single HIV transmission occurred during the study from someone with an undetectable viral load. If PARTNER had been researching a new medication, they would have stopped the trial and dispensed the drug immediately.

The PARTNER results bolster the prevention strategy known as “Treatment as Prevention” (TasP), meaning, a positive person on successful treatment prevents new infections. To date, there is not a single confirmed report of someone with an undetectable viral load infecting someone else, in studies or in real life.

Just don’t tell that to a sizable contingent of skeptical gay men, many of whom took to their keyboards to dismiss the PARTNER findings. Phrases like “false sense of security,” “positive guys lie,” “junk science,” and “if there’s even a small risk” appeared on Facebook postings and in web site comment sections. The people of Williamson must be slowly nodding their heads.

Resistance to the PARTNER study corresponds with stubborn doubts about PrEP (pre-exposure prophylaxis, or HIV negative people taking the drug Truvada to prevent infection). Although virtually every nervous argument against PrEP has been overruled by the facts, naysayers continue to either reject the evidence outright or make moral judgments about the sex lives of HIV negative gay men on PrEP.

Yes, there are unknowns. There always are when scientific studies meet the real world. And every strategy will not work for every person. But the vehement rejection of such profound breakthroughs suggests there is something more, something deeper, going on in the minds of gay men. What is it?

Our collective memories of AIDS horror are hard to shake, and that’s a good place to start. On a gut level, any study suggesting that HIV could be neutralized is met with a weary doubt. Good news is no match for the enduring grief that has shadowed us for 30 years.

The PARTNER study also threatens the view that positive men are nothing more than risks that must be managed. The study kills the HIV positive boogeyman. It means positive gay men who know their status might actually care enough about their health to seek out care, get on treatment, and become undetectable. And, once the positive partner is no longer a particular danger, both partners would bear responsibility for their actions. What an enormous psychic change that would require in our community.

It’s tough to do that when fear creeps in and “what if?” fantasy scenarios take hold. What if my partner missed a dose yesterday and, even though HIV meds stay in the bloodstream for extended periods, his viral load has inexplicably shot up? What if he isn’t being truthful about his viral load? What if he doesn’t know?

The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative but are not. But we’d rather stay focused on the positive person being at fault, because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim.

I have some “what if?” questions of my own. What if these unrealistic fears were meant tostigmatize and isolate HIV positive people? What if I am undetectable and feel no responsibility to discuss my status with a sex partner because I don’t care to engage in a science lesson? What if everyone availed themselves to prevention options that worked best for them? What if my HIV status were none of your damn business?

These risks could be alleviated, of course, if everyone simply protected their own bodies when having sex with people they don’t know or trust. But that would place an equal burden on negative men, and what a bother that is.  Better to leave that discomfort to those with HIV, vectors of disease that we are. Just consider us criminals, lying to you about our viral loads and spitting in the food in Williamson, just waiting to infect you when we get the chance.

FACE OFF -- An HIV+ Man Faces His Accuser 

As long as we’re giving undue attention to fantasy scenarios we’re not focused on the real threats. The rates of STD’s are up. Young gay black men in the United States don’t have proper access to healthcare and have infection rates worse than any developed country. Our community is plagued by  alcoholism, addiction, and mental illness. Do we want to debate established science or should we devote that energy to other challenges to gay men’s health?

If you still have the arrogance to believe you could win the HIV Powerball Lottery and be the one person who gets infected in ways science has disproven, you’re perfectly entitled to that point of view.

Here are some helpful instructions, however. Carefully step away from your computer and don’t touch the cords because 50 people die of product related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Once there, refuse food or water because, well, you never know. Now slip into your bed of willful ignorance and try to make yourself comfortable.

The good people of Williamson are keeping a spot warm just for you.

Mark

p.s. In the time it took you to read this article, the number of people who were infected by someone with HIV who had no viral load was zero.

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Thank you to Mark for allowing us to share this post. If you would like to know more about his work, you can follow his twitter feed here.