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.

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.

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.

The Hidden Epidemic: HIV in Eastern Europe, Part 2

Hello there, #StigmaWarriors!

We hope you enjoyed the first installation of “The Hidden Epidemic”, which discussed the prevalence and stigma surrounding HIV/AIDS in Eastern Europe and Central Asia. In Part 2 of the blog series we will discuss the effectiveness of HIV treatment and prevention policies in three former Soviet republics: Estonia, Ukraine, and Russia. These nations have the highest HIV prevalence of all the former Soviet republics combined. In fact, data suggests that Russia and Ukraine are responsible for up to 90% of new HIV infections in the region! 

Below, we take a look at HIV programs in all three countries from most comprehensive to least comprehensive, and explain how stigma affects the ways each country treats those affected with HIV in certain populations.

Most Comprehensive: Estonia

Prevalence: Estonia has the highest HIV prevalence in the European Union, at 1.3% [1]. As a result, preventing and treating HIV is a top priority for Estonia as well as the European Union. Given that half of IDUs in Estonia are either confirmed or suspected to be infected with HIV [2], public health officials are particularly focused on ensuring that the IDU population has easy access to needle exchange and drug treatment services.

Progress: Since 1992, when the first National AIDS Prevention Program was approved, Estonia has managed to reduce the number of new HIV cases per year [3] with such activities as:

• Increasing HIV/AIDS awareness among young Estonians [4];
• Providing needle exchange services to almost half of IDUs [5];
• Establishing an HIV testing and counseling system funded by the state [6];
• Providing those living with HIV with free antiretroviral (ARV) medication [7]; and
• Creating a high-level, multisectoral HIV and AIDS committee as an advisory body for its central coordination of the implementation, including representatives of all the relevant ministries, municipalities and counties; Parliament; the office of the Prime Minister; four thematic working groups; PLHIVs; and the youth organizations’ union [8]. 

Overview of the issues in context: where does stigma fit in?

• Funding: While HIV is a priority of the Estonian government and the European Union, there is still a lack of funds for HIV organization so any funding HIV organizations receive is inconsistent at best  [9].
• As a result, drug users cannot consistently use needle exchange programs because they are sporadically funded and supplies are limited. Additionally, most of the focus on needle-exchanges has been in the capital, Tallinn, leaving needle-exchange programs in other parts of Estonia to scramble for funding and services [10]. As a result many IDUs have stopped using these programs.
• Structure of National Health Programs: Local municipalities have no clear responsibility to cover health care expenditures and therefore financing varies widely between regions [11]. Many health care commissions in Estonia have limited their roles, which means monitoring of health services for PLHIVs is inconsistent [12]. Additionally, while testing services are offered, counseling services are not, meaning many people who are diagnosed with HIV are left to deal with the emotional ramifications on their own [13].

• The national HIV response is limited in geographical location, with many programs only available in the capitol of Tallinn and the north-east region of Estonia. That means those in other regions do not have the same access to prevention, education, testing, counseling, and treatment as those in Tallinn and north-east Estonia.
• Cultural Dynamics: The majority of Estonians living with HIV are not of Estonian ancestry, but Russian migrants looking for work or Estonians of Russian descent. Many of these people are either unable or unwilling to gain Estonian citizenship due to restrictive citizenship laws [14], and because of cultural stigma against "non-Estonians" the government is reluctant to fund programs that will be able to reach these populations. Thus, the needs of a large number of those at risk of acquiring or those already living with HIV remain unmet
• Intersecting Stigmas: Like in many other countries, Estonians are reluctant to fund programs for "deviants" such as sex workers and IDUs, despite the fact that 50% of all IDUs in Estonia are either confirmed or suspected to be living with HIV.

Where do we go from here?

• The Estonian government, with help from the EU, needs to focus more on working with the most affected populations (including those who are typically or nationally stigmatized - IDUs, members of the LGBT community, sex workers, and Russian migrants). One solution could be involving more community-based organizations in testing and treatment services, and implementing counseling services along with treatment services so that people newly diagnosed with HIV would be more willing to access health services than they currently are.
• To get to zero new infections, the government needs to recognize that while HIV rates are falling in Estonia, they still need to provide greater and more consistent funding to programs that are most in need of it, particularly creating more services around the country and not just in Tallinn.

Comprehensive National HIV Programming: Ukraine

Prevalence: Currently in Ukraine HIV prevalence is estimated at 0.8-1.3%, and is one of the fastest-growing HIV epidemics in the world [15].

Progress: While the Ukrainian government was slow to begin recognizing the vast impact of HIV on Ukrainian residents, things have been improving in terms of funding and treatment options. In 1999, the All-Ukrainian Network of People Living with HIV/AIDS (Всеукраинская сеть людей, живущих с ВИЧ) was founded, and in 2004 became the key distributor of the funds Ukraine was given by the Global Fund for HIV medication and treatments (previously, this money had been given directly to the Ministry of Health/MOH, but was later shifted to this organization because of government corruption) [16]. 

Furthermore, due to improvements in Ukraine’s economy and a renewed interest in improving Ukraine’s overall health systems during the 2000s, vast improvements were also made to the HIV health care system in Ukraine, including:

• In 2005, an advertising campaign was launched highlighting that eight Ukrainians die from HIV or AIDS every day [17];
• In 2007, methadone (a synthetic drug used to treat heroin addiction) was legalized and the criteria for who could receive treatment was relaxed [18];
• In 2008, a campaign aimed at students resulted in 15,000 free anonymous HIV tests and 100,000 students receiving information about HIV and about where they could be tested [19]; and
• By April 2010, there were HIV testing and treatment centers in all 27 Ukrainian oblasts (provinces), and thousands of IDUs were benefitting from methadone treatment [20].

Overview of the issues in context: where does stigma fit in?

• Funding: The Ukrainian government is bankrupt, and that is reflected in the subsequent dearth of funding for HIV prevention and treatment, especially harm reduction. Only 32% of IDUs, for example, are reached through HIV prevention programs, and less funding is allocated towards programs for sex workers [21]. 
• Corruption is an issue in the Ukrainian government as a whole, but much of the corruption directly affects HIV patients. In 2012, the MOH was accused of embezzling money earmarked for HIV/AIDS patients, and an internal investigation was launched to see if MOH officials were utilizing funds set aside for ARVs for other uses [22]. While there was no real judicial conclusion to the investigation, the officials accused of this were fired.
• Intersecting Stigmas: As is the case in many other countries around the world, Ukrainians – especially key populations within Ukraine living with HIV - experience high levels of discrimination because of the cultural and social stigma surrounding HIV. Those living with HIV in Ukraine, for example, are forced to have a special stamp on their national ID cards indicating that they are HIV positive [23], which forces them to (perhaps unwillingly) disclose their status and often causes them to experience additional stigma and discrimination in their daily lives.

Stigma against key populations further plays out in Ukraine in the following ways:

• Drug users wishing to receive methadone treatment (which is key in preventing HIV because it stops needle sharing) are placed on an official register that can be used to exclude them from certain professions, and confidential medical records for IDUs are often shared between medical professionals and law enforcement institutions in Ukraine [24]. Additionally, the police habitually raid drug treatment clinics [25]. As a result, IDUs avoid needle exchange programs and other drug treatment services.
• Unfortunately, stigma is also applied towards orphaned children living with HIV. Many are unable to find work after leaving the orphanage, which causes many orphans to turn to drug trafficking and sex work in order to survive [26].

Where do we go from here?

• The Ukrainian government needs to address HIV-related stigma and discrimination in the government, law enforcement, and in the general population so that those who need access to basic testing and treatment can receive it without fear of harm.
• More coordination between government agencies, law enforcement, and the All-Ukrainian Network of People Living with HIV/AIDS could help decrease stigma in Ukraine. 
• Airing media presentations on the harmful effects of HIV stigma and discrimination on those affected by HIV, with a particular focus on key populations, could also be beneficial.
• Most importantly, not just for PLHIVs but for all of Ukraine, the conflict between pro-Russian belligerents and the government in Kyiv must reach some sort of conclusion. Currently, the conflict is interrupting access to treatment and testing services in Eastern Ukraine, which has the highest prevalence of HIV in Ukraine.

Least Comprehensive HIV Programming: Russia

Prevalence: Russia currently has a 1.1% prevalence of HIV, and that number is reportedly increasing, with an average infection rate of 35.7 cases for every 100,000 people reported in 2013, an increase of 7% from the past year [27]. There would be a progress section in this area, but after looking at all the issues currently in Russia it seems as there has been no progress made in the fight against HIV. 

Overview of the issues in context: where does stigma fit in?

• Funding: There is a systemic reluctance to fund programs targeted towards groups at a high-risk of contracting HIV in Russia, and multiple NGOs have pulled financial support for HIV testing and treatment in-country.  In 2012, the Global Fund officially cut its aid to Russia after years of conflict with officials from the Russian MOH over HIV services and treatment policies [28]. Additionally, many NGOs are being forced to register as 'foreign agents,' which restricts the types of activities NGOs are able to carry out [29].
• Restrictive Laws: Currently, Russian law does not support and in some cases even bans harm reduction policies, claiming these policies threaten drug control. For this reason, for example, the Russian government banned methadone in 2005 [30], despite the fact that in some cities more than half of all IDUs are either confirmed or suspected to be living with HIV [31]. 
• Even worse, the Duma (Russia’s lower house of parliament) introduced a bill in April 2014 that would forcibly require any person living with HIV, even if they were foreign nationals, to be fingerprinted and be placed in a national database of those living with "dangerous diseases," [32].
• There are reports that IDUs have been harassed and arrested by police outside needle exchange programs and pharmacies where they have bought syringes, a practice that further deters other drug users from accessing them. These negative experiences with law enforcement when trying to access services drives IDUs away from initiatives that could avert the risk of becoming infected with HIV [33]. 
• Intersecting Stigmas: As with Estonia and Ukraine, drug users and sex workers are heavily stigmatized in Russia, and because IDUs most often seek out HIV testing and treatment programs, those living with HIV who are not IDUs are also stigmatized [34]. 
• Drug and HIV treatment centers also stigmatize patients as the centers are kept segregated from the rest of the medical communities, to prevent the perceived spread of HIV via doctor-to-patient contact [35].
• Furthermore, since drug use and sex work are taboo topics in Russia, educational programs in schools only provide a cursory overview of sex and drugs, which hinders what could be effective prevention programs for children [36].

Where do we go from here?

• Russia has a long way to go before any comprehensive HIV strategy can, or will, be implemented. This is because rampant homophobia and stigma against drug users and other populations vulnerable to HIV have and continue to impede any sort of progress. Thus, addressing homophobia and stigma against key populations should be the first issue tackled in Russia’s fight against HIV.
• Russia’s increasing hostility towards the West has impeded NGOs from working with people living with HIV in-country, and multiple NGOs have pulled funds for HIV-related services from Russia. While changing the nature of the political climate in Russia may not occur overnight, NGOs and native Russians alike could work towards making small changes in local HIV policies that could make a big difference for those living with HIV in Russia. 

Until the Next Time…

It is important to remember that all countries in Eastern Europe and Central Asia have unique HIV treatment and prevention programs, and that the current state of affairs in some countries is not indicative of programs or laws in other countries. However, HIV stigma and discrimination across the region is still prevalent, especially towards key populations like IDUs and sex workers, and these attitudes and actions hinder effective treatment for those who need it the most. Awareness about these issues makes us at the SAN wonder how the United Nations and other NGOs can help or put pressure on countries to reduce HIV stigma and improve their treatment programs. 

This information also raises these questions: 

• How can other countries help and be good examples for Eastern European/Central Asian 
• Should there be a joint focus on drug and HIV prevention?
• What do you think should be done to help people living with HIV in a tough political climate?

What do you think? As always, we’d love to hear your thoughts!